Joy's Autism Blog

I have a few links I wanted to share that I’ve been emailed about this week.

This first link is about a young man who has Aspergers Syndrome, Zach Henry. He talks about some of his challenges and his family talks about some of their challenges and how they were able find joy in his goals for his future. So here is the link to that short 5 minute video.

Next I have a link from a young man who has Aspergers/PDD-NOS, his name is Scott Lentine and if his story doesn’t encourage you and uplift you about your child with Aspergers/PDD-NOS, nothing will. He’s a graduate of Merrimack College magna cum laude with a Bachelor’s Degree in Religious Studies with a Biology minor.He is currently an
office intern at the Arc of Massachusetts in Waltham, where he tries to persuade lawmakers to pass key disability resources legislation to improve the lives of people with developmental disabilities. He’s a poet and a blogger so go check out his blog here!

Here is one of Scott’s poems for you to enjoy:

The Ode to the Autistic Man

Try to understand the challenges that I face

I would like to be accepted as a human in all places

Where I will end up in life I don’t know

But I hope to be successful wherever I go

I would like to expand my social skills in life

Making new friends would be very nice

Stand proud for the autistic man

For he will find a new fan

I hope to overcome the odds I face today

Increased acceptance will lead me to a brighter day

By the age of 20, I will have made tremendous strides

I know in the future, life will continue to be an interesting ride

I have made new friends by the year

I will be given tremendous respect by my family and peers

I hope to get noted for bringing the issue of autism to the common man

So that autistic people can be accepted in this great land

Stand proud for the autistic man

For he will find a new fan

I hope to overcome the odds I face today

Increased acceptance will lead me to a brighter day

And lastly I received an email from an autism podcast. I hadn’t heard of them before and I was excited to listen to them. The podcast is called All About Autism Podcast and you can listen here, the hosts are husband and wife and they are fun to listen to. You can also find them on twitter, so definitely check them out.

It appears that the comments are not working on my blog. Thanks to someone who sent me an email this morning I am going to get this looked into and will note it on a post when it is fixed. Meanwhile I can always be contacted at my email, facebook, or twitter and you can see that information on my contact me page

Sometimes the mail can make our break your day. Yesterday when I went to get the mail I saw a envelope from the clinic in Iowa City that did Sanura’s evaluation for an autism spectrum disorder way back in February. I had gotten reports from almost everyone who saw her but there was no final conclusion enclosed in the packets. The impression I got when we left that clinic in February was that there would not be a diagnosis for Sanura.

Sanura has always been a quirky sort of kid. She threw some tantrums at school that sounded like a possessed child and they lasted longer into her childhood then is socially acceptable. She’s never really had a best friend and she has had some issues with teasing-among other social/emotional issues.

When I opened the envelope I was surprised by their final report. Sanura was diagnosed with mild Aspergers syndrome. When we went in I was prepared for an Aspergers diagnosis because ever since Adrian was diagnosed and we learned more and more about the various autism spectrum disorders we spotted a lot of the characteristics in Sanura. When we left the clinic with no diagnosis I felt good about it. Now that apparently we do have a diagnosis I surprised myself by my reaction which was pretty much no reaction at all. Sanura is Sanura…she has always been who she is and I just love her. Quirks and all.

When we decided to homeschool our girls we didn’t really talk to anyone about it. It’s kind of a controversial thing to do and I was nervous about my ability to do it successfully. I highly, very very highly, value a great education. It’s extremely important to me that my children live up to their very best potential when it comes to education. As I watched Sanura go grade by grade through elementary school I saw her self doubt increase, her self esteem decrease, and her need to please her peers starting to emerge. Pleasing her peers is not something I wanted Sanura to be concerned with. The best thing we could think of to do was to pull her out, homeschool, and try to build up her self esteem the best we could so she doesn’t start searching for acceptance in the wrong places.

So far it’s been a really good experience and I’m happy with the route we’ve taken.

Meanwhile, it’s hard to think that 50% of my kids have an autism spectrum disorder. Who knows about Lincoln, truthfully his development reminds me a lot of Sanura’s. Either way, one day at a time, we’ll figure it out and just keep lovin’ them.

