December 31, 2010 - Asperger's I Hate You!

I hate you Asperger's. I hate you with all of my being. You rob the soul, the joy, the comfort from those that you descend upon. You isolate. You frighten. You deplete hope and optimism. You annihilate success. You emasculate triumph. You trap in an envelope of darkness.

I just need a glimmer - a glimmer will sustain me. A glimmer of hope. A glimmer of creativity. A glimmer of joy. A glimmer of a future that will be...anything other than what I fear it will be.

I need time. I need space. I need strength. I need compassion. I need understanding. I need support. I need companionship. I need love. I need abundance.

Asperger's I hate you! Daughter, I love you. I love you, I love you, I love you.

November 19, 2010 - Parenthood

I spoke earlier about my love of the show Parenthood - there's a great storyline that includes parents and extended family dealing with a child with Asperger's and the trials and successes that they experience. It's a great show and pulls at my heartstrings every time Max (the child with Asperger's) experiences a setback or an achievement. It shows that there are lots of parents out there struggling with the same issues and more importantly shows them figuring out what works for the child and the family. Please watch - Tuesday nights at 10:00 on NBC. Also, I've included a link to the show's website where an expert on Asperger's discusses the issues outlined after each episode.

Remember - DIFFERENT IS BEAUTIFUL!

October 22, 2010 - Victory!!

The one thing that I'm certain about is that every Aspie out there has a specific gift. It's probably apprarent to them, but it must be recognized by those around them. It must be seen as a victory that they can claim all their own. My daughter has many gifts - one of them is the ability to capture facial expression and movement in the painting of an abstract. It's beautiful to see. Everytime I see one of her paintings I wonder if it's because she doesn't always understand what she's seeing in other people's facial expressions and has a need to reproduce it. Or maybe it's an outlet for her to express her own emotions, which are often hidden behind a blank facade. Whatever the reason, I recognize her gift and put it here for all of you to see.

Remember - DIFFERENT IS BEAUTIFUL!!

October 21, 2010 - Exhaustion SUCKS!!

Ok, first I want to start of by bragging a bit about a couple of victories that my daughter had earlier this month, that I haven't mentioned yet. First - she exhibited work at the Sacramento Arts Festival, which is a huge art fair held at our convention center. There are artists and craftsmen from all over the country exhibiting there, and our school district exhibits artwork from each of its schools, by grade and genre and that work is judged by a panel. My daughter won first prize for an acrylic that she submitted. It's my favorite of her work, so it was wonderful to see it recognized. She got a huge blue ribbon and a $25 cash prize which she cashed and spent on more canvas and paints. I felt good about that.

Later that week, she was named Student of the Month for academic achievement! And she ran for Student Class President! Considering that two years ago she was completely school phobic and on home hospital and that last year, she made it through just by the grace of God - this is huge. HUGE!! Her teachers and principal were concerned about her achievements last year, but everyday that she was there was a victory for her. Everyone is completely supportive this year and relishing in her achievements.

This week, however I've seen a backslide on the part of her teachers. I think because she's been doing so well, they've assumed that she's cured of her Asperger's and therefore they no longer need to honor her IEP accommodations. She was given detention everyday this week, in one case for work that she'd completed, but handed in late - it was due today and she handed it in today, but didn't have it available when she arrived in class. My daughter's IEP includes an additional time accommodation - which in my opinion is the most important accommodation there is, except for NO DETENTION!

This kind of backsliding has me scared to death. My daughter is sitting behind me, it's almost 8:30 and she's struggling through homework. I hate harrassing her to get it done, she gets upset and my older daughter has to be on call for math tutoring on a regular basis. It's exhausting for the entire household. I sent each of her teachers and her principal an email outlining my concerns, the key will be whether or not they respond. I'm so, so tired and I know my daughter is exhausted. I don't think that her teachers realize that homework consumes about four hours a night, every night - that leaves no time for family time, no going out to dinner, no going to family functions - nothing on weekdays. It sucks! The one positive - she's doing it! My daughter is sitting there working through it, no major tantrums, just getting it done. She's a sav!

Remember - DIFFERENT IS BEAUTIFUL!! (And exhausting)

September 23, 2010 - What to do...

I have my daughter's first 504 meeting coming up next week. All of her teachers and the rest of the special education team will be there. I've fought tooth and nail to get her services over the last few years and I suddenly find myself in the position where I'm thinking about holding back on certain services.

I've spoken about the huge improvement in my daughter's performance and general attitude at school. This has led me to re-think some of the services that she receives, specifically speech therapy. Last year this service was immensely helpful because the leading specialist on social pragmatics and autism/Asperger's was on staff at my daughter's school. This is one of the reasons that I chose her school for her. Due to budget cuts this therapist was let go and a new person was hired. The new person is just out of college and this is her first year of providing services in a school setting. This does not make me comfortable considering the lack of expertise on autism and more specifically, Asperger's in the rest of the special education team at the school.

Here's my thinking - my daughter has drama class first period, which she loves. This class gives her the opportunity to participate in small group activities, perform in front of her class and through monologues and such, learn appropriate intonations and expression. Speech therapy is a pull-out service, which means once or twice a week, she's pulled from class to participate in services. I think leaving her in class is a more productive and helpful tool in practicing social pragmatics. Also, I don't want her pulled from her other core classes because I don't want her falling behind in those subjects, so I told my daughter not to attend speech therapy until I could get a hold of the principal to discuss this with her. No surprise - she hasn't returned my phone calls.

The speech therapist wasn't thrilled with my decision and called me to ask me about it. I explained my reasoning behind my decision, but she persisted that she felt she could be helpful to my daughter in other areas. I'm willing to consider this, but refused to change my mind regarding the pull-out services.

I feel good about this decision, though I'm certain that I'll get grief about it from the rest of the team during our 504 meeting. The goal for the meeting from my perspective is to take a step back and give my daughter the opportunity to succeed on her own with an analysis of support that she may need now, not based on her needs from last year - that's always the problem with services, they're always a step behind or a year too late. I'm sure that she'll need more supports in place as the year progresses and her work load increases. For now, it's going to be all about walking the fine line of reining in the special ed team without burning any bridges or giving the impression that my daughter doesn't need services. Here we go again - another year of fun, fun, fun.

Remember - DIFFERENT IS BEAUTIFUL!!

Father Storms Bus Confronts Bullies

I'm adding a link to an article outlining a recent incident where a father boarded a school bus and confronted the bullies of his disabled daughter. This is an issue that is epidemic in this country - and an issue that is particularly dangerous for already fragile individuals, who seem to be the target of bullying. Children with Asperger's who are socially awkward, often find themselves bullied, as well as socially isolated. It's time that parents hold school and work officials accountable for allowing this culture to continue! While I don't advocate the method with which this dad confronted the bullies involved, I certainly understand the frustration and rage.

September 16, 2010 - Changes, Changes, Changes

A while back my daughter's therapist told me that children with Asperger's tend to mature in spikes - they might spend a couple of years seemingly behind their peers in maturity and topics of interest and then they'll catch up very quickly, level out for a while and then can fall behind again.

Well, we're going through a spike! My daughter turned thirteen a couple of weeks ago and that seems to have been a catalyst to some changes in attitude and personal appearance.

A couple of months ago she asked me if she could dye her hair purple. I said maybe not her whole head, but would compromise and let her get purple highlights. Her hair turned out great - she loves it. Then she bought make-up with her birthday money - nothing drastic - just light colors. Ok, so I'm still good. Then she asked me to pluck her eyebrows - ok. Then she asked me to curl her hair before school one day. Still ok. And finally, two days ago she wore eyeliner to school! Dark eyeliner!! The next day, I was able to get over my shock enough to make some suggestions about eyeshadow and light lip gloss. My brain is still trying to catch up. This is a girl who I had to harass into the shower two months ago. She rarely showed any interest in fashion, no interest in make-up or her personal appearance. She's always loved to accessorize - which I've always found a contradiction to her otherwise lack of interest in all things fashion - but she loves hats and jewelry. I'm happy that she's finally taking pride in the way that she looks. She has a very strong sense of herself and still doesn't follow trend - which I love about her. So while she's showing an increased interest in dressing and make-up and hair, which is all typical thirteen-year-old behavior, she's not buckling to fashion pressure.

I find myself in the strange position of trying to allow her to be herself and making sure that the amount of make-up that she wears and her new obsession with her hair is balanced and appropriate. Today her therapist made a comment about her eyeliner - in a positive way, but still, letting me know that she noticed. I wanted to ask her if it was appropriate - then realized that that's a parental decision and one that I have to make on my own. I think it's time to have the "boy talk", too. Yikes - not looking forward to that one. I've read that Aspies and other adolescents on the spectrum can be vulnerable in personal relationships, including romantic and/or sexual relationships. This is why it's very important for parents to have a good understanding of how their child is feeling about physical attraction to another person. Making sure that they understand appropriate behavior in these situations will protect them from others who might take advantage of them, as well as guide them in their own behavior and responses to others.

And the journey continues...

Remember - DIFFERENT IS BEAUTIFUL!!

September 14, 2010 - And We're Off...

Back to school! I start each school year with a mixture of fear, anxiety, apprehension and hopefulness. I worry on multiple levels - first - will my daughter's teachers be on board with her IEP accommodations? How much of a bitch do I have to be this year and how soon should I start? How will she react to the new environment? Will she verbalize her needs or become non-verbal, with teachers calling me out because they see her as obstinate?

