(This is taken from a website I’ve just joined, myautismteam.com. I processed so much while answering these questions, that I had to post it here.)
Q: Tell us your autism story.
While completing my degree, then-three-year-old Jonathan and one-year-old Hannah went to the university preschool. That was when we first heard that Jonathan might be autistic. His teacher had a specialist evaluate him (IN the room with 30 other kids running around). Needless to say, he didn’t do well on that test, and the specialist (who was quite insensitive to us) said he was likely autistic. We got a second opinion at a smaller preschool, where they evaluated him in a quiet room with just the teachers. He did much better then, and was labeled developmentally delayed with some social and speech issues (mainly lack of eye-contact and echolailia – repeating/parroting words/sounds, and non-conversational language).
We immediately enrolled in an early intervention program that we attended twice a week with him. He made great strides and by the time he was 5, was bright, energetic, and loved learning. He has an amazing ability to hear something once and be able to remember it. We moved to a new state and I homeschooled him. It was a fun year, teaching him how to read, exploring his favorite subjects (marine biology, history, space), and spending lots of time with him. I did have a hard time with his handwriting…no matter how much we worked on it, it seemed like every day I would have to re-teach him how to write letters. I suspected then that he might be dyslexic, because he was constantly flipping letters.
For kindergarten/pre-first, we enrolled him in a Montessori school. He loves school and his teachers, but his teachers again noticed things that were “off” about Jonathan. He was brilliant, but had no patience. He made lots of friends, but didn’t know how to talk with them. He talked AT everyone, had a hard time sitting still and listening, and had an incredibly short fuse. He was easily frustrated and would get angry very quickly. We noticed a lot of the behavioral stuff at home. He would go from being in a great mood to throwing toys across the room and growling. He would be sitting, playing quietly to suddenly yelling and screaming at apparently nothing. We discussed these concerns with his teacher in his first evaluation (Fall 2011), and she asked our permission to have him tested. We finally had a meeting in April of 2012 with the school’s special education resource person, a child psychologist, speech therapist, occupational therapist, his teacher, and the principal. They were WONDERFUL! Each had done a detailed evaluation of Jonathan and they all seemed to really GET our boy. Through their in-depth testing and discussing all the results, we agreed with their diagnosis that Jonathan has Asperger’s syndrome or high-functioning autism.
We are now in the process of researching therapies, diets, medications, etc. to help Jonathan succeed as he goes into first grade. I also strongly suspect that our two-year-old son, Joshua, is also on the autism spectrum, perhaps even to a greater extent than Jonathan.
Q: Most days I find myself…
A:Waking up to make coffee and lunch for my husband, trying to have a few minutes of quiet time reading or Facebooking before the kids get up for their breakfast. I work from home as an editor, so once the breakfast chaos is over, I bounce back and forth between settling the kids with snacks or activities and getting work done. I try not to let the TV babysit, but it’s especially hard during the summer when it’s too hot for the kids to play outside!
Q:When did you know your child was on the Spectrum?
A:This year, when Jonathan was 6. We didn’t agree with the initial evaluation when he was three, but that was mostly because the way it was presented to us was harsh and totally out of the blue…basically the specialist said that we must not have been paying any attention to our son because he was clearly autistic. We just couldn’t accept that, since he seemed totally fine to us. However, the second evaluation (at age 6) was much more thorough, we were included in every test and the results were very clearly explained to us before the diagnosis was determined.
Q:What therapies (if any) work best for your child?
A:Jonathan definitely has sensory processing issues (sound, mainly), so we try to give him a varied “sensory diet.” He especially responds to deep pressure. When he starts freaking out and getting overwhelmed, we will lay him down on the couch, cover him with the couch cushions (except his face, of course), and lay over him. It sounds crazy, but the “couch sandwich” settles him down SO quickly (it also works with our 2-year-old). We have also noticed that he does much better with a protein-packed breakfast. Days that start with cheesy eggs and sausage go MUCH better than milk-and-cereal days.
Q: What do you wish you knew then, that you know now?
A:Autism is NOT a big, scary word like cancer. You don’t die from it. It’s just a different word that helps describe my child.
Jonathan has blue eyes.
Jonathan has curly hair.
Jonathan is tall.
Jonathan is autistic.
Also, I wish I was more confident in myself as a parent instead of instantly blaming myself. Jonathan’s autism isn’t my fault. It isn’t because of something I did or didn’t do.
Q: What are your biggest challenges or difficulties?
A:We are still working on Jonathan’s intense mood-swings. We are looking into finding a therapist or child psychologist to help him and us come up with better strategies for keeping him from going off so often. In school, he has several goals with respect to handwriting, sitting still, finishing tasks, etc. We are also trying to make our life more predictable, since surprises or changes in schedule are really tough for ALL the kids in our family.
Q: What would you share with parents new to autism?
A:When we walked out of the meeting where Jonathan was officially labeled as autistic, I remember this odd sense of newness, heaviness, strangeness. It wasn’t until we walked into Jonathan’s classroom and he ran up to my husband and me and hugged us that I had a mini-revelation: he’s the same boy. We didn’t get a new kid in our lives, we got a new word. It’s a word with a lot of weight, sure, but our son hadn’t changed one single bit. We had. And we continue to. It’s OK to grieve a little bit, to feel a little bad. We gave ourselves the weekend to mull over the newness of autism in our lives. After that, it was back to normal. Our focus now is how we can help Jonathan.
The autism label has helped us understand some of Jonathan’s behaviors. Things that we used to think were discipline issues (chewing on his shirts, making annoying repetitious sounds/movements), we have realized are clues that he needs sensory stimulation and it’s time for him to go spin, jump, lay down for the couch sandwich, or eat. Autism has given us a different lens to view our son through. It’s not a scary thing, it’s just new. But the great thing is, there are SO many other people who have pioneered the way. Parents new to autism NOW don’t have to go blazing trails, we just have to start looking around and asking for directions.