Shayan’s Law
January 11, 2009
I am the District 37 advocacy lead for Shayan’s Law so I thought I should comment on this since the bill is being filed this week in Washington. Obviously, I am fully supportive. This is autism insurance parity we are talking about. And, it is much needed! We were able to get my son’s “evaluation” covered by insurance. But the craziness we had to go through to get it covered was ridiculous. It’s almost like the powers that be (employers and insurance compannies) are creating barriers for kids to get evaluated - I mean, if they get evaluated, they might walk away with a diagnosis that the insurance company would then have to pay for!
Fortunately (or not) I used to work in the health insurance business so I know how to navigate its murky waters. However, nothing else with regard to my son’s treatment for his aspergers has been covered by our insurance. He was diagnosed at the end of August 2007. Since then (about 17 months later), our $100,000 of savings is almost wiped out. We were fortunate to have the savings. I know - you aren’t supposed to talk about money in public. Well, if we don’t talk about the money, the general public will not know what families like ours are going through. $50,000 a year people!
Think of the majority of families out there that cannot afford this. Many families have second and third mortgages on their homes in order to cover their children’s autism treatment. This is shameful. These are young children who need medical treatment and are being denied due to discrimination by insurance companies and employers who control benefits.
If you want to see this changed, call your Washington State representatives and senators from your district NOW. You can learn more at http://www.washingtonautismadvocacy.org/
Rejection
January 10, 2009
I was talking with a very disappointed mom yesterday (one of many discussions I’ve had with moms of kids with autism or aspergers). There are many difficulties with autism, as a mother. But, one of them in particular is the constant rejection. As I was having this conversation, I came up with a list of them - I’m sure there will be many more. Afterall, my son is only six! I know parents of older children could add a hundred more items to this list. But, I do have to say that this list gives me and others a glimpse as to why those of us mothers with children with autism shed so many tears….
Rejection from your friends when your child is too much to handle and so you aren’t invited out anymore
Rejection from other patrons in a restaurant when they give you dirty looks because your child is being loud (or simply decides to blow out everyone’s table candles!)
Rejection from teachers who think you are a bad mom
Rejection from doctors who decide they don’t know enough to be helpful (and they are usually right)
Rejection from science camp because your child freaked out when they turned out all the lights to look at the stars
Rejection from your child’s friends because your child hit them (or simply acts differently)
Rejection from your child’s friends parents because your child hit them (or simply acts differently)
Rejection from your insurance company because your child has autism
Rejection from schools because your child has autism
Rejection from your church because the school rejected your child because your child has autism
Rejection from your church because your child cannot sit through mass quietly
Rejection from your spouse because they can’t handle the stress, craziness, etc. (although this is not the case in my situation - but the statistics do show that 80% of marriages end in divorce where there is a child with autism)
Rejection from your parents or your parents-in-law because they think you are a bad parent (or because they simply want to remain in denial about their grandchild - afterall, grandchildren are supposed to be perfect)
One Step Forward…
January 9, 2009
Today I was very disappointed. Nothing to do with my son. But with the whole system. I’ll be able to elaborate more in a future post. But, it just goes to show that with autism, aspergers, and I suspect anyone who is different in any way, you feel like you take one step forward and then you get knocked back a few steps. I am constantly trying to remind myself that there will be really good days and there will be really bad days.
Bullying
January 8, 2009
Former bullied student sues Tukwila School District An autistic young man and his parents have sued the Tukwila School District, claiming management failed to act against unrelenting bullying.
* Read the full article at:
http://seattlepi.nwsource.com/local/395003_tukwila07.html
I can’t tell you how many parents I have met in the past year that have told me their ASD child has post traumatic stress disorder. I had never heard of such a thing - kids are being diagnosed with PTSD because of the bullying in schools? That’s unbelievable. I know you can’t rely on the schools to do everything - but certainly someone in the school must know when a child is being bullied this badly - and certainly we can expect our schools to keep our children safe.
I guess I’m really tired of the lowering of expectations of our schools. The reason I chose to send my children to Catholic school is because I know they really care. And, there is a whole community surrounding the school that cares and that will make sure the school cares too. I grew up in Catholic schools and I have always been grateful for this.
Big Hugs and Seattle Public Schools
January 7, 2009
When we walked into the school building this morning, my son tossed me his jacket and backpack and told me to go hang them up while he ran into the classroom to give his IA a big hug. She was now back from the east coast from the long break and he hadn’t seen her in 3 weeks. He gives great hugs!