Then there's the worry on the social level - will my daughter be able to make friends? Will the children who were nice to her last year come through this year? Will she be isolated? Will she eat lunch alone? Etc., etc., etc.

I think my daughter usually starts each school year with almost identical emotions - fear, anxiety and hopefulness. I think she's truly more optimistic than I am - or maybe she tells herself and me what she thinks I want to hear - "It's going to be different this year" "I'm going to try really hard this year" "The kids seem much nicer than last year - I bet I'll have friends this year" and worst of all "Don't worry".

But I have to tell you - this year feels different. Somehow, this beautiful, grounded, confident girl has emerged. She goes to bed on time, wakes on time - and in a good mood! She follows the morning routine with minimal guidance from me, she picks out her own clothes (well - really, she costumes, more than dresses - haha!!), she does her homework without me having to badger her - it's been miraculous really. And most shocking - late last week, she advocated on her own behalf! She approached the principal of her school and let her know that she was in the wrong first period class and wanted to move to another. Then she told the principal that she would appreciate it if she could handle the situation as soon as possible and then rushed off, stating that she didn't want to be late for class. Amazing! Just amazing!!

Most beautiful to see - today when I picked her up from school, she came out of the building with another girl - laughing! Ha! I sat in my car and cried as I watched her laugh and say her good-byes to her classmates. Last year at this time, I would feel victorious if she lifted her head and made eye contact with another child or could make it through the day without a full-blown meltdown. It's still so early in the year, we're just two weeks in - but I feel so hopeful and proud. Somewhere along the way, my daughter packed away the tools that we've been giving her to navigate and flourish in her world. This isn't to say that we're out of the woods - we still have to work through so many obstacles - there are still meltdowns occasionally - I'll write about that later, though - today I just want to bask in my pride in the young woman that my daughter has become and say my silent prayers that it continues.

Remember - DIFFERENT IS BEAUTIFUL!!

iHelp for Autism

I've posted an article from San Francisco Weekly about the remarkable benefits being shown by the new iPad for children on the autism spectrum. Please read - it's amazing!!

August 17, 2010 - Disclaimer

We have a family member visiting this week whom my daughter hadn't met before. I always feel a little uneasy when my daughter is being introduced to new people because I never know how she'll react to them. She could be non-verbal and not make eye contact, never really warming up to that person - which is always uncomfortable because she can seem rude when in this mode. Or she can be verbal - but in a very direct way, which again can seem rude. This often leads me to issue a disclaimer explaining that my daughter has Asperger's and might seem a little rude, but not to take it personally, etc., etc. I'm going to work on not doing this anymore because I don't think that it benefits us or the situation. More often than not we go through a process where she's stand-offish and then verbal in a direct way and then she warms to the person - which is great - but that person can become an object of intense attention. She has to show every piece of art work she's ever done, show off her room and all of her treasures and tell every story that she can think of. She will also interrupt conversations - not because she's rude - but because she likes the new person and wants to be friendly and participate in the conversation, this is where my interventions start. I try to gauge how tolerant the visitor is to her attention and then I gently direct her to other activities or gently tell her that she's interrupting and to please let whoever's speaking finish. She's always very responsive to these interventions - but bursting at the seam to get in there.

Thank goodness my cousin is a tolerant person and gets a kick out of my daughter's directness, which can be funny at times. The positive in these situations is that there's a chance that she will be willing to participate in conversations and interact with new people - not long ago she couldn't manage this - she would almost always be non-verbal and not make eye contact. So while I might feel a little discomfort - it's well worth it to see her interacting (even if it's in her unique way) with people outside her normal circle of family and friends.

Remember - DIFFERENT IS BEAUTIFUL!!

August 8, 2010 - The Telephone - YIKES!!

I can often go days or weeks without realizing that my daughter is different - this is probably because her quirks have become so well known to me that they seem normal. But this week I had a glaring neon sign put in my face - it said ASPIE! ASPIE! ASPIE!

My daughter's birthday party is coming up soon and we're sending out e-vites. We don't have email addresses for all of the girls that she wants to invite, so I had her call a friend from school to get her email address and the email addresses of a few of the other girls on the invite list. Well - this completely undid her! The thought of calling someone on the phone stressed her out completely. She has this thing where, when you answer the phone and say hello, she says hello back, and then if you say hello again, she says hello back again. She doesn't say "is so-and-so there?" or "hi, this is ..." when the person on the other end says hello. I'm used to this so when she says hello the second time, I usually will just start the conversation. Well, other people don't know this of course, so when she called her friend and her friend's brother answered the phone, he hung up on her after the second round of hellos. I called back and when he answered asked for the girl then handed the phone to my daughter. When the girl came on the phone and said hello my daughter didn't say anything back! I had to tell her exactly what to say through the entire conversation. It was so awkward!!

This experience taught me a few things: first - because my daughter hasn't had friends from school before now, she hasn't had the opportunity to have phone conversations with friends or individuals outside of her family circle; second - we really need to practice phone etiquette; and finally and more importantly, she's spent the last couple of years learning to model her social interactions based on facial expressions and body language - social pragmatics - but, on the phone she can't see a person's face or their body language, so she has no idea how they're responding to what she's saying.

This week we'll be practicing - I'm going to call her on her cell phone and give her different scenarios so that she'll understand the appropriate answers and or behavior during phone calls. Just one more life lesson coming at the most unexpected time - continuing the journey!!

Remember - DIFFERENT IS BEAUTIFUL!!

August 3, 2010 - Spur of the Moment!

One of the things that's been hardest for me to adjust to with my daughter's disorder is her lack of spontaneity. I raised my older daughters with an adventurous spirit - we'd decide at the last minute to go to the beach, or to the snow - no plans. I would just pack us a couple of changes of clothing and a picnic and we'd be off. We had some of the most fantastic experiences this way. However, my daughter has issues with being spontaneous on any level. I was feeling a bit stressed out last week and wanted to get out of town for the day. I thought a drive up to the beach would be perfect. We could throw our bikes on our rack and drive the couple of hours there, spend some time on the beach, have lunch, shop and head home.

Sounds great right?

Not so much to my daughter. She needed to know why we were going, what we would be doing, how long we would be there, what we would eat, etc., etc., etc. This just really added to my stress - then I realized that she wasn't being obstinate or unappreciative - she was just being an Aspie. She needs control over her environment - not knowing what to expect is stressful for her, so she wants as much information as possible. So I gave her an outline of what to expect - she still wasn't thrilled. I finally told her that it was fine if she didn't want to go, but I was still going. This kind of jarred her. She's used to me being a little more accommodating than I was that day. A little later she came into my room as I was putting my bag together and told me that she'd be going with me. She wasn't terribly excited - haha! But she put herself out there and took a chance that things would be okay.

And as expected we had a great time! Her response to the water is always amazing - she played in the surf and collected sea shells and rocks. We walked for hours. Then we shopped a little, had lunch and then took a long bike ride along the beach. It was a fantastic day - she kept saying "this is so nice". It taught us both a lesson -her lesson is that it's okay to be spontaneous, to trust herself and me when we're not quite sure what's going to happen. And it taught me that it's okay to be a little less accommodating - to push her limits in order to show her new ways of thinking and behaving - to trust myself that I won't damage her irreparably. The experience provided a positive experience that will be an example for her the next time she's asked to do something outside of her comfort zone.

Remember - DIFFERENT IS BEAUTIFUL!!

July 29, 2010 - Americans with Disabilities Act

This week is the 20th anniversary of the signing into law of the Americans with Disabilities Act. There have been celebrations of various sorts all through the country. This historical law ensures that individuals with disabilities, both physical and developmental are protected in educational and work environments. In addition to these protections, it's important for parents and individuals to learn to advocate on behalf of the disabled to ensure that these protections are implemented. I'm adding a couple of links that discuss advocacy on one's own behalf or on behalf of a loved one.

Remember - DIFFERENT IS BEAUTIFUL!!

July 26, 2010 - The Swing

I've talked a lot about my decision to not include drugs in my daughter's treatment plan. What that means is that we have to be very creative and open minded about activities, diet, etc., that will help her with mood stabilization and anxiety control. Somethings work - somethings don't. Once her therapist told me to roll her in a yoga mat and apply pressure to her back. There are certain types of stimuli - like pressure that create activity in the brain that will calm an individual on the autism spectrum who doesn't like to be touched. There's a scene in Temple Grandin about this - she creates a "hug machine". Anyway - the yoga mat thing didn't work - we gave it a try, but couldn't stop laughing long enough to make any progress. No harm, no fowl though.

Most of the time my daughter will show outward signs of stress or anxiety that don't include tantrums. I wrote earlier about her twirling. She also asks me to take her to the park so that she can swing on the swings when she's had a particularly stressful or emotional event. When I spoke to her therapist about this she told me that it was normal for someone on the spectrum to want to swing or twirl when anxious - again allowing the brain to "recalibrate". She suggested that I get her a rocking chair or a swing. My daughter asked me for a swing set for her birthday - she'll be 13 next month, so I thought maybe a swing set wasn't the best solution. What I found instead is a backyard swing - the kind with a bench seat that fits three. It's been great! She's actually on it right now. She just sits and gently rocks while reading or sitting with her dog. She took to it right away and it definately makes her feel better. It actually ended up in our sun room, as opposed to outside. While I understand that most people want a backyard swing in their backyard - this works for us because it's a spare room with great lighting and a nice breeze. It's also become a great meeting place for the rest of the family, too. Many times I look over and all of my girls are sitting on the swing talking or just chilling out - usually with all three dogs piled on.

