Adoption Interview

Adoption Bloggers Interview Project 2012

Sunday, April 05, 2009

What We've Learned

For those of you who are new to the blog, I'm going to give you a brief rundown of our story, Hannah's story and then I'll go into my thought for the day about autism and link to another one of my favorite autism blogs.

Hannah is 2 1/2 years old. She has Asperger's Syndrome (on the autism spectrum) and Sensory Processing Disorder. Hannah is extremely high functioning and also very bright. She began reading at 2 years old and has a crazy vocabulary. People often have a hard time believing that she has autism unless they've spent a lot of time with her and know her very well in multiple situations. Though this is wonderful because it means that Hannah is high functioning and that she is coping relatively well with her challenges, it also leads people to be less tolerant when she is having challenges because instead of seeing a child with special needs who is struggling they see a child who appears to be older than she really is (drat that big vocabulary and the 95th percentile in height!) who is behaving unacceptably in their eyes. They see a child who is spoiled and who needs more discipline. They see a child who is rude. They see parents who allow this misbehavior to continue. They see parents who coddle their child.

This leads me to what Hannah's Asperger's and SPD has taught me. I've learned to be less judgemental and more tolerant of other children and parents. I've learned that there just might be more going on than appears on the surface. I've learned that maybe that parent or that child is doing the best they can and maybe they could really use an understanding smile and an offer of help. Every time I get that "look" in a restaurant or store I think about how I used to feel before I was a parent when I saw a child in the midst of what appeared to be a tantrum and I think about how I've come full circle. I won't lie and say that I don't occasionally get angry at the "giver of the look" for thinking anything other than wonderfulness about my daughter, but in general I just feel sorry for them because they have no idea, no idea what it's like to parent a child with challenges outside the norm of a typical child and ignorance is never a good thing. That's why it's important for us to raise awareness, but not awareness in the way that the media and several high profile organizations do using scare tactics and sensationalism. Not programs and articles warning parents of the evils of vaccinations or the blame and finger pointing, instead we need awareness of what it's really like to live with autism in all of it's forms, from the mild to the severe. We need awareness of how individuals with autism (and the people who love them) feel when they are ridiculed or discriminated against. We need awareness about the fact that many families cannot afford the therapies that would most benefit their child because many health insurance companies do not cover therapy for developmental delays. We need awareness to the fact that there is little support out there for adults with autism to lead productive and independent lives. We need awareness about the fact that those with autism are often excellent employees because of their attention to detail, respect for the rules, and intense loyalty and should be sought after for employment instead of shunned in the workplace. What we need is awareness that if the world was just a little more tolerant of all kinds of differences then we'd all be blessed beyond belief through the relationships we could form if we gave them just half a chance. Now, what you've all been waiting for, another one of my favorite blogs Diary of a Mom. If you want to hear some real inspiration check out this post and this one and this one that she wrote. She frequently brings me to tears with her eloquent tales of life with her two daughters, one on the spectrum and one not.

