Our Continuing Journey: Living with a child with mild-to-moderate Autism; possible FAS/FAE ~ by Charlott Reynolds
We adopted our son and his twin sister when they were 6-months-old. It became apparent they had many possible developmental delays — this was due in part to the fact they were premature as well as drug exposed. However, our son had a few more issues that needed medical help. We began to work with both of our children with the assistance or early intervention. They supplied us physical,speech and occupational therapies.
Within a few months both our babies seemed to be making great strides in catching up to their desired developmental stage. Nevertheless, something just was not right with our little son. He crawled, sat up, pulled up, yet made very few sounds. He enjoyed being held and cuddled but only by his Dad or me. He was not showing us his needs in any way. He did not like to touch anything soft, or have it touch him. He crawled with his hands closed into a fist, and did not like any kind of stuffed or soft toy.
The older he got the less he slept. By the time he was 15-months-old he was only sleeping about 4-out-of-24 hours in a day, and not all of those were at the same time. He was only 17-pounds, and was not growing at normal rate. We knew something had to be done for him.
The first stop was the pediatric neurologist (NOTE: I DO NOT like to give children medicine but this child’s life was in danger). The neurologist told us he was a very anxious child and needed more sleep in order for him to grow. He gave him a small dose of clonidine and regular sleep patterns were soon in place.
Our neurologist referred us to a gastroenterologist where we discovered that our son had reflux. He was given medication to reduce acid and a new high calorie diet. Afterward he began, although slowly, to steadily grow.
By-the-time he was 2-years-old my husband and I knew our son was still dealing with issues that were abnormal for his age. Our son did not use language skills normally, he had words but they had no meaning. For example, he would be holding the door knob to the back door and scream, “Drink” or go to the table and say, “Outside”.
At this point we were still working with a speech therapist and she thought we should try sign language. It helped some but not enough. Our son had two ways of dealing with things in his life:
- To shut down, and I do mean shut down — he would just turn off, fall to ground just as if he had fainted and would not move or respond.
- Begin to throw-a-fit, not stopping for two-to-three-hours.
At 2 ½-years-old we were referred to a developmental pediatrician. There we were told our son had mild-to-moderate autism, and possible Fetal alcohol syndrome/effects (FAS/FASE). This was the best Dr. Appointment of our son’s life. I know most people will not understand why I feel this way, but it just was.
All the pieces of this “wonderful puzzle,” that is our son, began to make sense. Our pediatrician told us about a medication that was known to help about one-third of children with autism. I was very hesitant at first; remember I do not like to medicate children. However, after much prayer we decided to give it a trial run…
He takes it to this day! He can now talk, understand and comprehend. He is still autistic, and we still have many issues we work through every day — knowledge is power though. We are now empowered by the knowledge we needed to help our son. Once you know what you are working with the job becomes easier.
He views life and draws it in comic-book frames although he has never seen a comic book in his life.
He can read anything, yet he cannot retell the story or answer any questions about it. Yet he can draw it and tell the story through comic-book type drawings.
He cannot do the simplest of math lessons.
He can play the drums very well but cannot understand any formal instruction on ‘how-to’.
He has a very hard time being socially appropriate, yet he is very funny.
He constantly licks his fingers but he cannot stand to have his hands dirty.
He misbehaves in groups of children, then cries because he has no friends.
He is very blunt, and you never know what he will say next, yet he always tells the truth.
He is very dramatic — both when he is happy and when he is upset. Nothing is small with him.
Children his age do not know how to deal with him. However, babies, small children and most adults love him.
He wants to be treated on the same level as his twin sister but does not have the ability keep up with her.
Our son is such a blessing to our home. Life with him is never dull, always funny. Sometimes hard and frustrating but always worth the journey. We have a large family and he is such a large part. We are so blessed by him. He may never be able to live alone, he will always bring joy to this family.
We thank God for allowing us the blessing of raising our special, beautiful puzzle.