Anyway - my point in relaying this story to you, is that there are other means to treatment - it's just a matter of being willing to try new and maybe unconventional things. And remember that some will work and some won't - don't give up! When you find a little nugget that works, it's so worth the effort!!!

Remember - DIFFERENT IS BEAUTIFUL!!

July 21, 2010 - Shame on Meredith Viera

This morning the Today Show had a segment on Phoebe Prince, the 15 year old girl who committed suicide after being bullied by a group of girls and boys at her high school. The segment was based on the Grand Jury report released recently surrounding the charges against six individuals. In the report it was stated that Phoebe had a history of mental health issues, including one previous suicide attempt and was taking anti-psychotic and anti-depressant medication. The implication surrounding the segment was that this information somehow mitigates the damage caused to Phoebe's mental state by the bullying - leading to her suicide.

I would argue the opposite. Bullies typically target victims that they see as weak and/or socially isolated. I think it's safe to say that bullying has a negative affect on the mental health of victims, and will most certainly exacerbate mental health issues already in existence. Individuals struggling with mental health issues and suicidal tendencies have fewer tools to deal with the emotional and psychological torment caused by bullying. It makes sense that children and individuals with pre-existing mental health conditions would resort to suicide.

Also stated in the report was that school officials were aware of Phoebe's mental health issues and the bullying that she was suffering, as well as other conflicts that she had with various students. Still, they took no preventative or disciplinary steps to protect her.

The bottom line is that bullying is NEVER okay - and if that bullying leads to the death or self-injury of the victim, the blame still lies with the perpetrator, not the victim. The school should have taken more forceful disciplinary steps to protect Phoebe, especially in light of the fact that they had knowledge of her frail mental health. The Today Show never raised the question - Well if the school knew that Phoebe had mental health issues, why didn't they intervene on her behalf sooner? And what relevance does this information have on the fact that she was bullied on the day of her suicide and on a regular basis previously? I think that it can be assumed that a person who takes their own life has mental health issues, whether diagnosed prior to the suicide.

The Today Show set a very bad precedent this morning by taking the blame away from the bullies and putting it on Phoebe, who may have had mental health issues, but should have been protected by the adults and professionals around her. Shame!

July 20, 2010 - Getting back on the Gravy Train

So, I've been at home full time since October of last year. Though I felt we were making some progress with my daughter, in truth she was coming off the rails. She was trying to work through her issues and navigate life on her own and it was not working for her. She needed a navigator - and that was me. When I left my job last year, though I was concerned about the financial ramifications, mostly I was relieved that I could finally just focus on my daughter. At that point I had a vague understanding of what needed to be done - but I never anticipated the full house cleaning that was needed. I've discussed at length my need to educate myself on Asperger's and to fully put myself on the front lines of her mental health treatment plan and her educational plan, so I won't go there again. But I will say that being with her full time has made such a difference in both our lives, that I could not have comprehended it fully without experiencing it. She's a different girl now. Happy, funny, communicative, artistic, brilliant! This isn't saying that we don't have episodes - but we don't have days and weeks of episodes. I've learned and she's gained tools to help her work through issues and understand the world that seemed so foreign to her just a few months ago.

This all leads me to the thought that it might be time for me to re-join the workforce. My hesitation lies in the concern that my daughter will backslide to where we were before the full time intervention. I think that the next step on our path is learning to maintain our progress while leaning less and less on each other. My daughter will be 13 years old this summer. It's time to teach her how to be on her own - in small doses, of course. I guess I can think of this as a continuation of her treatment plan. I have a job interview today - the one thing I will say is that the job will pretty much have to be perfect for me to take it. This time has been too precious to me to give it up for a position that I won't find fulfilling.

So, wish me luck in this new transition period - I'll need it!

Remember - DIFFERENT IS BEAUTIFUL!!

July 18, 2010 - Neurology?

Wow! It has been a seriously long time since I've written anything on this blog. I've missed it. This has been a great source of therapy for me. It always helps to write things down - it can give great perspective. I stopped writing because I felt purged - empty of the energy to share what my daughter and I were going through. I sat down many times, expecting to post something, but it never came.

So here's where we are: on the educational front, we're back at square one. My daughter passed all of her classes - thank God! We finally broke through and started getting accommodations implemented - almost - the resource specialist told me in the last IEP of the year that we can put accommodations down on paper, but can't force teachers to implement them. Oh really? When I asked her who could ensure the implementation of the accommodations, she told me the principal. No offense, but if that ninny is in charge - we're in trouble. I called her personally after the meeting to let her know about my concerns. I told her that I had to hire a lawyer because of her inability or unwillingness to implement the IEP and that I hoped she would not mistake my civil tone for weakness. I think she got the picture. We'll see - my plan is to by-pass her and go directly to the teachers. As luck would have it, my daughter will have mostly the same teachers next year, so that will give me a head start. I'll keep you posted about that.

On the medical front: my daughter has a history of sleep problems. She sleeps, but wakes unrested. We were referred to a neurologist who ordered a sleep study - that was fun! My daughter was a trooper (this earned her a shopping trip at Hot Topic - her new fave store - she ended up with a blue stuffed shark backpack and a t-shirt with a pink bunny of some sort on it) - with a million wires attached to her head and body. The results were all normal. Ok - so what does that mean? Why is she so tired after sleeping for 10-12 hours at a time? The neurologist said that she suffers from physical anxiety caused by her sensory issues - basically, her brain doesn't completely shut down when she sleeps. His suggestion - a prescription! Who didn't see that one coming? I didn't expect it in the first five minutes of discussion - but I guess I'm an optimist. He wanted to prescribe her Abilify - Ok - hold the phone - back the f@#k up - he wanted to put my 12 year old daughter on an anti-psychotic drug to help her sleep! As I've said before - I've opted for a drug-free treatment plan for my daughter - and other than the sleep issue - I think we've made great (if slow) progress. I'm not advocating my approach for anyone else in my situation - this is a personal decision that every parent has to make on their own, based on what they feel is best for their child. My fear stems from the knowledge that these drugs will alter the chemical balance of my daughter's brain - at 12 years old! This will force her to be in a constant battle of regulation of the drug to keep her balanced. I've spoken to many parents who have told me horror stories about Abilify - oddly, they kept their children on the drug - believing that the doctor would figure it out. In the meantime, there were suicide attempts and institutionalization. When I told the doctor that I would decline his kind offer, he told me that drugs were his only tool and that he couldn't help my daughter without them. Then he told me I should take her to a psychiatrist. I told him that she saw a psychologist weekly, he said that I should incorporate a psychiastrist as well - so that they could work together for treatment - yeah right! So that I could be pressured by yet another medical professional peddling their wares!! I declined that suggestion as well, as I see no benefit in seeing an additional doctor who would add nothing to my daughter's treatment plan - other than convincing me that she needs drugs.

The other thing the neurologist told me - which I did find helpful is that my daughter should have an MRI. This will give us a good look at what's going on in her brain, which he thinks might have some signs of injury due to her premature birth. She'll have to be under anesthesia - which scares me to death - but I think it'll be helpful in the long run.

All of this lead me down the thought process - how many times does a doctor tell parents that he has no idea what's wrong with their child, but he feels that a psychotropic drug would help? And more importantly, how many parents agree, without even considering that they need more information before making that decision? I think that ADD/ADHD is slapped on too many children as an easy way for parents and doctors to deal with children who are different or need to learn in a different way. I have a great friend who's a teacher - he shared with me stories of having parents come to him on a regular basis to let him know that their child might be "off" that day because he or she forgot to take meds, didn't take meds over the weekend or was having meds adjusted. At times he has to send children home because they can't function in class. He teaches the fourth grade. I also read a story on the California prison system, that quoted one professional in the system as saying that over 90% of inmates in for non-violent drug offenses were on Ridalin or some other psychotropic drug as a child. I don't want to sound judgmental - I understand how painful it is to deal with a child that's difficult or "different" in the eyes of the educational system or even disruptive at home - being a parent is hard enough without the added pressures of these types of issues - it's exhausting! So, when a doctor or education professional tells a parent that they can help - the knee-jerk reaction is to grasp at it. All I'm saying is that parents should - stop - take a deep breath - ask as many questions as possible and educate themselves on the medication before making a decision that will affect the quality of their child's life (either positively or negatively) for the rest of their lives.

Also - is this neurology? I thought it was supposed to be a highly sprecialized medical field with the best of the best at the helm. I think they can do much better that what I saw last week.

Remember - DIFFERENT IS BEAUTIFUL!!

May 19, 2010 - BURNOUT

It's been a while since I've last written. I had a lot going on where my daughter is concerned at the time and I definately burned out. Since my last post, my family had to deal with the death of a loved one. It was interesting watching my daughter react to the situation. Because Aspies typically lack empathy, its often difficult to gauge how she's feeling in stressful situations. She'll often take on a very flat affectation that shows nothing. This time was no different, other than she kept her distance from the rosary and funeral services. She wouldn't attend either. She told me that she can't be around that much sadness all at one time. This led to a discussion about life's difficulties and how sometimes we all want to hide from difficult situations, but need to rise above the resistence and work through it. I think it registered because today one of her friends at school got word that her grandfather had passed away. My daughter gave her condolences and volutarily hugged her! I was very impressed with this appropriate reaction to the situation, and felt some positive reinforcement that our talks don't go unheard.

