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Thursday, July 7, 2011

10 Things -By Tanya Savko

I am so honored and proud to announce my very first guest post by one of my favorite autism mamas --Tanya Savko, is the author of TeenAutism.com where she brilliantly wrote about her journey with her son Nigel throughout his early teen years.  Although the site is now static, meaning she no longer adds to it, the information held there is well worth it's weight in gold.  It is a resource I often refer to when I have questions about my own boys.  Her current writing can be found at TanyaSavko.com  Trust me when I tell you that her writing is poignant, insightful and so helpful for those of us on the journey of raising children and especially teens on the spectrum. You will fall in love with both blogs, as I have.  I've told Tanya, "I want to be just like you when I grow up."  The love of her children shines through in her writing, even when they are exasperating. Those of you who follow my writing probably thing I want to hang my children in a closet and leave them there. Please go visit both of her sights. Here you go:

You’ve already braced yourself. You know there’s no way this will be easy. But what comes next? As your son or daughter on the autism spectrum enters his or her teen years, what should you expect? What should you be aware of? All of these things ran through my mind as my son, who is going to start his junior year of high school soon, entered teenhood almost four years ago. And although I was right about it not being easy, we’re getting through it, learning as we go. Actually, several things have come up over the years that I hadn’t thought of on my way in (including some positive points)! These, in addition to some things I had already considered (as you, no doubt, have as well), make up my list:

10 Things for Parents of ASD Kids to Keep in Mind about the Teen Years

1) Sensory issues (such as sound sensitivity) continue to abate, and it gets easier to stay longer in restaurants and stores and other public places that were previously disastrous. Can I get a Halleluiah?

2) Dealing with the hormones of puberty is really hard for ASD kids who had more severe sensory issues when they were younger. As they got older, they learned to filter the sounds, etc. that previously bombarded their bodies. Now, hormones are bombarding their bodies, and, as with past sensory issues, it will take several years for them to learn to “filter” the hormones. (I also have a teenage son who does not have ASD, and puberty has been infinitely easier with that one.)

3) In addition to difficulty dealing with hormones, our ASD kids are still susceptible to other changes affecting their moods: time changes, seasonal changes, and schedule changes (especially when school is out), anxiety, behavioral issues, and OCD symptoms. A low dosage of medication can help immensely, and you can have them on it just for a limited time until they learn to self-regulate better.

4) As if they didn’t already have enough affecting their moods, the possibility of developing seizure activity is also something that can affect mood and behavior. The unfortunate fact is that 25% of people with autism will develop epilepsy, compared to less than 1% of the general population! Also, most sleep-deprived EEGs are only half an hour long and not always reliable. A 24-hour ambulatory EEG (ambulatory means you can be at home with a small piece of equipment) produces much more data to evaluate, so you get a more accurate picture of what’s going on. 

5) Good news – language and social skills can and do improve, especially if your child continues to receive therapy. And don’t give up, because even if you’ve reminded your child to say “thank you” a bajillion times, their first unprompted thank you might come at the age of 15, as my son’s did.

6) This next one’s a big deal for some of us, and I didn’t even know the terminology until two and a half years ago – executive function deficits. My son has severe problems with executive function – the ability to plan and organize school projects, work independently, etc. Not every ASD kid has this problem, but many do. If yours does, check this out: I’m giving away a copy of Late, Lost, and Unprepared: A Parents’ Guide to Helping Children with Executive Functioning. Simply come over to my current blog, www.tanyasavko.com, and leave a comment that you are interested in the book. On July 15 I’ll draw a name and email the winner for their address. It’s never too early to start helping kids with executive function issues, and I wish I had started sooner!

7) Along with executive function problems and emotional delay comes the possibility that your child might need a modified diploma. Remind yourself that this is not a reflection of your child’s level of intelligence or ability to comprehend what is being taught, nor is it an indication of laziness (as perceived by some). It may just be too overwhelming for your child to handle the workload of a high school student if he or she is emotionally ten or eleven years old.

8) Despite emotional delays and possible problems handling the school workload, your child’s need to assert some independence will increase. This is good news! It doesn’t mean that they’ll be able to drive any time soon (although some ASD teens do), but they might be ready to ride their bikes unaccompanied, and this, while scary, is still wonderful and amazing. 

9)No matter what, even if your child develops epilepsy in his or her teens (as mine did), even if you come to decide, despite Herculean efforts, that he or she will need a modified diploma (as mine does), things will get better. Ten – or even just five – years from now, your child will not be the same. In a good way. Read "If I Blogged 10 Years Ago" to see what I mean.

10) Remember that everyone is different. “If you’ve met one person with autism, you’ve met one person with autism.” My son’s experiences in the teen years will not necessarily be your child’s. His challenges may not be yours, nor his abilities. But the topics listed here are the main things that, as a parent, I wish I had known about going in. And I hope that knowing about them is helpful to you. 

I wish you all the best on your journey.

Tanya