Adam, Autism, and Apraxia
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On December 31st, 2013, I started looking back over our year with my son, Adam.
2013 was Adamâs 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 doctorâs 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 –Â 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 –Â 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 –Â Speech is Adamâs area of most trouble. A quote from his evaluation explains a little of what’s going on:
âAdamâs 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.â
Adamâs 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.
I may not know what is like but understand what u going through….God is watching over u…
Thank you for commenting and for your encouragement.
I feel like you reached in my brain and wrote what I was thinking. I even have a post scheduled for later in the week touching on his. Disciplining and special needs confuse me so much as I don’t want to punish my child if his behavior stems from a lack of understanding. It’s hard to know what to do and I just hope my best is enough. Hang in there. You are not alone and you will do your best and Adam will improve because of your love
SO glad I am not alone in this and so crazy that you have been having similar thoughts! It’s such a confusing thing and while I want my son to be raised well, I don’t want to have expectations of him that are too difficult for him at this time. It’s just one of those things I am taking one day at a time. Thank you for your encouragement and for commenting, I appreciate it!
Kathryn, what a beautiful, honest post. Thank you for the update on Adam and for sharing your heart.
Your fears are not silly! I felt them all, too! Jack does not have Apraxia but he struggled with using pronouns correctly. He spoke in third person and could not answer questions until very recently. He would have meltdowns every day for hours and hours. It was exhausting, heartbreaking, and frustrating. But he has come such a long way, and Adam will, too. I promise!
My heart is with yours. God does have amazing plans for him and for your family. I am praying for you guys!
Thank you. I know you understand a lot of these struggles. I am wondering if the understanding questions is an autism thing then? He just doesn’t get questions at all… Thank you for your prayers, I am praying for your family as well.
Yes, questions are so tough for our kiddos. Jack’s speech therapists have been working with him on answering questions for several months now. At first, he did not understand questions at all but he is making progress bit by bit. He is now able to answer “who, what, and where” questions. “Why, when, and how” are still tough for him. But he’s getting there đ
Yes, Adam didn’t understand questions at all either. I ask him how is day is and I hear nothing from him… ABA is working on him answering his name and age so that if for some reason if he ever gets lost at least he could answer that lol. I am hoping that it will get better soon so you saying it’s so gives me hope!
I can’t pretend to know your pain. But I know there is a light on the other side of the tunnel. You can do this. Just try to be present and take it one day at a time which is the best for right now. Hang in there!
Thank you Dina, I appreciate that. One day at a time has always been my moto, whether it was a deployment or a special needs struggle, so thank you for that reminder. Blessings!
From one ‘special’ mom to another … I know how there can be good days and terrible days. Days when we are strong and days when we feel like we are barely holding on. But through it all we can look back and see God right there helping us through. We may never know, in this life, the reason why. It is our faith that carries us through and some day when we stand before Him, we will see His glory and all will be clear and we’ll say, “Oh, so THAT’S why you did it like that!” But for now, sending hugs and a prayer. It’s not always easy and I know how you feel.
Laurel
author of ‘Amanda, Perfectly Made’
Thank you Laurel. It’s always nice to hear encouragement from another mom who gets it. Appreciate you stopping by to comment. Have a great day!
You are doing such a fantastic job and your love for Adam really shines through in this post. That’s all you need to do. You know Christmas and all the changes are hard, and changing back and there being no Christmas is also hard. I just cope by telling myself that things will improve again when things settle back down. Just concentrate on the positive and try to ignore the rest.
Hugs I know it cannot be easy for you.
Thank you. I really appreciate that. That is so true about Christmas too. My son had a blast this year and was really sad to see all the Christmas stuff go away.. ( he still walks around telling people Merry Christmas! lol) and between that and the new baby t’s probably a lot for him to take in. Thanks for the wise words and encouragement and for commenting!
this was such a touching post, kathryn. thank you for being so honest and for your ability to lift all of us up with your encouragement. look to God and have hope. exactly what i need to hear.
I’m glad it helped you. Thanks for stopping by and commenting. đ
Ohh !! I know how you feeling! I have almost in couple days a 4 year old who is delayed in speech and some of his vocal are babbling and there are times I go crazy and wonder why? How am I gonna go through this with him? I feel really bad for him as he struggles sometimes and desperately wants to speak and I feel extremely guilty as if everything is my fault! Did I talked to him enoug? Where did I go wrong ? And have 2 types people giving you advise that you just walk like a chicken without a head! All I really want is to stop and take a deep breath and think.
You don’t have to explain anyone, this is how our son are and we are the chosen helpers. Take a deep breath and pray a lot!
Take one step at a time, if it helps try make goals you like to achieve, per weekly or monthly .. Your little homeschooling project if you like.
This has helped me and my mind at ease. Panicking and driving myself crazy isn’t going to help for him as well, but you just can’t help it every time you got a appointment or get evaluation reports.
Hang in there momma, your son knows you love him and that’s good enough!
Xoxo