In addition to this we've been working on getting her through the last few weeks of school. Her attendance has been horrible so our last IEP meeting was disastrous because all the team had to say was that I wasn't getting her to school and therefore, they were essentially exempt from implementing accomodations. Then the program specialist told me that the district isn't capable of making teachers implement accomodations, that's the job of the principal. Well our principal is about as capable of that as a freakin' kindergartner. My repsonse to this is to just implement the accomodations myself. I go to the teacher, tell them what I expect and it's been working. The tough part is getting my daughter on board. I can make all of the accomodations available to her, but if she won't do the work - it's all for nothing.

On the medical side of things, we've been seeing a neurologist and have a sleep study scheduled for next week. After that an MRI and then we'll see what happens. Sleep continues to be an issue for my daughter and I have a strong feeling that that's the root to a lot of her problems concentrating and getting to school.

Anyway - I'm still feeling pretty emotionally depleted and hope to be able to pick up writing on this blog more regularly and more interestingly soon - please continue to follow and bear with me for a bit longer.

Remember - DIFFERENT IS BEAUTIFUL!!

April 30, 2010 - TAKING A STEP BACK

Sometimes I get so involved in being an advocate for my daughter that I forget to just be her mom. I've noticed lately, that while I've been extremely active in IEP's, doctor's appointments, parent support groups, lectures, reading material on Asperger's, etc. - I've been lagging in checking in with her. Homework has suffered, focus on school is decreased and I've noticed that she's pulling away from our normal, everyday conversations - our silly time.

While I was sitting in a lecture at UC Davis's MIND Institute, I realized that I was in way over my head. Do I really need to know who Piaget, Kohlberg and Gilligan are? Seriously. Do I need to understand the prefrontal cortex? Do I need to know that higher abstract reasoning usually equals better friendships? Hahaha!! I would say no.

I understand that my daughter's brain is wired differently - and I think that my need to be better educated on Apserger's than anyone else that I come into contact with during advocacy for my daughter has led me astray. My thought was that if I know everything that there is to know about Asperger's, the when someone is talking to me about services, interventions and accommodations for my daughter, I could always be one step ahead if they tried to pull one over on me. And I could agree or disagree with recommendations from an educated place. Now - I still think that this is very important. Understanding the disorder and how it affects my daughter is key to getting her appropriate interventions in place. I won't move away from that position, and I'll continue to read about and research interventions, and practical solutions to the barriers and issues that we face.

More importantly, however, rather than sit through another lecture on the biophysical structuring of Asperger's, I'll have dinner with my daughter and encourage her to order her meal on her own. I'll play tic-tac-toe with her on the napkins and I'll laugh at her ridiculous word choices when we play hangman. I'll pay attention to her homework schedule and I'll tell her about other children and individuals with Asperger's and we'll work together to understand the world and how she can successfully live in it.

I'll leave the discussions on cognitive control and executive functions to the scientists and I'll focus on being a mom to a daughter who just happens to have Asperger's.

Remember - DIFFERENT IS BEAUTIFUL!!

April 27, 2010 - LAY IT ON THE LINE

Yesterday morning started with me freaking out and in tears. I even wrote my ex-husband an email railing at him for not coming on board with my daughter's Asperger's. He sends gifts at holidays and a check every month, but other than that, he's checked out. That's a different story and not one that I want to discuss right now, though parental alienation would be a good topic for a later post. What I want to talk about in this post is why I was freaking out.

Yesterday my daughter and I laid it all on the line. A couple of weeks ago she had an incident with a girl that threw her for a loop. I discussed this in an earlier blog. At that time, because I didn't know what else to do - I asked her if she'd like for me to speak to some of the students at her school to help them understand Asperger's and the role that it plays on communication and social skills. We had always taken the approach that no one other than teachers and administrators needed to know, so I was hugely surprised when she said yes - that if it would help people understand her and be nice to her, she wanted me to talk to her class. I spoke with the principal and she agreed that it would be a good idea to speak with the 7th grade class, so she arranged to have the kids broken up into two groups during first period which is a "free period". Also, my daughter doesn't attend first period, so I could give the presentation without her being there. My daughter and I also agreed that I would give the presentation on Asperger's and a bit on the autism spectrum in general terms without mentioning her by name - but if kids asked me specific questions, I was allowed to answer them as they relate to her.

So all of this sounds relatively easy right - I mean, I can rattle off facts about Asperger's from the top of my head. The problem started when I started doubting the kids who would be listening to me. What could I say? And did I want them to know that my child has a disability? And most importantly, would the presentation have the opposite effect from what we intended? Would kids start making fun of my daughter because of her differences? On top of this, I spoke to a mother of a set of twins with Asperger's a couple of days before my presentation - wrong move! She scared the bejeezus out of me. I felt completely defeated and incompetent after that conversation.

After berating my ex-husband and doing a bit of meditation, I felt much better. What I realized was that each parent's experience is different because their child - and as a result, their needs - are different. I'm also reading the book Living on the Spectrum which has a section on speaking with your child's classmates. I found this after I'd agreed to do the presentation, so I was really happy to read about success stories and strategies of other presentations. I tried to put all of this into perspective and remember that advocacy on my daughter's behalf could only help her, and possibly other children with differences.

The two things that I wanted to get across, even more than understanding of Asperger's and autism spectrum was COMPASSION and TOLERANCE. So, I gave them a few statistics about autism and Asperger's and then spoke to them about the anxiety that individuals with Asperger's feel related to social situations and how their interactions with individuals with differences were hugely consequential to those individuals. I'm very happy to report that most of the kids were extremely interested in what I had to say, they asked a few questions and one girl informed the group that her father has Asperger's. My daughter also reported that more of her classmates took the time to just say hi. There were not seismic shifts, but she does seem hopeful. Whew! Sometimes you just have to lay it all out and take a chance that others will receive what you have to say.

Remember - DIFFERENT IS BEAUTIFUL!!

April 26, 2010 - WHAT THE F@#K!

I haven't written in 10 days. I hope that people are still following. We lost one of our precious family members last week and the world became a bubble of sorrow.

Last week, while in the throes of trying to help my family through a really tough time I had an IEP scheduled for my daughter. It wasn't an ordinary IEP because her therapist was going to be there. This scheduling had taken months, so I decided that I wouldn't cancel the meeting. In attendance were the program specialist, the speech therapist, the school psychologist, my daughter's therapist, one of my older daughters and myself. The principal showed up half an hour later.

The school psychologist started by handing out results of a BASK assessment. This is a simple test of scoring your child on a scale from NEVER to ALWAYS on a wide variety of personality and behavioral traits. It's given to parents and teachers to complete. The child also self-assesses. According to the results of this test, the school psych interpreted that my daughter would qualify for services as an EMOTIONALLY DISTURBED child. Get the FUCK OUT!! Excuse my language, but I really can't think of a more appropriate response. When we looked at the results, it was possible that each aspect of the test taken separately might suggest an emotional disturbance - and saying this is a stretch. Together, the assessment might as well have spelled out ASPERGER'S. But the school psych isn't qualified or experienced enough to make that assessment.

I looked at our therapist and she just shook her head. I went ape shit. I stayed as articulate and professional as possible, but I made it perfectly clear that a label of emotionally disturbed was not to go anywhere near my daughter's file. I also made it clear that the school psychologist, who admits to having no experience with autism, wasn't qualified to assess my daughter or her needs. When I tried to discuss the ADOS test that had been used initially by the district to assess my daughter, and my dissatisfaction over the results - which basically said that my daughter isn't "educationally autistic" - the program specialist and the school psych couldn't have the conversation with me because they're not versed on autism spectrum disorders or Asperger's. So explain to me - why are they there? Why am I trying to get my daughter services as a student on the autism spectrum from a team that isn't qualified to make a decision on needed services and don't understand the disorder?

Our therapist jumped in and made it clear that her professional experience with my daughter - who she has seen every week for eight months - did not support a diagnosis or assessment of emotional disturbance. Thank God she was there. At that point I asserted my parental right under the Education Code to have an outside assessment done. I also found out that none of the accommodations that we discussed two months ago have been implemented. There has been no assessment for full inclusion, nothing. Here we are in April - with just a few weeks of school left and we've gotten nothing done and no improvements for my daughter. Another year gone - wasted! The program specialist actually asked me what I wanted out of these meetings! How about some measures of success? I want to know exactly what the teachers have done and what the results of those accommodations have been. Is that too much to ask? Who's providing leadership to the teachers on this? How are they being trained to implement?

As a result, the meeting was "tabled" until May - at which point we'll probably start all over again. Our therapist was so appalled that she agreed immediately to be at the next meeting, which will probably include a lawyer as well. I left there feeling flabbergasted, frustrated and just plain pissed off! But you know what? It lit a fire in me. I'm keeping my head down and just pushing forward. I talked to another parent, who has many more years of experience in this struggle and many more resources, and she made it clear that it's a constant struggle. I'm ready.

These people better get prepared, because I'm now the most pissed off and determined mother that they'll come across for quite some time. Emotionally disturbed, my ass!

