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!!