I swore I would never do this....I am not a writer by nature, I usually leave that to my mom and sister. But this year has been so overwhelming, and much of it has been impossible for me to share. When things do not turn out how you expected it's difficult to explain over and over again, and no matter how supportive those around you try to be, there are just no adequate words. A dear friend of mine opened my eyes to the fact that I have been closing myself off from former friends and social circles since my boys have been diagnosed with ASD. I guess this is my new attempt at keeping people updated while only having to say it once.....Please be kind, I am new at this :)
Last February, my older son Jack was diagnosed with Aspergers syndrome. While this was a huge blow to our family, Jack is a brilliant, funny and talented little boy, and we knew that he would likely function well in life with a little extra help. He has been getting this help in the form of occupational therapy, special education, dietary changes and supplements. We have had the new experience of visiting developmental pediatricians, and attending IEP meetings. But for me, this diagnosis was no shock and was something I suspected almost from the time Jack was an infant. He has always been obsessive, and I am not talking "my kid is obsessed with airplanes", I am talking my kid is OBSESSED with airplanes. One in each hand at ALL times, never deviating and never hesitating to lose his shit the minute one of these said airplanes hits the ground. Well, actually first it was stars, then it was grass (yes grass), and then it was airplanes. Other signs: the boy NEVER slept, his gross and fine motor development were slow and he could talk a blue streak from the age of 16 mos on. He could identify trapezoids, ovals, octagons at age 18 mos and pronounce them. The first thing that really troubled me occurred right after my second son Nathan was born. We were driving in the car, and as I pulled up to an intersection and turned on my turn signal, Jack began to scream hysterically, begging me to turn it off. This continued for months, every time I needed to make a turn. It progressed to other noises as well, such as the radio in the house, which we still cannot turn on unless we start it at a volume level of one and slowly increase over a period of about 15 minutes to an audible level. That is how we were able to listen to Christmas carols this year. :) The area of focus has progressed to robots, killer whales, hermit crabs, blue crabs.....but it is always there. I am awakened each morning with "mommy have you ever seen a killer whale" (seriously, every day) or "beep, beep beep" at an insane volume, which is his robot alarm. These things aside, this little boy is charming and hilarious. He is all of his therapists' favorite and with one squint of his eyes he can melt my heart. Even if in the next breath he tells the family dog that he is going to die.....this is Jack's world and day by day we are learning to live in it while gently attempting to pull him further into ours.
Nathan is our two year old. Last week he was diagnosed with autism. Rewind to last February when Jack was under evaluation. I was asked repeatedly if I had any concerns about Nathan. My answer was always the same....no, no, no! He had great eye contact, was always content, was babbling all the time and attempting new words like dog, Jack, etc on a daily basis. I was relieved to report that Natey seemed to be developing normally. He slept well, he was the easy-going baby. Then it all started to change. This past summer is when the changes seemed radical. First were some sensory signs, he started stiffening his whole body in a way that we only recognized because Jack had done it too, he started making more monotonous sounds and (as I now know it is called), jargoning. His physical development remained right on track, he climbed in a way that Jack never did, he was great with his spoon, which was an area where Jack always did and continues to struggle. His speech slowed, then essentially stopped. Long story short, because of Jack's history, mommy panicked! And thank God that I did. I had Natey in to Infants and Toddlers by September, and he showed severe deficits in all areas except motor development. If you don't have a child with autism, it never occurs to you that if your child wants his cup, he might not tell you. I will never forget the assessment that we initially went through. The evaluator asked me to put Natey's cup out of his reach, tuck it into the diaper bag. I did this, and watched as he walked over, tried to pull it out for a few minutes, then just walked away. He didn't cry, didn't grab my arm and pull me toward it, he just gave up and went along his way. My child was not content, he just didn't know how to ask me for what he needed! This revelation still gives me nightmares.
So Natey started getting services in the home once a week, I started him at Jack's occupational therapist, changed his diet, added some supplements, and hoped we were on our way.......nope. I did not see much improvement in Natey with these changes. More panic....Infants and Toddlers brought the head of their program to our home for further assessment and Natey qualified for 5d/week services in their autism program. We are truly blessed that our county has an ABA program, and doubly blessed that the developmental specialist who had been working with him was astute enough to realize the home visits just weren't cutting it. Natey has been in the program since the beginning of January, and now asks for more (guess what, no really, we have no idea until we try everything we own) and asks to go (where? we have no idea, and sometimes he is actually telling you to go). He told my mom to go when she arrived for a visit one day. I said, sorry mom, but I've gotta be honest with you, I am THRILLED! I have Natey on an even more restrictive diet than Jack's, he gets essentially 7-8 foods, and I spend approximately 10 hours a week cooking these foods to the diet's specifications. I am giving him methyl-B12 injections three days a week. We need to add a private speech therapist. We need to go to a DAN (defeat autism now) doctor. We need.....to do a lot more. But we are at least on the right path, and sometimes that has to be enough.
Now to me.....maybe I have retreated a bit....ok, alot. In my defense, it is very very difficult to go anywhere with the boys right now. I pray that this will change. Natey cries the minute I cross the threshhold into a store (Jack used to do this too, but is better about it now). The assault of lights and sounds and other sensory input is just too much for him. He bangs his head, he collapses onto me, he shuts down. It's too much for Jack too sometimes. Unfortunately, he has a tendency to curse which is just fantastic when you're out in public with your preschooler, let me tell you. But this is just one reason. It also has alot to do with MY issues, my fear that my children will not be accepted by their peers, or my peers. And it has to do with sadness....it hurts me to see my children among more neurotypical kids who are doing all of the age appropriate stuff. I am thrilled for the parents of these children, and love to see them. My boys' diagnoses are very raw right now, I am still trying to process how unrecognizable my life has become. I am not asking for pity, just a degree of understanding. I am blessed with a fabulous group of mommy friends who we met when Jack was just a newborn. I miss them greatly. And I will be back! We are doing a little better everyday and I am determined to do everything I can to help my boys.