Now, moving on to the point of this blog, Hannah! Since the move (well always really, but especially since the move) Hannah has been having a difficult time with all the transitions that occur throughout the day. Simple things (to me anyway) like just getting out of bed and getting ready for the day, stopping an activity and sitting down to eat, getting ready to leave the house, and going to bed really throw her for a loop. Because these are all things that happen pretty much every single day, it's been a huge roadblock in our life. So, we've started using picture schedules to get her through some of the rougher spots in her day. The early intervention agency printed up and laminated for me some picture symbols (affectionately called PECS by those in the special needs world) that stand for the individual steps needed to complete the routine that is difficult for Hannah. I cut them out, put Velcro on the back of each square and attached the other piece of Velcro to a clipboard. Now as Hannah completes each step of the process she pulls off the task and starts on the next step. Though Hannah is able to remember and verbalize all the steps needed to get through each routine, she has trouble actually focusing and staying on task long enough to complete them without going into a meltdown. This schedule helps her visually track what she's done and what she still has left to complete before she's "free" to do her own thing. It lets her see that the end really is in sight if she can just stay on track. If she makes it through the entire schedule (for going to bed the tasks are PJs on, brush teeth, wash face, brush hair, go potty, get into bed) and is compliant with each step and no meltdowns then she earns a penny to put in her money bag. Once she gets 25 cents then she can use her money to ride the horse ride at Walmart. So far we are seeing more compliance and a greater sense of responsibility with the picture schedules. They aren't a miracle cure, but they do seem to be helping. Tomorrow we meet with the autism specialist, whom I've been calling the autism whisperer-a term I ripped off from Mama Mara another fabulous autism mom blogger, for the first time. I am cautiously optimistic that she will be able to give us some insights into Hannah's behaviours and some ideas on how to make her more successful as well as more at ease in social situations. The bad thing is that the meeting is at 11:00am, lunch time for Hannah. The whisperer is only at the center twice a month and every other available time slot was booked for the month. If we didn't take this appointment then we'd have to wait until May to have our first meeting and I really didn't want to wait that long, especially since we only have until July (when Hannah turns 3) to make use of her services. I want to be able to suck every last bit of knowledge out of her head that might be helpful for Hannah that I can while I have the time. Please keep your fingers crossed that I have success altering Hannah's eating schedule so that she will cooperate during the appointment.

Yesterday Hannah experienced what may just be her idea of the best day of her life. We started off the morning by going to the mall. She loves to people watch. She's all about people in theory. She loves to observe them from afar and even interact with highly approachable adults. It's just kids that she doesn't want to interact with. She got to get her feet measured at the shoe store and tried on practically every shoe in the store while we waited. She adores getting her feet measured and trying on shoes. I'm not sure what the appeal is, but hey, it's good cheap fun. Then we had lunch at the food court. She got to do some more people watching and even see a birthday party in progress. The food court at this particular mall has a full sized indoor carousel. Hannah had never been on a merry-go-round before, but desperately wanted to give it a try. We decided to let her have this special treat and she was in heaven. We haven't seen her look so relaxed since we moved. The constant up and down motion of the horse and the spin of the carousel was just what her body was craving. We ended up letting her ride it twice. After the mall we headed to the local zoo. It was a free day for city residents so even though it was cold and windy we decided to give it a try. Hannah is a definite animal lover so she had a blast at the zoo and we even got to watch two snow leopards fighting and see the elephants come when they were called by name by the keepers when it was time to close the zoo for the night. After the zoo we explored the park further and found that it had an amazing playground and ANOTHER indoor carousel. Our zoo pass got us a free ride on the carousel so Hannah got another turn on the merry-go-round as well as some much needed heavy work on the playground. After the playground we came home and had dinner then headed to the pool to try out her new arm band floaties. She was cautious at first about not having something or someone to hold onto in the pool, but soon grew to like the freedom it gave her to move around in the water unassisted. All in all she had a great day and ended up falling asleep before I even left the room. I truly believe it was her idea of a perfect day.


Anonymous said...

I know what you mean about judging others. I have learned to be much more tolerant since I became a mom. My son has SPD and I often get judgmental looks and comments, but they have no idea what we go through on a daily basis.

I can also relate on the whole transitions thing. Danny has gotten so much better with that, but since the birth of my third child, a couple of weeks ago, Danny has been having trouble in this area again. I should pull out the picture schedules. And, stick to a more consistent routine.

kia (good enough mama) said...

I too have become so much more tolerant and less judgmental when I see other "difficult" kids. Little Man isn't autistic but he's definitely "different." Like Hannah, I'm sure lots of people think he's just spoiled and coddled. Thankfully, there are more and more moms out there like you who really "get" it. Good job spreading the word! :)

a Tonggu Momma said...

I so felt this lesson our first few years parenting the Tongginator. I am MUCH more tolerant of others now, especially since the Tongginator is so high functioning. When the meltdowns do occur, she just plain looks like a brat. But she's not. Spirited? Yes! But not a brat.

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