December 2, 2012 - WTF?!

I read today that the American Psychiatric Association has decided to drop the diagnosis of Asperger's Syndrome Disorder from their diagnostic guide. I have serious concerns about this as it relates to the treatment that will be available to my daughter, how our insurance will react to this news and most importantly at this point how this will affect my daughter educationally. I obviously just learned of this change and will need to find out more about it to fully assess how it will affect us - but I wonder how many Aspies this board spoke to before making this decision. I've posted the full article found on NBC News. More to come on this subject. Remember - DIFFERENT IS BEAUTIFUL!

I'm back! We've entered a new phase - teenager! So much to cover, but for now I've provided links to two articles that I've recently come across that I think are fantastic. Please take a look. REMEMBER - Different is beautiful!

September 1, 2011 - A Female Perspective

I've posted an article titled "Diagnosis and All That Jazz...A Female Perspective on Autism." It's a great account of diagnosis and what that means from the perspective of a 20-year old recently diagnosed.

September 1, 2011 - Here We Go Again!

I haven't been writing recently, mostly because things have been pretty mellow - and you know how life has a way of running over the best layed plans. However, I have a feeling that things are about to get very noteworthy! My daughter is starting high school. I can't believe how fast the time has gone by since her diagnosis and how much things have changed. Although somethings, sadly, remain the same.

To catch up - my daughter successfully graduated from the 8th grade. It was all very traditional, except for the rhinestone spider headband that she wore. She wore a beautiful dress, and her look was all her - she curled her hair, which was blue at the time, wore a corsage - and looked all-around beautiful. She even attended the after ceremony celebration, which consisted of a dinner and dance aboard a river boat. Granted, by evening's end she was completely through with the experience. But she did it and she allowed herself to have the experience.

Following graduation, she left for a two-week vacation without me or her sisters, which I think was difficult, but rewarding at the same time. She was uncomfortable and had some tears, but worked through it and was glad that she went.

Now for school - we had our first Aspie moment of the school year (which hasn't even officially started) at the Freshman orientation. There's a new booster shot that's required of all 7-12th graders, and my daughter hasn't had it. She's extremely needle phobic - so when we stepped into the clinic set up at the school, things didn't exactly go well. I thought that if she could see other kids getting the shot, she would be more receptive to it. Not the case - she went a little ape shit - excuse my language. There was no way, short of restraining her that it was going to happen. The administrators gave her a waiver for the shot and we got her schedule - thank goodness! However, once we had her schedule, I realized that the school had put her in a special education class because of her IEP. This was Wednesday of last week. I called her couselor on Thursday and sent him a detailed email explaining that my daughter had never been in a special education class, and didn't need the class. In addition, she had no social studies or foreign language in her schedule. I didn't hear back from him, so called again the next day. The following Monday he emailed me to let me know that I needed to speak with the vice principal, so I started calling him immediately. I called him everyday and sent him emails until finally giving up and going into his office to speak with him in person today. I'm sure that he was a bit surprised to see me there - but I know how to play this game now and it's better for him to get to know me early on. He was kind enough to pull my daughter from the special ed class and put her in art instead - though he reminded me several times how difficult it was because of the size of the school and the limitations on teachers. Yeah, yeah - whatever!

So, here we go again - another school year, and another hurdle, otherwise known as a vice principal to jump. I'll keep you posted on our progress (whether that's forward or backward).

REMEMBER - Different is beautiful!

September 1, 2011

I've added a link to an article titled "Diagnosis and All That Jazz...A Female Perspective on Autism." It's a fabulous article from the first hand experiences of a twenty-year old recently diagnosed Aspie.

August 24, 2011 - Sacramento Bee Article

I've added a link to an article in the Sacramento Bee yesterday titled "Asperger's: Into Young Adulthood." Great article that will sound very familiar to a lot of you. I felt like I could have written it about my daughter. Enjoy and share.

Flower Girl

Another piece of work by my daughter - THE girl with Asperger's.

March 15, 2011 - The Contradiction

I've found that the longer I've dealt with Asperger's and the more I've assimilated to the quirks associated with our day to day lives, the less I have to say. I also think that I've hit a point where I feel like in some ways I've surrendered. There's still the daily stress in the morning, trying to get my daughter out of bed, the struggle to get her to do her school work, the constant battle over food - and I think "just screw it". Really, I mean just go through the movements, move from one spot to the next and repeat again the next day.

Then there's a spark of brilliance. My daughter tried out for and won a role in the play Romeo and Juliet. This is a very ambitious play for middle school, but she went to rehearsals daily, did all of her work and performed in four separate performances - in which she had four very long monologues. She will put herself out there - and she can excel. She's got the imagination of a great writer, poet or playwrite - we just can't seem to get her to a place where she can put it down in some form. Writing is generally out - the contradiction is that she writes in a journal almost compulsively. When I ask her to tell me a story, she'll begin talking and giving me the most amazing visuals - but when I put a recorder in front of her, she freezes.

I'm back to wondering what will become of this brilliant contradiction of a girl and when I'll figure out just how to condense all of her creativity and brilliance into a format that can benefit her.

The struggle continues.

Remember - DIFFERENT IS BEAUTIFUL!

January 3, 2011 - Your Little Professor

I've added a link to a website I recently found called Your Little Professor. It has great information about Asperger's in easy to read text. It also has links to some great articles and reports. The more you know, the better you can advocate.

Remember - DIFFERENT IS BEAUTIFUL!

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!!