We have our IEP meeting on January 24th. I am excited to see what everyone has to say. This meeting is a month early because of Adrian’s great progress!

Sanura is going to a clinic for development and disabilities on February 25th to look at possible Asperger’s Syndrome or ADHD possibly. I am looking forward to seeing what they say too, and probably more nervous about that meeting.

If you could keep our family in your prayers for the next couple of months about these very important meetings we would sure appreciate it. Prayers for both good outcomes and emotional peace because I get a little crazy during these things.

Everything is great around here, I’m feeling good and just enjoying being home with my children and taking care of my husband and house. I love it. So not too much of an update but I had to mention our meetings since I got to talk to the teacher yesterday.

Oh she did tell me one thing. That Adrian has been saying at school: “No more Santa Claus. Santa Claus is all done” I never told him that, he must have just thought of that one on his own.

I’ve found that since I started working I talk to my co-workers a lot about autism. I just can’t seem to help myself. When we’re slow and we’re chatting somehow I bring it back to autism. I was worried it was going to be annoying but the lady I was talking to said she didn’t mind and that she really didn’t know much about it. It’s crazy to think that the public’s biggest reference to autism seems to be the movie “Rainman” of all things. When 1 in 70 boys have autism we need to be talking about this. We need to be spreading awareness of what autism really is.

She asked me why there seem to be so many people that have it now when it used to be unheard of. I wasn’t sure how to answer that because I think nobody really knows the answer to that question. Some people will say that it is just recognized more now and people with higher functioning autism are getting the diagnosis of autism, and “back in the day” those kids would just have been considered quirky or weird or whatever. While I think that accounts for some of the increase in autism I do not believe it accounts for the huge rise in autism we are seeing today. I believe there is some environmental factor that is leading to more cases of autism. Adrian would have had an autism diagnosis whether he was around today or whether he was born in 1980 because his autism is very obvious. Now Sanura is quirky and having her social issues and in my estimation she will have an Asperger’s diagnosis where she probably wouldn’t have had that years ago.

I have a video of Adrian stimming that I’m planning on sharing here on the blog soon. I think it’s important for people to know what that looks like and I know some people will find it interesting. It’s something that might be a little hard for me to post because I know there are some sick people out there who may laugh at him or something but for the sake of awareness my husband and I decided we’d like to share it so stay tuned for that some time in the near future.

I hope I’m not the only one who turns into a blubbering mess when someone with autism is depicted on a television show or movie.

I have occasionally caught the show Parenthood where “Max” has Asperger’s Syndrome. I remember the episodes toward the beginning of the series focusing on the process of getting a diagnosis and I would just sit there and bawl my eyes out. I didn’t get to see the one where he knocks the guy out in the grocery store for calling Max a “retard” but I saw the commercials and it made me smile.

The other day I watched the movie “Dear John” and there is a young boy with autism but featured more is the character John’s dad who is very peculiar, obsessed with coins, doesn’t look people in the eye, always makes me meatloaf every Sunday. I don’t want to give away the movie in case you want to catch it on Netflix or something, it’s on instant watch but it had me in tears too.

I’m kind of sappy anyway and cry at some pretty silly stuff but the movies that feature people with special needs really tear me up.

Sometimes the shows kind of annoy me, that these are generally actors pretending to have disabilities but I guess anything that tries to bring more understanding is probably a good thing.

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There is going to be a new show coming out about families with Aspergers Syndrome and other autism spectrum disorders, here is the information from the production company:

Award-winning production company, Pie Town Productions, is currently developing a series that would follow one family through the everyday challenges of raising multiple children on the autism spectrum and/or with Asperger’s. We think this could be an amazing opportunity to shed light on the misconceptions surrounding an individual’s ability to live a fulfilling life with this disorder(s). To see additional info about Pie Town, please visit www.pietown.tv Interested in participating in the show or finding out more? Please email us at: ally_weinberg@pietown.tv

Just passing along the word, sounds like a show I would watch.

