On December 31st, 2013, I started looking back over our year with my son, Adam.
2013 was Adam’s healthiest year. He has been so sickly since he was born even prompting his pediatrician to do several blood tests to see what was going on because he was sick every other week. During 2013, we did not have to go to the doctor’s very much or even worry about sickness with him. I am so thankful.
2013 was also Adam’s biggest year of improvement! He learned to eat more foods, learned to talk, and did great in his first few months of school. Before the end of the year we received all the updated evaluations from his therapists.
OT – Adam met ALL his goals for Occupational Therapy in 2013. His therapist was very happy to see so much improvement and has set brand new goals for 2014, including helping him learn to dress and undress himself, which he cannot do at all, and more sensory goals.
Feeding – Feeding Therapy was gong great up until 2014. We were able to switch to a new therapist- one who was trained at the Marcus Autism Center, which is where we were trying to get Adam into several years ago. I am so thankful for this new therapist as she has really been able to help Adam progress.
She is starting at the very beginning in teaching him how to eat as the habits he has learned over the past years of his life have taught him to be afraid of food. This has us spoon feeding him everything he eats and at every meal, as he is not able to self-feed himself the foods he needs. He is also working on his chewing as his muscles are still underdeveloped and he has a hard time chewing certain foods.
This new therapist had worked Adam up to eating: applesauce, chicken nuggets (brand specific), cooked carrots and green beans, and spaghetti and meatballs. He was doing great until last week when we found out he had regressed. We spent hours at the table trying to get him to eat and I could not understand what happened. I still don’t understand it, but the therapist is not discouraged and will start from the beginning again. Hopefully this time it will stick.
Speech – Speech is Adam’s area of most trouble. A quote from his evaluation explains a little of what’s going on:
“Adam’s speech is difficult to understand and is characterized by multiple sound errors. He does not understand pronouns and cannot follow commands without use of gestural cues. He cannot combine 3 or 4 words in spontaneous speech and does not produce 4 or 5 word sentences.”
Adam’s word level is fair and conversational level is poor according to the evaluation. He also shows 19 characteristics of Apraxia of Speech which limits his progress. He has a severe delay in speech articulation and that is why we have so much trouble understanding him sometimes. This is frustrating both to him and us as parents.
Overall Adam’s improvement in 2013 was great! The ABA evaluation for his autism showed him at only about a year to a year and a half behind. Things were going good it seemed until early 2014 everything went downhill. His behavior got worse, he regressed in feeding therapy almost immediately, he has started hitting, and saying, “no” to everything. He is not listening well at all. We even called got called into to his cubbies class at church, because they could not control him.
I know that he’s a toddler, and that toddlers go through these phases, I know that we have a new baby in the house and everyone is still adjusting, but I am at a loss of what to do. How do I explain these behaviors, how do I fix them? I can’t ever figure out how much he understands. When we ask him questions, he can’t answer them. When I tell him something we have to tell him over and over in order for his brain to process it.
He can’t talk well enough to tell us how he feels or what’s going on, and I wonder how much he understands of what we say. We have some people saying we can’t discipline in certain ways since he is autistic and we have the therapists telling us other ways to help with the behaviors. But I can’t help but get this overwhelming fear at times that we aren’t doing it right.
I have a secret: I am not trained in “how to raise an autistic child 101.” I have no idea what I am doing. I am scared that if we don’t figure these things out while he is young that his behaviors will only get worse until we can’t control him. Maybe my fears are silly, maybe I am thinking too much, but the fear is always there in the back of my head haunting me and making me a little bit crazy.
There are times when I think I have accepted this life. That God chose me to raise a very special little boy with special needs. And I’m glad He did. But there are other times – times where I am sitting at the table for hours feeding my newborn with one hand and spoon feeding my almost-four year old with the other, times when I can’t control my son or make him listen or obey- these are times that I think, “God, why did you choose me? Why do I have to watch my little boy struggle, when all I want to do is help him? Why, God, why?”
“For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope.” – Jeremiah 29:11 (NKJV)
And that is what I have to hold on to. God’s promises. That’s all I need, I just have to hold onto it like never before. Today, if you are struggling, hold onto God’s promises. Find a verse that fits your situation and hold onto it like never before. God has not forgotten me and He has not forgotten you either. Have hope.