Perfectly Quirky

Raising a Person with Autism

Month: May, 2013

Determining Eligibility for Services: When Kids with Autism are Cognitively on Target

Since S is under age 3, he is currently enrolled in our county’s Infants and Toddler’s Program, with an IFSP (Individual Family Service Plan). He was initially evaluated at 17 months and accepted into the program because he presented with a >25% delay in expressive speech. The IFSP is a family plan that involves teachers and other service providers coming into the home and helping not only the child, but also the family, learn to address the child’s delays. However, before S turns 3, he needs to be re-evaluated to determine if he is still eligible to receive services. If he still qualifies, we can remain on the IFSP for another year, or we can move him to an IEP (Individualized Education Plan). The IEP is a school-based service, where he would receive all of his intervention through the school. If eligible, Daddy J and I would be able to choose which way we want to go.

Here is where the kicker comes in… I am worried that he will no longer qualify for services. He just completed his evaluations and S has come so far, and made so many improvements, over the last 18 months that he is actually testing within his age range for speech, motor skills, cognitive abilities, etc. Now, this may sound fantastic, (and don’t get me wrong, I love the improvement) but don’t be fooled. Just because my kid can name his letters and count to 10, does not mean that he does not need services. Most of S’s delays are behavioral and social. He has trouble entering classrooms and transitioning from one activity to another. He does not repsond to his name. He does not know how to play with other kids.

He just completed all of his 3 year testing and I’ve received two of the 4 reports back. So far, S is testing within age range in speech and cognitive development. Luckily, all of his service providers feel that he would benefit best from further intervention- I mean, if you know S, that is pretty clear. I’ve read the two reports and I must say, that as a parent, they were painful to read. Because his test scores were so high, the providers were keen to focus their reports highlighting his areas of struggles. When you see it all in black and white… all of the things that your child struggles with… well, that is a very difficult read.

What is worse, is that I have been instructed to create my own ‘report’ of sorts, by making a bulleted list of all of the ways that S is not developing typically. Let me tell you, it sucks sitting down and making a list of things that aren’t ‘typical’ about your child. It weighs even heavier on the heart when that list is 3 pages… front and back.

So, now I guess we just wait. There are two more reports to be written and then his eligibility meeting is the first week of June. All I can do now is pray that even though he is not testing with a >25% delay, that he will be allowed to continue in the program.

While I am so grateful for all of the progress S has made in the last year, thanks to early intervention, he still has a long way to go. And, without further support and intervention, he is certain to backslide. So, fingers crossed everyone!!!


Nothing Without Preparation: Autism and Spontaneity Do Not Mix

It sure has been a while since I have written… I’ve put on a ridiculous amount of weight over the last six months, and I’ve been spending my mornings furiously trying to work it off (9 lbs down!!). So, I haven’t had much time to write. However, lots of big things are coming up within the next few weeks and months, and so I am taking this rest day to get caught up.

Just to give you an idea on what we are up against, within the next few months we will:

  1. Move
  2. Go on vacation to the Ocean
  3. Determine S’s eligibility for an IEP
  4. Start two sport activities with other children
  5. Have two new children start in his current class
  6. Celebrate S’s 3rd birthday
  7. Possibly switch all school and therapy programs or lose all services all together
  8. Possibly place S, alone, on a school bus to go to school.

That is quite the list for any family with typical children; for children who need a great deal of preparation just to walk in someone’s home, this is a massive list. This list sends my heart beating out of control. This list has sent me to the liquor store more than once. We are in a major prepping mode. We are preparing for battle.

I’ve started easy… preparing for our trip to the ocean. Heck, at least this change is fun and is something that I am looking forward to, sort of. For most families, prepping for this might involve telling your child that you plan to take a trip to the ocean, maybe reading a story about going to the beach and then simply packing your shit and heading out for a great time.

Well, it ain’t that kind of party at our house. I’ve been prepping for weeks.

I learned our lesson the last two years… S and the beach- namely sand- are NOT a good combo. The ocean is such a huge sensory experience- for anyone really. I think that is why so many people are drawn to the ocean. However, for kids on the spectrum, especially those with sensory issues, it can be a sensory nightmare.

So, I started with a mini sandbox in the back yard. It took over two hours, across two separate attempts, to get S to put his feet in the sand. This was a MAJOR breakthrough for someone with sensory issues with his feet. Had I just taken him to the beach, with its seemingly endless land of sand, there is NO way he would’ve adjusted. That’s what happened the last two years. He just shut down and then melted down. By taking it slow in our yard, with a small amount, on his time, we were able to get him comfortable with sand. (In fairness, I even prepped him for the sandbox- watching videos, talking about it and buying him special  ‘sand shoes’ (water shoes) before going to get our sandbox).

Yes folks, I had to prepare him to start preparing him. 

We then moved him to a big sandbox at the park. We went with a typical friend, so he could see how much fun it is with someone he knows and trusts. I had then planned to take him on a mini trip to one of the smaller beaches in the area, but they don’t open for another two weeks. So now, we are watching videos on YouTube. (I LOVE YouTube- its like moving social stories for everything in life.) We were able to find one of the beach we will be visiting- so he can see the actual boardwalk, ocean, landscape, etc. I even purchased, and set up, a beach tent in our living room so he could pretend being at the beach and be able to recognize something familiar when we finally get there.

He seems excited… so I hope he enjoys it… we spent WAY too much time in our room last year because it was just too much for him. With all of this preparation, I certainly hope for a few hours by the waves.

I have been preparing for this trip for a few weeks now (we don’t go until the end of the month) and I started preparing him for soccer this week as well (he starts that next month). And, with our great big list above, I have so many other things to prepare him for… much bigger things. Most kids just start soccer, or go on vacation… but not ASD kids. They need to know exactly what they are walking into at all times… and there is still no guarantee of success. Its overwhelming really, and something I hope he grows out of in time. But for now, we will watch videos of people we don’t know playing by the ocean.

And hopefully, if all of this hard work pays off, we will be able to make our own beach videos soon.