I took Sanura to her appointment yesterday morning. I told the doctor the situation and we got a referral to the University Hospital. That’s where we went to get Adrian’s diagnosis and for a couple follow up appointments for him. Sanura really needs a full evaluation, the play therapist from a couple years ago was just not enough and the doctor agreed with me about that. They are supposed to call me with the time for the appointment, I hope it doesn’t take forever to get in. I’m hoping we can deal with most of this before Christmas-as far as diagnosis goes.

Tonight was a family game night at Nevaeh’s school. I wanted to take all the kids to this game night as a fun thing for them to do. Glen wasn’t able to come because of his work schedule but I wanted to try to do it anyway. So I loaded up all four kids and my plan was to keep Lincoln in the stroller while I helped the other kids with the games, I knew Adrian would need help with any games. So when we got to the school I opened the trunk and uhh…no stroller. I realized when we went trick or treating I forgot Lincoln’s stroller at my mom’s house. I debated just forgetting it because I knew Lincoln was going to be really hard to handle and not to mention he would get heavy to carry around. I decided to just go for it, I didn’t want to disappoint the kids.

So we went in Nevaeh’s classroom and there were a bunch of four year olds in a circle around the teacher playing a game. Nevaeh ran over and joined the circle. Adrian sat on the carpet directly in front of me and Sanura sat on the outskirts of the rug. I figured, ok she doesn’t want to play…maybe she’s just too old for this and that was fine.

Then I looked and noticed during the game the teacher was telling the players to cover their eyes and Sanura was covering her eyes. So the four year olds know that they need to sit in the circle to play the game but Sanura didn’t. Hello proof for the doctors at her evaluations on top of the other mountain of evidence I have. So I was thinking what do I do? Do I call her over and whisper to her to join the circle? I didn’t want to call attention to it and embarrass her so I just said nothing.

So Adrian just sat there and moaned and rocked the whole time and I could feel eyes burning a hole through me and him while I stood there.

It was a horrible horrible night. I cried when I got home and took out my frustrations on everyone by being angry about everything and yelling at people. Wow, what a night. Today was just a bad day all around.

I don’t want to share this to whine but sometimes you just need to get out these things and I know that people who are dealing with autism in their family truly appreciate these stories. Like I told Glen tonight, sometimes I just need his sympathy because sometimes it feels like nobody understands. So if you’re going through something with your precious child/children with autism or other special needs tonight…I understand, I sympathize, and I’m praying for you.

I had both Sanura and Adrian’s conference this morning. They went mostly as expected. I’m just going to share about Sanura’s today or this will be super long.

Sanura is doing good academically. This comes as no surprise to me. Sanura has pretty much always done really well with math, reading, speaking, and she loves science.

As usual she’s having trouble socially, not making friends and doing odd things in the classroom and on the playground.

I absolutely know that Sanura has Aspergers Syndrome.

Lately Sanura has been infatuated with cats. She talks about them constantly. Now I know kids will get “in to” different things and talk about them a lot but this is a whole nother’ level. You can’t have even a short conversation with her without her mentioning cats. I noticed when we went to my moms house someone asked her a question and she “meowed” in response and this is not the only occasion of that. I was told by her teacher that she is hissing and meowing a lot at the other kids.

During class she will put her feet up on the chair and kind of “sit” in a squatting position on her chair. Well apparently she has started squatting like that and rocking back and forth.

She bursts out in laughter for no known reasons and she talks to herself a lot.

There is more to this story even beyond this but for her privacy I won’t say anymore. I am gathering “evidence” from the school about her behaviors to present to the doctor. The last time I tried to get her evaluated for Aspergers Syndrome was back when she was in first grade, she’s in fourth grade now. The therapist said Sanura had “social anxiety”…this is beyond that and I will not take that for an answer this time and we will not be going back to the same therapist.

Sanura needs some help, I’m not sure what more I can do to help her but I will get her the help she needs. The differences between her and her peers are growing more and more obvious. It’s scary and I worry about her.

As parents, all we care about is Sanura’s happiness. I want her to feel good about herself and I think her confidence is just lacking because of rejection by her peers because she’s quirky.

Here’s my beauties at Sanura’s 10th birthday party last month: