Von

Von has been a challenging child to raise.  As I said in my last post, he started with jaundice and colic.  As he started growing older, I noticed little things that seemed weird. He lined up his cars rather than playing with them.  He would place something in the middle of his bedroom and if someone moved it, he would throw a temper tantrum.  By the time he was two, he still struggled with walking, but he was able to walk. He wasn't talking at all. He would point and say, "kah" for anything he wanted, whether it be his pacifier or food or one of his toys.

Michael stopped flying for a living when Von was 3 or 4 months old. He decided to go back to school full time and get his Master's degree. He had some credit hours but no degree so it was kind of like starting from scratch. He attended 2 schools so that he could take a total of 24 to 30 hours each semester until he got into the MBA program. Needless to say, Michael wasn't around a whole lot therefore wasn't truly seeing all of the strange things going on with Von. And I was working full-time so it was a struggle for me to see it enough to know something was really wrong.

Von was eating a normal diet when he was on baby food, he would eat anything I fed him from peas to chicken and even broccoli!  When we started feeding him a typical diet with texture rather than smashed foods, he started becoming a picky eater. His diet selections were getting smaller and smaller and smaller, until by the age of 2, all he would eat was hot dogs and peas! I could set food in front of him and he would refuse to eat until we put what he wanted in front of him. I tried even putting cookies, cake, ice cream and popsicles in front of him just to see if I could get him to eat anything new.  My mother told me that if he got hungry enough, he would eat. So, I stopped giving him food he would eat for 2.5 days before I finally gave in and gave him hot dogs and peas again.

I took him to his pediatrician and he told me that nothing was wrong with him and that all kids go through a phase of not eating much.  I didn't like that answer. I heard the school system would do Speech therapy and occupational therapy evaluations for infants and toddlers.  I had NO idea what occupational therapy was so I just requested a speech evaluation. The lady that came to our house to evaluate him said that I need to see someone in a private practice for occupational therapy because the services he needed, the schools couldn't provide.

So, I took him to an outpatient clinic that provided speech, physical and occupational therapy.  They told me that it was a good thing I brought him in because he would have likely been on a feeding tube by the time he was 5!!!!! They also thought that he may have a mild form of autism!!!

Obviously, we started him on therapy at the age of 2.5, when we had all the evaluations completed.  They put him in speech therapy, occupational therapy and food therapy! Who knew food therapy even existed!?!?! I sure didn't. So, we started going and Von started eating foods that I thought he would never eat again!  They discharged him from food therapy about 9 months later. He would eat ALMOST anything. To this day, he doesn't like sauerkraut or broccoli, but who can blame him. There are foods that he would prefer not to eat, but he will eat almost anything he is served. It was an amazing therapy!

After about 3 months of speech therapy, he was talking, granted he was very hard to understand. He would say something and if you didn't repeat what he said, he would say it over and over and over again until you repeated what you heard him saying. He wanted to make sure that you heard him.  After 6 months of speech therapy, they discharged him. He had gone from a vocabulary of 1 word, "kah" to a vocabulary of a 7 year old child!!  You could even understand the majority of what he was trying to say!  To this day, he will say some things over and over and over until you repeat them back to him or you respond in a manner that he KNOWS you heard what he said and he is 8 years old.

Occupational therapy... well, he still needs occupational therapy(OT) here and there, but he was discharged after 4.5 years.  I sat in watching his OT sessions. I thought, how absurd is this!! They are sitting and playing with him. What is this accomplishing?? After a while, I started asking questions. Why are you setting him in a bin full of dry beans, scooping the beans and dumping them on his legs?  Answer: This works on decreasing his sensitivity to touch. Why are you placing blocks one on top of the other? Answer: These are 1" blocks and they work on eye-hand coordination as well as pinch strength. Why are you clipping clothes pins in random places? Answer: Do you see how he has to use two hands to open in?  This strengthens his hands so that he can hold a pencil better when he gets older. What good does it do to swing my child on a swing? Answer: This helps with balance. Remember how he would be walking or running and would just fall over? This helps him find the middle ground and become successful when leaning, walking, reaching, running or jumping. Why do you have him on his belly on a scooter picking up bean bags and then taking him to the other side of the room on his belly? Answer: Do you remember how he will randomly run into door frames? He thinks he has enough space between him and the door, but he misjudges it because he is unaware of where his body is. The pressure on his shoulder and arm joints tell his body where those joints are.

When they discharged him from therapy, they had decided that it wasn't autism but something called sensory processing disorder. Sensory processing disorder is problems caused by not understanding your senses correctly.  A person touches you, but you feel a thousand needles pricking you. What would you do? Of course, you would turn around and slap that person's hand off of you! You sit down to eat something, you put it in your mouth and it feels like a slug crawling down your throat. What would you do? Spit it out!! You are walking down the hallway and you feel like your leaning to the side. What would you do? Lean to the other side, but what if you leaned to the other side and you were actually standing straight. You fall over.  These are some of the things my little boy was experiencing and still experiences at times.

Sensory processing disorder is hard to deal with. Imagine walking through a store, and the longer you are in the store, the brighter the lights seem. You are going to start trying to find your way out of the store. But then if your mom put you into the shopping cart, what are you going to do.  Cry "I wanna go home."  If you are young, you cannot explain why, so you just keep crying.  What does that look like to people around you.  I'll give you a hint... They definitely don't think you are a poster mom who does everything right.  In fact, you have several little old ladies come and tell you that you should get your child in order. You have people walk by and say things like, "Wow, if she would only discipline that child he wouldn't act that way."

After everything was explained to me, I started to slowly know what they were working on when they switched from one activity to the next. I would begin seeing the activity, evaluating what they were doing, thinking about his goals and then asking are you working on...this? As I watched I became more and more aware of what I should do at home with him. But I still had a lot to learn. Life with Von is still hard at times, but learning with him became easier when I started understanding where the problems stemmed from. We still have to let him stand while he eats, bounce and flap his hands when he is excited and cry when he is over stimulated. But we have come a long way from where we were.

Until another day! May God bless you in your path!!