The Role of the Parents

One of the very first things I encountered when I started reading into the world of autism is the role of parents.  A very famous autistic, Temple Grandin, is an accomplished author, professor, researcher, designer, and advocate.  However, even a glimpse at her story reveals how incredibly influential her mother was.  One of the first books I read was “The Spark” by Kristine Barnett.  It is the story of a mom who gave her autistic son an incredible gift, helped him to conquer elementary school and now is supporting him through his university career while he is still negotiating childhood.  He moved from college to university at age 10.  Then I read “Autism Breakthrough” by Raun K. Kaufman.  It is another incredible book, and he shares his story of autism and how his parents and their innovative ideas and dedication have helped him so much that he no longer identifies as being autistic at all.  Now that idea may be controversial, but what did become overwhelmingly clear to me was that there is a common link in these stories, and it is the parents.

As I learn more about Jake, and who he is, how he works, and what he needs, it is easy to become overwhelmed.  I truly believe that he needs socialization and that the structure at school has been the most incredible gift.  He is doing so, so well.  And yet, I see the biggest leaps in his social connections, his development, and his social skills during the holidays.  This has always been the case.  I can remember as far back as when he was two years old, he would come back from a short trip to visit my sisters family with so many new skills.  I always thought that he was learning from his cousins.  I am sure he was, but now I also think he was learning from me and my husband.  You see, when we travel, we are ‘on holiday’ and we spend considerably more time playing, reading, connecting with Jake, and considerably less time at work, doing chores, marking, planning, and doing adult activities.

Now I can see clearly that the more time he and I spend connected, doing what he wants to do, the better he does.  Jake is more relaxed when we have time to spend together.  He is less bombarded by all of the things that drive him crazy.  He feels safer, calmer, and is able to learn more.  It doesn’t work in small doses.  I can’t just pick him up from school and play Lego for thirty minutes and think that we will automatically have a smoother bedtime, although it probably wouldn’t hurt.  It usually takes him about 24 hours to relax.  That is why the ‘on holiday’ times always are so influential.

I can see this in my relationship with my husband too.  We can count on having some sort of nasty fight every school break.  Sometimes even on a long weekend.  It’s hard to connect when we have so much time together all of a sudden.  But afterwards, we are more in tune and able to relax and have a wonderful time if we have that time to plug in to the relationship.  Jake needs time to blow off steam, have meltdowns, cry, push, hit, sleep, and then he can relax and be connected with me.

It is making me very excited about summer holidays.  This will be the first year I have known about his autism and all the things that make life hard for him.  I can’t wait to connect with him and help him have even more fun this summer than usual.  Fun that he finds fun.  Time spent drawing complicated charts, mapping out the baseball season, whatever he wants.  Because I know now that those are the things that calm him, that connect him to himself and us, those things that make him happy, make him so happy.  I just want to do more of them.

Last summer we did get into somewhat of a routine, but this summer we will have visual schedules.  Last summer I made sure that we were at the beach in the morning and home in the A/C in the afternoon because I was pregnant.  This summer I will be able to watch to see what times, temperatures, levels of light, Jake and Aiden enjoy the most.  Last summer I was as patient as I could be, this summer I will be more patient.  I just enjoy making my kids happy.  Not spoiling them, indulging them, just encouraging their joy and being a part of it. It’s so intimidating to think that I am the autism mom, the one that is going to have a gigantic impact on Jake and what he thinks of himself, what he eventually can do or not do, what he can cope with and what he just can’t.  But when I make these little mental breakthroughs, like, “Hey, when he’s happier, I’m happier!“ it just makes me feel so blessed and excited to be his mama.


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