It is very difficult to put in words what it is really like raising two boys with autism. Autism does not consist of one issue. Autism has various issues as most of you are aware of. When I say Trenton has severe autism.....I am summing all of his labels into one. Trenton's form of autism also brings along anxiety disorder, mood/personality disorder, sensory processing disorder, ADHD, sleep disorder, and restless leg syndrome. Trenton fights many battles each day.
As of right now I do not know what all Andrew's autism entails. Andrew is much milder so if he does fight any of these other disorders, they are at a much milder level than Trenton's. Andrew does have sleep issues and anxiety issues that I know of for sure but they are milder.
Tonight I want to talk about one small component of autism and give updates on both boys. Speech and language is one ingredient to an autism diagnosis. Both boys have issues with this obviously or they would not have autism. Again, Trenton and Andrew are on different levels in this area.
Let's discuss Trenton's expressive and receptive language first.
On some days I feel like Trenton is no closer to expressive language than where we started two years ago. I shutter to think what Trenton's expressive language would be like if I didn't start getting him the help he needed two years ago. Trenton remains non-verbal. We may get to hear one or two words a day. Most of the time it is after having a verbal prompt. For example, Trenton was crying the other day at school for a while. When asked if he wanted to stay and play or go home. Trenton was able to say, "home". This was a rare occasion. On most days, he would have just continued to cry. Another time when I get to hear Trenton say a word is when he is wanting a snack. I will give him two choices and hold up a package of fruit snacks or a package of cheez its. Trenton will say, "snack" for fruit snacks or "chez" for cheez its.
Unfortunately on some days we hear no verbalization.
Trenton will go through periods where he is able to say a few more words each day but those time are always short lived. For instance, this week Trenton has repeated or spontaneously said more words than he has in a long time. He goes through periods. He will randomly have weeks every few months where he tries to say more than usual. For example, the other night he looked at his play doh and said, "play doh". I was so happy!! It was so beautiful!!!
For the most part during his therapy sessions, Trenton will say words. If the therapist ask Trenton, "What is this?" while holding up an object that he knows, Trenton will say the name of the object. Trenton can only do this in a one on one structured setting. On some days, his therapist can't get him tosay much at all either......autism is such a strange, puzzling disorder!
As of the past few weeks, I am having a difficult time getting Trenton to use his iPad for communication. He has not typed in a month. When I show him his communication app, he pushed it aside. Why? I am not sure. This is a common trait of severe autism..sometimes they can do something and sometimes they can't.
Trenton's receptive language is really improving. Two years ago before therapy, he did not understand one word. Although I am fairly confident that he did understand more than what we gave him credit for, it is simply the fact he lives in a body that would not let him express that he understood.
Now for Andrew....
Andrew has speech but its not functional for a 2 1/2 year old. When Andrew was 18 months old, he could name any object that you placed in front of him. He can still do this. He has not expanded on this for a year. When Andrew was 18 months old, he started repeating what we said. Andrew still does this, it is called echolalia. Echolalia should be completely gone by 26 months. Andrew still does this. Along the way, Andrew started expressing learned speech. This is difficult to explain. For example when it is time to watch TV....Andrew will say what he has learned to say which is..."What do you want to watch? Monsters, planes, or Lorax? Planes". He simply asked himself the question that he knows I will ask and answers it. Another example is.... Andrew has learned to say, "We are home." when we arrive home. Tim and I both have said this when we get home. Although Andrew takes it to a whole different level and he will say, "we are home." randomly throughout the day whether we are home or not. It is learned speech. His brain allows him to vocalize but he can only say what he has heard numerous times. He can't spontaneously say words or phrases. He simply names objects, repeats what you say, and says learned speech. Andrew's hurdle will be turning his learned speech into spontaneous functional speech.
I am confident that Andrew can read. One day this past week, Andrew saw the words, Mater Tall Tales. This is a Cars cartoon. There was no image...nothing...but the words. The second Andrew saw the words, he said "Mater Tall Tales."
He did this with the words, Toy Story a few weeks ago.
Andrew has a photographic memory needless to say just like Trenton. I believe his photographic memory has a huge role in his learned speech. He just needs to hear something and he will say it from memory. An example of this is....Andrew can already tell you the first 5 books of the New Testament. His Sunday school teacher has started doing this with his class and Andrew picked up right away from the fact that if he hears Matthew....he knows Mark, Luke, John, and Acts follow! Super proud of my boy for knowing this already!!!
If Andrew has something on his mind and he does not know how to express it, he gets upset. If I try to help him express what he wants or if I try to help figure out what he wants, he gets even more upset. When he reaches this point, he will scream, shout "no", put his hands on his face, and fuss. Sometimes he will do this for only a few minutes and sometimes it can last for an extended period of time.
Andrew has always had good receptive language skills. He has always been able to understand what we say for the most part. He is unable to understand questions however. If you ask him a question, he will either repeat it, not say anything, or say "no".
Every day is a HUGE struggle in our house. I really can't put into words what my life is like 24/7 and I REALLY can't put into words what Trenton and Andrew's life is like. However, they have made me a better child of God. I say prayers and thank God for some of the smallest things in life that I know I would have never thought about praying and thanking God if my children were neurotypical. We embrace and celebrate the smallest of things in life.