Remember - DIFFERENT IS BEAUTIFUL!!

RIP Felix Medina - age 20

No posts this week - we lost a sweet boy this week to senseless tragedy. Hug your children, tell them that you love them everyday and make sure they know how big the world is.

April 16, 2010 - FOLLOW YOUR INSTINCTS

My daughter had a field trip today to the San Jose Tech Museum. She was incredibly excited about it - she loves anything science, and this is a hands-on museum. We even made it to the school by 6:45 am - which is horrendously early for any field trip! Once we were there I scoped out the group and watched my daughter interact. No surprises, she retreated to the side of the room with a flat expression, waiting to be told where to go. I looked at the list of girls that she would be driving with - I didn't recognize any of the names, but one of the girls had participated in the Renaissance Faire with my daughter and her mom was driving, so I thought it would be a good fit for her.

Then, the inner struggle started...Should I go speak with the mom and tell her that my daughter is an Aspie? Should I try to get her into the car with a girl I know has been kind to her? Or, do I just let her go and trust that she'll be able to handle it? This was a lose-lose situation. If I spoke with the mother, she might feel obligated to "baby" my daughter, which would make her feel uncomfortable. If I didn't speak with her, my daughter's needs might not be met. I opted not to say anything - I reasoned that the teacher was there and he's very informed on my daughter's disorder. I repeatedly reminded her not to wander away from the group, and to try to have a conversation with the other girls. This turned out to be the wrong decision - OF COURSE! One of the comorbid conditions that my daughter has is a speed processing delay, which means that it takes her a bit longer to process information and get it down on paper. She also gets hyper-focused - especially in hands-on museums. This field trip included an assignment, where the students were required to answer questions about specific exhibits on a form, to be turned in on Monday. Well - the other girls were rushing through each exhibit, with my daughter trailing behind. She couldn't get the information that she needed to complete her assignments, and more distressing to her, she didn't get to touch any of the exhibits. When she tried to tell the other girls, a couple of them got snarky and told her that was on her and it was her problem. I always assume that other children will show kindness to my daughter, and I'm always disappointed that they don't. On a side note - this is why children and educators MUST be educated on autism and Apserger's. Maybe with knowledge will come compassion and tolerance. I can't tell you the number of times that my daughter has been mistreated by a teacher or other students. It's no wonder that she's non-verbal in these situations.

Ugh! I should have followed my instincts. I should have taken the mother aside and told her about my daughter being an Aspie and told her that she might need a little extra encouragement or time to complete her assignment and look at each exhibit. Better yet, I should have just gone on the field trip with her. It's so hard to find the balance between being my daughter's advocate and encouraging independence. I know that I can't be at her side at all times and I think that she enjoys going off on her own once in a while. And no matter what happens, she's always excited about field trips and school activities and is eager to participate. She has amazing resilience. So - my lesson learned for today? Follow my freaking instincts. If I come across as over-protective, so be it! When I asked my daughter how she felt deep inside about the experience, she said "I didn't have an experience! And deep down I just feel aggravated". She wasn't aggravated at the mean girls, she was aggravated that she didn't get to fully participate in the activities. I promised her that I'll take her back to the museum for the entire day in the Summer so that she can touch every exhibit and spend as much time on each as she likes.

When I speak with my daughter about these types of experiences, she doesn't seem to have any lasting emotional distress over them, but I feel like each experience is a brick that goes on the wall that she's slowly building around herself. On this note, I'll quickly say that for these reasons, it's so important for girls with Asperger's, especially adolescents to have access to quality programs that include other girls with the same or similar disorders. There are no gender specific programs in our area, which is something that I intend to address - I'll blog about that later.

So, moms and dads - no matter how educated and informed we become on Asperger's and the appropriate interventions - the most important thing that we should rely on is our instincts.

Remember - DIFFERENT IS BEAUTIFUL!!

April 15, 2010 - MUST READ

I'm reading a great book right now. It's called Growing Up on the Spectrum: A Guide to Life, Love, and Learning for Teens and Young Adults with Autism and Asperger's. It's very easy to read and has great practical solutions to a variety of issues for parents and educators. I highly recommend it for parents like myself who have a pre-teen - resources and traditional solutions start to lose their mojo at this point - so it's great to have suggestions that are age appropriate.

Happy reading and Remember - DIFFERENT IS BEAUTIFUL!!

Missing Girl with Asperger's Found

Earlier this week searchers found an 11 year-old girl with Asperger's who had been missing in Florida. She's a "nature nut" and had wandered into the swamp on some sort of adventure. Thankfully, after a three day search, she was found safe deep in the treacherous waters of the Florida swamplands. This is a reminder that while our loved ones are "high functioning", they can often wander into very dangerous situations. I've posted a link to the article detailing the ordeal in the Articles section if you'd like to read more.

Resource - Webpage

Your Little Professor is a website dedicated to providing information and resources for children with Aspergers. There's a ton of information on everything from eating habits to sleep patterns. As with all information, it's not gospel - I found several interesting points that I'd like to research further. I hope it's helpful.

Click here for more info:

April 13, 2010 - CO-PILOT

I think of myself as my daughter's co-pilot - her navigation system. She often finds herself in uncharted waters, and while she's getting better she still has trouble navigating those blurry middle school social waters.

We had an incident today that really began last week. My daughter tried to enter into a conversation that some other children were having about rap music. She thought about it first and really wanted to join the conversation, so she decided to chime in. Unfortunately, what she said was "I hate rap music". And when the conversation turned to Lil' Wayne, a rapper who was recently imprisoned on gun charges she asked "Didn't he just go to prison?" - When they answered yes, she said, "well, doesn't that make him a criminal?" Ok, maybe to me and to you this is a perfectly acceptable opinion and question, however, the other children were offended because they're big fans of rap music and Lil' Wayne. She just didn't recognize the change in body language towards her when she made the initial statement, so didn't understand it might be better to back off that approach to rap music in that particular conversation.

Then today, one of the girls from the first conversation confronted my daughter by asking her why she hates black people. My daughter was confused, and told her that she doesn't hate black people. The girl then told her that if she hates rap music, she hates black people. My daughter then told her that that was the "stupidest thing she'd ever heard". As you can imagine, that didn't go over well and things escalated from there. My daughter kept saying "you're not making any sense!" Because she's literal, some insults that aren't direct kind of go over her head. The girl came out of her chair and stood over my daughter's face while confronting her, yet when I asked her if the other girl was aggressive, she said no. I would interpret someone coming out of their chair and getting in my face as aggressive - but not someone with Asperger's. The whole incident was more confusing than scary because she didn't understand the initial confrontation.

On the way home from school, while we were talking about the incident my daughter became increasingly upset and began to cry because she was hurt and confused. Come to find out the girl also asked her why she hates people. My daughter was completely incredulous. I tried to explain to her that her confusion about the situation and her response were part of her disorder and that it's harder for her to understand what people are thinking/saying. For the first time she said that she hates having Asperger's and wished that she didn't have it. She also acknowledged that she would have it for the rest of her life and that there's nothing that we can do to change that fact. I told her that we can change it - trying to explain to her that with treatment and hard work, she can do just fine - that she'll have to think things through a bit more, but otherwise, she would be ok. She cut me off, saying that there is no cure.

Ugh!! What do I say? I told her that the other kids don't understand that she has Asperger's - that they don't understand her way of communicating. Then I asked her if she'd like for me to speak with students to explain to them what Asperger's and autism mean to students like her. I'd never thought to do this because I thought she'd rather other students not know. But as usual, she surprised me by saying that she'd like me to speak with her class if it would make things easier for her. WOW!

So, now I'm off to research the best way to educate middle school children about Asperger's and autism. This is something that should happen in all schools. With the rate of diagnosis rising at an alarming rate, all students are going to come into contact with individuals with differences. Tolerance and compassion should be part of the education vernacular, anyway.

Remember...DIFFERENT IS BEAUTIFUL!!

April 11, 2010 - VOTE FOR ALEX

I recently met a family with a son with Asperger's Syndrome who is truly inspiring to me. Their son, who is now 19, was diagnosed at age 6. With lots of interventions and appropriate resources - not to mention the love of his parents and siblings - this young man is now attending Cal Arts. He and his friends have been working on animated videos for entrance in a contest for PDA's for International Disasters. I'm attaching a link for his video that has made the FINALS!! Please vote and leave a comment as well, if you'd like. He's a great success story and is proof that while the road might be rocky, the journey is worth the work.

VOTE HERE!

Remember - DIFFERENT IS BEAUTIFUL!!

April 10, 2010 - SIGH OF RELIEF

We went to a barbecue last night where there were mostly adults in attendance. I was a little unsure how my daughter would interact with other guests, because she didn't know most of them. I was amazed by her yet again. She participated in conversations and laughed at jokes and funny stories - she even told a couple herself. She did speak a little louder than necessary and got a bit hyper-excited a couple of times. She also interrupted others occasionally, but she tried really hard. I could tell she was making a concerted effort to wait her turn to speak. After the week we had, it was a blessing to watch her - it felt great to be able to sit back and enjoy myself without worrying about her.

Our hard work pays off sometimes - most of the time, actually.

Remember...DIFFERENT IS BEAUTIFUL!!