I sat next to a Seattle public school board member today at lunch. He probably wished he had sat at another table. I asked him too many questions. No, he was actually very generous in talking with me. Well, he is afterall an elected official involved with some very controversial school closure decisions right now. So I imagine he is used to it. He explained the necessity of the school closures - which I agree with the financials of it all - not an easy move but I get the economics. He understood that the special education programs were “terrible” based on some studies they have done recently (which I am aware of and there is a lot of info on). He also said their special education programs were about 20 years behind where others are nationally. They are trying to recruit a top-notch special education expert nationally but are having trouble attracting someone. I noted to him that, in the mean time, families like ours are paying $50,000 a year to educate our children - and we’re the lucky ones. The families that cannot afford it or cannot find a school to work with them are in a very difficult, and often hopeless, situation. And, time is of the essence with these kids. We do not have time to wait for the public school district to get their house in order. Every day, month, year(s) that go by are years lost for all of our children who need the services. Early intervention is absolutely critical!!! My son and his ability to successfully get through the past two school days without his IA is proof that high quality, early intervention works. I understand the school board has a mountain to move here. But I say instead of taking a hammer to it they need to take a wrecking ball to it and finally do the right thing (and legal thing) for our kids.
Schools for Spectrum isn’t going to wait around…
Another Great Day!
January 6, 2009
It is so amazing that my son had another terrific day at school without his IA. I don’t even know what to say about it. He apparently chose to stay in for one of the recesses to help vaccum the classroom. He has always enjoyed that. He tells me he also reorganized the teachers electrical cords. He had fun!
Proud Mamma
January 5, 2009
I could not be more proud of my son (and my daughter too). He was so emotionally distraught about going to school this morning - we experienced every tactic from crying (not the whining kind but the truly sad sobbing) to defiance (”I am not putting my uniform on because I am not going to school today!”) to deal-making (”if the teacher promises it will be an easy day then I’ll stay, but otherwise I’m going home”). It is quite an adventure for 7 in the morning, especially since we had more snow overnight! Well, I left him at school a very sad and nervous boy. When I picked him up after school, he had that smile on his face that I knew he was extremely proud of himself. The teacher said he did so well. He even responded to her instructions and did what he was asked to do - without his IA there! That’s amazing. On the way home from school he had to call Daddy to tell him what a good day he had. And he said to me “I had such a good day today, I can go back to school tomorrow, yay!” I don’t know what happened at school today. But, that was a complete transformation. And, I am so glad. I had a sick stomach all day at work today worrying about him. You just never know - it seems like every day is a mystery waiting to be solved. I’ve never particularly liked the autism puzzle piece as a symbol - I don’t think of my son as having a missing puzzle piece. But, certainly, every day is unpredictable with him! Thank you so much to his wonderful teacher! P.S. He informed the teacher that it was not a good idea to have two power strips attached to the outlet!
Back to School
January 4, 2009
Good luck to everyone getting their ASD kids to make the transition back to school smoothly. I’ve set up a bowling get-together today for some of my kids’ friends, hoping they will be excited to see some of their classmates and will enjoy going back to school tomorrow.
My son’s school has a learning resource center which has been very helpful to him as he’s learned how to read, among other things. I mentioned in an earlier post that my son’s IA is snowed in on the east coast and will miss the first couple of days back to school - the most difficult days! The teacher in the learning resource center is going to help my son transition in the morning by meeting us at drop-off. I’m so fortunate to have such a supportive school.
Let’s hope for a good day tomorrow!
Jett Travolta
January 3, 2009
may he rest in peace…
Interesting that the passing of Jett Travolta brings up much question about whether he had autism. Certainly us parents of kids with autism know that he had the “autism eyes”. That look that he’s both in our world and in his own world too at the same time.
Whether Jett Travolta had autism or not, I pray that his family finds peace. There is nothing worse than losing a child. And I hope the autism community can come together to support this family and not criticize them. No parent, no matter who you are, has an obligation to speak about their child in public or to be advocates for a particular cause.
Anxiety
January 3, 2009
It amazes me how much anxiety Aspergers can have on a parent. My son’s instructional assistant just emailed to let us know she is stuck on the east coast, trying to get a flight back and may not be back until Tue night. So she would miss the first two days back at school. Suddenly my anxiety level went from 1 to 10 just like that. The first day back at school after a very long break is not an easy day. Even though I have confidence in the school and teacher and I know they will do a great job with him, I worry about what he might be feeling emotionally. I know deep inside he deals with a lot of anxiety himself that he is not able to express verbally. We see it behaviorally. The last time his IA wasn’t in school with him, he started complaining about stomach pains. Well, we will enjoy the last couple of days of winter vacation (he is excited to go to the Apple store today and bowling with friends tomorrow) and hope for the best on Monday! Wish us luck!