April 8, 2010 - TWIRLING

My daughter likes to twirl - turn around and around in circles until she's dizzy. Then she keeps going. The therapist says that she's self-regulating. I know this. I KNOW!!! Stress creates a need for her to do this. If she wasn't allowed to self-regulate, she'd feel infinitely more anxious. I KNOW THIS, TOO! So why do I feel so sad that she does it? Is it because I know that when someone outside our circle sees her, they'll judge her as impaired? Is it because I'm afraid that someone will make fun of her or hurt her because of her differences? Probably, yes to both questions. For all of my preaching that "DIFFERENT IS BEAUTIFUL", I still feel sad and scared for her. I want so much for her to have a productive, happy and satisfying life. I believe that this will happen, it's me who has to change my view of what that means for her. Me - I have to accept that her life is her own, and that she'll define her own successes. It's my job to protect her whenever possible, to teach her life lessons that might not be as obvious to her as other girls, and to make her feel safe to be who she is.

I'm not a perfect parent. I still feel grief and guilt over my daughter's disorder. Every parent wants the perfect child - of course none of us get one (and if we think we have one - we're delusional!). I love my daughter - I love her with all of my heart and soul - but I'm afraid for her and I'm afraid that in addition to all of the barriers that she'll undoubtedly face, I'll fail her as well, because I can't let go of my pre-conceived idea of what she should be.

But, when I strip away my own ego and see her twirling through an untainted lens, that twirling girl, with her hair whipping out around her is the most beautiful thing in the world.

I have to remember...DIFFERENT IS BEAUTIFUL!!

VIDEO

I've posted an article and video of surfer Clay Marzo, who is the subject of the Rolling Stone article that I referenced yesterday. Take a look. Oh, by the way - the lead in sucks! My daughter was truly offended by it. They kept referring to his Asperger's as a "medical condition" - hahaha!!! The rest is great, definately worth watching.

APRIL IS AUTISM AWARENESS MONTH

April is Austism Awareness Month - no better time to learn more about Asperger's and the autism spectrum. I've added several links to articles which have an enormous amount of information. Statistics and resources continue to fluxuate - continued education is key to our effectiveness as advocates for our loved ones with Asperger's.

Remember - DIFFERENT IS BEAUTIFUL!!

ROLLING STONE ARTICLE

There's a fantastic article in Rolling Stone's latest issue detailing the life and limitations of a surfer with Asperger's. It shows how the obsessive presentation in Aspies can give them great accomplishment and joy, but also shows that when those accomplishments lead to expectations from others - the inability to navigate social and competitive norms can create overwhelming anxiety. Here's the citation:

Solotaroff, Paul. "The Surfing Savant." Rolling Stone 15 Apr. 2010: 54-61. Print

Resource for Girls 10-18 Years Old

Drama & Social Skills Workshops for Girls (10-18 yrs) - Sacramento Area

A series of drama and social skills workshops have been organized for girls! The workshops are being presented by Amelia Davies and John Stamm, who are well known by FEAT parents for their fun & innovative drama/social skills classes that have helped many young folks to shine in this new form of self expression.

These workshops are being offered at this time for girls only, ages 10-18, who may or may not have an identified disability. It is a fantastic opportunity for our daughters and students to practice peer interaction in a playful and comfortable manner.

The class needs a minimum of eight students to actually take place. We currently have four interested in attending. Please pass this along to anyone who you think might be interested or for more information, please email girlwithaspergers@gmail.com.

April 6, 2010 - FULL-BLOWN MELTDOWN

Yesterday was a good day. My daughter made it out the door and to school without incident, she had a healthy, balanced dinner - and best of all - Girl Scouts. This particular meeting was especially important because the girls were able to bring their pets to the meeting. My daughter was chomping at the bit to get going. The meeting went well, the dog only slightly misbehaved and we were home early enough to get some homework in.

Then - a trauma. My daughter was sitting on the couch with her pug puppy on her lap, when the other dog (also a pug) jumped up and tried to get my daughter's attention. The dogs began to seriously attack each other. That was the first time that the dogs had ever behaved that way, so she tried to break them apart. I was on the phone at the time and tried to stay on the phone and pull them apart, unsuccessfully. When I pulled at the dog, I also pushed at my daughter, trying to separate them and I accidentally pushed on her throat instead of her chest. My only goal was to separate the dogs and to get them away from her, but in her mind the chaos of the dogs attacking each other (one of them bit her hand), and me pushing her was too much. She kept asking me why I'd pushed her throat. I kept telling her it was an accident, but she couldn't register it.

This led to hysteria and hyerventilation, to the point where I thought she was going to pass out. The skirmish only lasted a couple of minutes, but the aftermath lasted for the rest of the night. My goal was to get her calm enough that she could get her breathing regulated. I tried sitting and talking with her very calmly, putting her hand on my chest so that she could feel my calm breathing pattern - I just couldn't get her calmed down. Everytime she remembered what happened, she'd get upset all over again. I kept telling her that the dogs were fine, that she was safe and reassured her that I was there for her. Finally, after an hour or so, she calmed down, though she was completely shut down afterward. She emotionally checked out - which is common for her after a full-blown meltdown. It's kind of a blank stare - she's responsive, but not fully engaged. It generally takes her the rest of the day to recover, which could mean missing school. It's best to give her time to veg out or sleep for a time to recharge her batteries.

These meltdowns are always scary and it's painful to see her in so much pain and turmoil - especially when I know that most people would just process the incident, and might be shaken, but not completely knocked out by it. As her parent, I want to cry right along with her and beg her to be ok, to just stop - it all seems so surreal when its happening. Ultimately, these incidents are rare these days - but they're a reminder that we're not out of the woods just yet. Each one can be a lesson, if we take a careful look.

Remember...DIFFERENT IS BEAUTIFUL.

April 5, 2010 - GETTING OUT THE DOOR

Getting out the door on time for school is always hit and miss for us. My daughter is NOT a morning person. She's nocturnal by nature and has trouble with quality sleep. That said, she's also quite the pill if she's rushed in the morning - she has to be eased into the day.

Our routine goes like this - I spend about 15 minutes waking her up. I try, then walk away, come back and try again, walk away - and then usually on the third try she's awake. I make sure that I ask her if she wants breakfast first thing (usually cereal) - and yes, I let her eat in bed during the week. After that she's awake and ready to start the day. Since she could care less about what she wears to school (other than comfort), I'll generally have her pick out what she's going to wear the night before or, I'll admit - I'll pick something out and lay it on the bed. She dresses (usually forgetting shoes), then I remind her of every detail - to brush her teeth, brush her hair, put her socks and shoes on - and all this time she's constantly distracted by something else, usually her animals (three dogs and a cat) and I'm re-directing her attention to the task at hand. After she's fed and dressed, it's on to the backpack - which by the way is ridiculously heavy - to make sure that she has all of her books, assignments and homework. She also has to have the book that she's reading with her at all times - so we have to make sure that it makes it into the backpack. Also, we have to make sure that she has her phone, her inhaler, a pencil and whatever chotsky that she's attached herself to at the time. After all of this we head towards the door, but then the "good-byes" and loves start with each of the animals. She has to pet and kiss each one - and then FINALLY, we're out the door, her backpack has to go in the truck of the car, not the backseat - and then fifty percent of the time something is forgotten and I run in to get whatever it is -and run back to the car - and we're off. Once at school I drop her off in front of the school and have to wait until she's in the school building before I can drive off. If I drive off before she's in the building, she'll call me and ask me why I drove off before I was supposed to. This really upsets her, so I wait the few seconds that it takes.

This probably sounds insane to most people, but it's a routine that works for us - and it certainly beats the morning tantrums that I experienced several times a week when I was working. Each family has to come up with their own routine - but I guarantee that once it's established, it will create a system of control that's manageable vs. the chaos that once ruled. Ultimately, my goal is to make sure that my daughter is a self-sufficient, regulated person on her own, but without the established routine, she seemed to flounder. Next up - letting her get out the door before she realizes that she doesn't have shoes on.

Remember - DIFFERENT IS BEAUTIFUL

April 4, 2010 - HAPPY EASTER!!

I love holidays - I love parties in general. I always go overboard, taking the time to decorate, set tables and plan games and activities. All of my daughters laugh at me - though they love it. And though they're older now - if they live in my house, the Easter Bunny leaves them a basket.

HOWEVER, for several years holidays were a scary proposition for us because they always ended in a huge tantrum by my daughter. From the time that she was four until she was ten or eleven, I don't think that there was a holiday that didn't end with me dragging her out kicking and screaming. To add to the stress, most of that time I also had to deal with my family thinking that she was spoiled and rude and that she somehow deserved it when another child hit her or the group ostracized her. All they saw was the end result, not the gradual building of anxiety that facilitated the tantrum. And I'll admit that for many years I didn't understand it either.

What I eventually learned about my daughter, even before her diagnosis of Asperger's, is - in those situations she was extremely over-stimulated. She couldn't handle the loud conversations, the loud laughter, the mix of people - all wanting to shake her hand or hug her at hello. She'd been attending big family parties since infancy, yet all of a sudden she couldn't handle it. She would start out well, but would soon start to act agitated, rejecting adult interaction (which made her seem "rude" to other adults and honestly, embarrassed me) and when I'd tell her to go play, she would ultimately end up in a skirmish with one of her cousins. Because she was crying and upset, I would try to quiet her down, which would make things worse because (and this is very important) I wasn't "hearing" her. She needed a voice, she needed to tell me what she felt and needed, but she didn't have the vocabulary to articulate that. She was just overwhelmed by anxiety and the tantrum would escalate to the point of my other daughter hurriedly grabbing all of our things and me physically dragging her out. Once she was away from the situation and calmed down, she would immediately become very remorseful, apologizing over and over. She didn't understand any better than I did why she behaved in such a way.

At first I started declining invitations, we would make plans for our family alone at holidays, or miss birthday parties - but my family, including my daughter, missed the big crazy family get-togethers. So, we came up with a trial plan that included her Nintendo DS and her earbuds. If she could make it through the hellos, she could sit somewhere and play her DS with her earphones in. And it worked! She wanted to be around others, and was able to be without the noise causing her anxiety. I also started making sure that there was a room where she could go to be alone for a while until she felt calm enough to re-join the party. This headed off the tantrum because she was self-aware enough to recognize when she was feeling anxious. Gradually she would join the other children, and move back and forth between her spot with the DS and the playroom. Once we had the diagnosis and I started researching and learning about her disorder, I understood that the touching, noise, smells and other stimuli were just too much without some sort of accommodations in place to make her comfortable. Other examples are no hugging without asking first (opening your arms and asking "can I have a hug" has become a staple at our get-togethers - and there can't be resentment if the answer is "no") and making sure that there's a food that she likes available so that she doesn't feel the pressure of trying to eat something that she can't stand. Another solution, which isn't always an option, is outdoor functions. The open space seems to really alleviate her anxiety. The weather was so good this year that we were able to do Thanksgiving in the backyard - this was a first for all of us, so it was fun for everyone.

Now, we host most of our family holiday get togethers. Not because of my daughter's needs, but because we love it. She loves the traditions (God help me if I try to change things around - Aspies are very regimented), loves the creativity of decorating and truly enjoys her family in her own way. Today we're hosting twenty-one family and friends - something that would have been impossible a couple of years ago. My daughter has planned all of the activities and plans on handling face painting on her own.

All of this has come from trial and error. It took us awhile to figure out what works and what doesn't and sometimes there are still tears and frustration, but the way that we handle the breakdowns and her recovery and ability to rejoin the group has become manageable. To add to the success of this part of our story - the fact that our family and inner circle has come on board with my daughter's disorder and they understand and respect her limitations - but most importantly they all love her just as she is.

So, Happy Easter and remember...DIFFERENT IS BEAUTIFUL!!

April 2, 2010 - IT'S OK!

I had the opportunity to go on a lovely trip to Half Moon Bay with my sister yesterday. It was a spur of the moment invitation and I had to leave right away to make a dinner that my sister was hosting. I really wanted to go - the thought of a hotel room on the beach, a bon fire, adult conversation and shopping was irresistible. But there were two glitches - the first, relatively easy to solve was that I'd promised my daughter that I'd take her to the zoo to see the new giraffe exhibit. My sister suggested that I just reschedule the zoo trip - my response -"yeah, it doesn't really work that way." I'd said that we would go and short of losing a limb, there was no rationalization that could get me out of it. So we went to the zoo early in the day, had a lovely time and got home in time for me to leave on my trip.

The second issue - not so easy for me to resolve. I was scared to death to leave my daughter overnight. What if she had a tantrum and my older daughter, who was staying with her didn't know what to do? What if my older daughter couldn't get her to eat? What if she couldn't sleep - would she know what to do? What if something that she had to have got lost? On and on and on I went with the "what ifs". But, I decided that I would go on the trip. I threw some things in a bag and started to head out the door, reciting instructions over and over again - I'm sure driving anyone within earshot insane. Then my daughter said "mom, why is it so hard for you to go have fun?" I felt like the world had been lifted off my shoulders (almost). Six months ago she would have been on the floor hysterical at the thought of me leaving her for the night, let alone for almost two days.

I still received a phone call at 1:30 am to let me know that she was going to bed and another the next afternoon to check in and see what time I would be home - and I could hear some anxiety in her voice - but she was sure to say "it's ok, mom - I'm ok". And you know what? It is - it's ok.

Remember - DIFFERENT IS BEAUTIFUL!!

Helpful Tips

SLEEP -
My daughter often has trouble getting sufficient rest at night, even with an appropriate number of hours of sleep. This isn't uncommon for children and indviduals with ASD. Her therapist suggested Melatonin before bedtime to help with the quality of her rest. After speaking with her physician, we started giving her one 300 mcg tablet about 10 minutes before bedtime and it's worked wonderfully. This is a dietary, natural supplement which is fast acting and non-addictive. Melatonin is relatively inexpensive and can be found at local WalMarts, drug stores and other vitamin and supplement shops.

March 31, 2010 - TO HAT OR NOT TO HAT

One of the best things about being the mother of a child with Asperger's is watching her live her life in her own zone. Her only compass is her own. If she thinks something is cool, then that's all that matters - striped socks, hamburger earrings, fingerless gloves, rainbow colored hair extensions, or yes, a certain hat - if it strikes her as fabulous, then it's on. This is part of what I'm speaking about when I say that children and individuals with Asperger's have a certain amount of freedom to live their lives without the burden of self consciousness. They need and deserve approval and validation from others, but not for the same shallow reasons as most of the rest of us.

My daughter loves hats. Not your ordinary run-of-the-mill hats - nope, she loves hats with faces, ears, fur, and eyes. Each new hat is awarded a special place on her head, day and night for about two weeks straight. After a couple of weeks she'll give it a rest and move back to one of her older favorites. Recently, she's sported a brown furry hat with ears, a panda bear beanie, a cheshire cat beanie with ears and eyes that glow in the dark and yesterday - the find of all finds - a white fur hamster hat with big ears lined in grey fur with big eyes and jagged teeth that come down over her forehead. I have to admit that I was the one who brought it to her attention in the store. Her face lit up and there was no way we were leaving without that rabid hamster hat. She put it on as soon as we left the store, wore it to the restaurant for dinner, wore it with her pj's last night and woke up with it this morning. And yep, it's sitting there on her head staring at me right now.

So, should I feel uncomfortable in public with my very tall 12 1/2 year old daughter in a hamster hat? Maybe, but you know - when I look at that beautiful girl in all her furry glory, full of pride over her cool new acquisition, all I feel is love and gratitude - and a little bit of envy.

Remember - DIFFERENT IS BEAUTIFUL!!

March 30, 2010 - BULLYING

Good Morning!

I heard some great news this morning! The state of Massachusetts just passed legislation making it mandatory for school officials and employees to notify the authorities/police of bullying and harassment of one student by other students. Unfortunately, this legislation is the result of the suicide of a 15 year old girl who had been bullied, harassed, threatened and terrorized in school and on-line. The girl's parents had spoken to the appropriate school administrators and they failed to put a stop to the harassment and did not notify the authorities when the abuse became physical. Nine students have been arrested on a variety of charges related to their victimization of this girl.

This legislation sets a great precedent and can be especially helpful to parents and loved ones of Aspies who tend to become the victims of bullying because of their differences and their inability to fit into mainstream social clicks. This is true in academic settings as well as the workplace.

Although Massachusetts is the only state to have this type of anti-bullying legislation, it can be cited as precedent when addressing school officials and work supervisors in all states - and while there may be no criminal recourse in other states, that's not to say that there's no civil recourse. There's nothing that a school district wants less than a lawsuit illuminating the fact that they're letting one of their students be terrorized by other students - especially in the face of the rash of suicides by students who have been victims of bullying and harassment.

I'm not saying that everyone should go out and sue a school district or employer if bullying is occurring, but I think that letting officials and supervisors know that this is certainly an option if appropriate action is not taken to stop the behavior can only work in our favor - and now there's precedent to cite, not only to officials, but possibly to other courts. I think the Massachusetts law gives us and if necessary, attorneys a great tool to use in support of victims of bullying.

Something to think about and another tool to tuck away in our arsenal!!

Remember - DIFFERENT IS BEAUTIFUL!!

March 29, 2010 - SCHOOL

Good Morning Sunshines!!

Spring Break - YAY! a break from the very regimented routine of getting my daughter out the door and to school. She'll get to sleep in, which is great because sleep deprivation is an issue for her. Although she generally gets 9 or 10 hours of sleep, she wakes exhausted (getting her settled in at night is a problem as well - she rarely goes to sleep before 11 pm). This is very common in Aspies and other individuals suffering from sensory integration disorders. Their brains just don't shut off as completely as non-Aspies, even during sleep. As part of her IEP, she doesn't have first period, which allows her to get to school an hour later - this accomodation has been a Godsend for us - so keep it in mind as part of an accomodation request. My daughter will be seeing a neurologist in a couple of weeks to make sure that she doesn't have a sleep disorder, just in case.

All of that being said - I want to share our history of how I realized that my daughter has Asperger's:

First, my daughter was a preemie - sensory integration issues are not rare in preemies - though at the time, I had no idea what sensory integration was. So, her motor development was a bit delayed, but not by more than what would have been her full term gestational period. Which basically means she was a couple months behind other babies her age. Also, her speech was delayed, not radically - but by a bit. Until she was three years old, she was a perfect baby - no terrible twos! Then at three years old she started having horrible tantrums, which I thought was normal, just delayed "terrible twos". Then it got to the point where nothing made her happy -she would literally scream non-stop - all the time. Unfortunately for both of us, I thought she was just spoiled and disciplined her accordingly. Can you say GUILT!!! Kindergarten wasn't bad, teacher said she was immature, which I attributed to her being a preemie and the baby of the family, still not too worried, other than I thought she was kind of a brat. First grade - bad. So I changed her school, second grade worse and third grade - it all blew up. She's had the worst luck with teachers, which I think is a problem with the educational system's lack of quality teachers AND the lack of training that teachers receive on autism and Asperger's specifically.

In third grade she started getting bullied by other children (boys) mercilessly. I noticed that she didn't get invited to birthday parties anymore and she told me that she spent all of her time at school alone. I recognize now that she was extremely confused and anxious about social norms and isolated herself rather than try to navigate the school yard social jungle. At the same time she started having tantrums before school and her attendance suffered. She is very intelligent, so she was able to maintain grade level knowledge, but she DID NOT want to go to school. I was pissed! I thought that her behavior was based on the bullying and the schools inability to rein it in.

Fourth grade, changed schools again - at the beginning of every year and especially at new schools, my daughter is very hopeful. She thinks that things are going to be different, the kids will be nicer, she'll try harder. Everything is better for a while and then the pattern of decline begins - reluctance to go to school, exhaustion, lack of organization and non-completion of classwork and homework - God, homework was and is a nigtmare. In her way of thinking - school is school and home is home - no school at home, which means NO homework. I tried everything - taking away priviledges, making her sit at the table until it was done - she would sit there for hours and not budge! Will of steel!!

At this time, I learned about Asperger's. She was clearly showing multiple signs of having Asperger's including problems navigating social situations, extreme anxiety and frustrations, which manifested in tantrums which included self injury, subject matter fixation, extreme sensory sensitivity - her socks and underwear have to feel just right, her clothing has to be soft enough, loud or competing noise drives her crazy, extremely picky with food, bright light is a no-no and DO NOT touch her without asking her first (can I have a hug? has become my favorite question) and generally lack of maturity for her age.

On the academic side, she was having a difficult time finishing classwork, I heard from teachers regularly that "she's very bright, but lazy and/or unmotivated." What I know now is that she has an information processing delay - which basically means that when she receives information, it comes in kind of jumbled and it takes her brain a bit to organize it - this creates difficulty keeping up with say, listening to a lecture and taking notes at the same time - or for younger students, writing down problems from the blackboard and answering them in a timely manner.

Ok, so I started asking teachers whether they thought my child might have something wrong, fourth grade teacher said maybe at the tailend of the school year, so in 5th grade I brought it up again following my first parent/teacher conference. This teacher said no, she was just immature and needed more discipline. At this point I started doing my homework and learned to become my daughters personal advocate. People I can't stress this word enough - ADVOCATE - you must become your child's advocate because otherwise, they will be brushed under the rug, passed along, misdiagnosed, mistreated - I could go on and on. The scary part is that time FLIES! So, by the time you've figured out what's going on, two - maybe three years have gone by. It's exhausting, frustrating work - but ultimately so worth it.

Ok, so fifth grade I get her a formal diagnosis of Asperger's and ask for an IEP. She ended up with a 504 plan instead of an IEP, mostly because I was an uneducated fool when it came to special education. No accomodations were made for her, her anxiety escalated and then BOOM we're in the 6th grade - another year, nothing accomplished. Keep in mind that she's scoring in the advanced level in most subjects regularly, so I kept getting told that she didn't qualify for special education. This is where "high functioning" comes into play. But at this point, I'd done my homework and insisted on an IEP - which was scary as hell and intimidating because I had a group of people using accronyms and language that I didn't understand. They told me that my daughter could not receive services or accomodations as an autistic until school psychologists assessed her and gave a formal assessment of her condition, even with a formal diagnosis from a psychiatrist. Now - this is important because California's school system hasn't jumped on the Asperger's bandwagon yet - they have services for austistic children and recognize Apserger's as being on the spectrum - but they're way off on diagnosis and assessment. They use the ADOS test - which is a test based on language skills and facial/physical responses to certain questions and social situations. So basically, it's based on social pragmatics - which define Aspies in many ways due to their lack of social graces. The thing that the ADOS doesn't take into consideration, especially with girls with Asperger's is that Aspies can have conversations, they can make and at times maintain eye contact, they're verbal, and at times verbose. Girls especially, learn to mimic social reactions and behaviors - this is why their diagnosis' often come later than boys, who are generally diagnosed at around 5 years. All of that said - the school district deemed that my daughter did not have Asperger's and therefore only qualified for services in speech therapy. Ok, WTF - I had two separate private therapists who had given me diagnosis, she was in private therapy for treatment as an Aspie and the school was telling me, "nope, sorry, can't help you, your child's not autistic". The important thing to know here is that if this happens to you and you're not satisfied with the assessment of the school disctrict psychs - you have the right to request an assessment from an outside source (psychiatrist) at the districts expense.

Then BOOM - 7th grade! But a ray of hope - she got into an art and language art charter school that's known for it's great curriculm and teachers and they have the best speech therapist in the district there. This is a speech therapist who specializes in social pragmatics and is an expert in Asperger's. She met my daughter and immediately recognized her as an Aspie. All should be right in the world, right? Wrong! Another IEP, inadequate accomodations, and no implementation of the accomdations that are in place. Same pattern starts - high anxiety, bad attendance, etc. The difference is that I was no longer willing to take what the educators were telling me as fact. My daughter now had a new therapist - so we're at three diagnosis' - and I know now exactly what accomodations need to be made. I've gone over it and over it with her therapist and I know my daughter very well. The problem was getting the principal on board, I couldn't get her on the phone, I couldn't get her to speak with the therapist so that an academic plan could be charted and most importantly, I couldn't get my daughter's accomodations upgraded and implemented.

So, recently I hired a lawyer. Because I can't afford to keep the lawyer on retainer, I met with her, paid the consultation fee, plus her fee for one hour and told her about my plan - which was to give the impression that I had a a lawyer willing to sue the bejesus out of the district if things didn't start moving along. She wrote a very, very intimidating letter to the Superintendent and the pricipal - who was on the phone to the lawyer within an hour of receiving the letter (we faxed it). Within a couple of days I had a new IEP meeting scheduled, district employees all over me and I'm happy to say that most if not all accomodations have been put in place. This isn't to say that things are perfect, but they're finally moving in the right direction. I've committed to being the biggest pain in the school's behind if that's what it takes to keep things moving forward and I presented a united front, which included the lawyer, the therapist and myself, as my daughter's advocate. Remember that word - ADVOCATE! It takes time to educate yourself, I read everything I can find on Asperger's so that I'm as knowledgable as the expert so if they say something that I don't agree with, I can call them on it. Also - stay organized, keep everything ever given to you regarding your child' condition. And know your rights and the rights of your child. You have to stay one step ahead.

So - here we are - up to date.

I know I've given alot of information - whew! But I hope that some of you recognize yourselves in this story and won't hesitate to ask questions about the educational process or make suggestions on how we can avoid the setbacks that I experienced. We can all benefit from each other's successes and frustrations.

Later posts will include my experiences and our lessons learned while improving my daughter's quality of life at home, the quality of our family life and how we've succeeded in bringing a very loud, physically demonstrative Latino family on board so that my daughter can experience all the beauty that that family has to offer without stress and anxiety - most of the time.

And of course - this battle isn't over - it'll continue for a lifetime. I expect to experiene setbacks and successes on a regular basis, but they'll all add up to valuable life lessons. Remember - DIFFERENT IS BEAUTIFUL!!

Books, Movies and TV

This is a very short list of books, movies and television that deal with Asperger's right now. Autism is a word that has become universally known - Asperger's Syndrome is just coming into the mainstream, with recognition that it falls on the autism spectrum. I'll continue to post articles, books and other media sources that I think are relevant. Please also do the same.

Books:
- Socially Curious and Curiously Social
- The Best Kind of Different: A Family's Journey with Asperger's
- Look Me in the Eye (recently recommended)

Movies:
- Adam
- Temple Grandin (HBO)

TV:
Parenthood

Great articles

http://autismaspergerssyndrome.suite101.com/article.cfm/girls_with_aspergers_syndrome

http://www.newsweek.com/id/168868

http://autism.lovetoknow.com/Aspergers_in_Girls

March 28, 2010

Ok - so this is our first post. My goal for this blog is for families and individuals living with Asperger's to come here to share their ideas, successes, questions and frustrations with the rest of us. We're a community different from other communities, because we're on the front lines fighting individual battles to find resources, support and methods of living with Asperger's that will provide quality of life, happiness and success. Our children and family members are usually high functioning, intelligent indviduals, so resources are often limited. Misdiagnosis is common, therefore treatment is spotty and inconsistent - creating more frustration and anxiety for the individual living with ASD - not to mention the distress caused to parents and families who feel like failures at every turn.

There are so many issues that we can discuss - to name just a few:
- education
- sleep issues
- social akwardness
- tantrums
- sensory integration disorder
- family and group participation

Okay - this list could go on for a while, but you get the picture. I hope that we can share stories, practical solutions, successes and frustrations so that we can help and learn from each other. In addition, I'll be posting my daily successes and setbacks with my daughter. And most of all, I want us all to recognize the beauty and freedom that comes with ASD. My daughter views her life through her own lense and she teaches me everyday that though life is hard and confusing - DIFFERENT IS BEAUTIFUL!!