2011 Is Already Looking Good!

Well, it is a new year and I am feeling very hopeful for a good year! Recently, Parker has made some tremendous progress in gross motor skills. He is walking a lot and on his own. If you don’t have a special needs child, that may not sound like much. To those of us with a child who has had such slow development, this is huge. Parker is 9 years old and until the last few months, he almost never would venture out on his own on foot. He would walk holding a hand or crawl or scoot around, but, not stand up on his own and take off walking. It is great!! It is also scary because he is basically a 4 foot tall, 45 pound toddler. He does very well with his walking, but, just like a toddler learning to walk, he falls a lot. Unlike a toddler, he falls hard from so far up. I am trying not to be too much of a mother and not chase after him. It is difficult though. I’m sure the more he walks around on his own the better he will get. I just hope he doesn’t break a bone in the meantime.

Last week at his OT session, I took video of him because I was so amazed at his recent progress with throwing. He has never been able to throw anything. We have tried and tried to help him, but, he couldn’t do it and he didn’t want to do it. About a year and half ago, he finally was able to lift a beanbag and drop it. We were thrilled with that accomplishment. In the last several months, we have been pursuing the throwing again. Until about a month ago, he still would just lift the beanbag and drop it into a bucket. In the past couple of weeks, a light bulb seemed to turn on and all of a sudden, he is throwing, rather than just dropping the beanbag. With beanbag success, we moved on to throwing a small basketball into a low net. He was slow at first and then Wow, we were amazed at him. Since Parker tends to gain skills and lose them, I was excited, but, suspicious that it may go away to the place where lost skills go. I should add that it is still possible that this newly acquired skill will disappear. I am not being overly optimistic here, just happy to see the progress. Depending on seizure activity, he has always gained skills and lost them. I am told that the ability to do them isn’t gone. They are still there somewhere, waiting to make another appearance at the appropriate time. But, for now I am excited and eager to encourage his new talent.

There are many other skills I wish would come back or make an appearance, too many to mention. The one I will mention is his speech. Parker has had speech come and go so often that I can’t remember exactly what he was able to say and when he was saying it. He began with sounds at about 5 or 6 months of age and we just assumed that this skill was to be right on target. We also had no idea that he had Mowat Wilson Syndrome until much later. We have always been extremely concerned about his speech loss and since there was no real explanation until more recently, we were even more anxious about the loss. Now, I think it is more expected. When he gets speech, we are thrilled and do everything we can to help enrich his speech and to encourage it along. But; as quickly as it comes, it goes away and we just have to accept the loss and wait until it appears again. I still have a great hope that someday it will appear and not disappear. Sometimes, it will emerge all of a sudden in a particular situation; just a bleep of something he once could say on demand makes a quick appearance, almost to tell us that it is still in there, just not ready to become a part of his life yet. I must say that those quick speech visits continue to give me hope for some speech in the future.

At the very height of our speech success, Parker had about 15-20 words or word approximations. He has never spoken to us in sentences and who knows if he ever will. What we are hoping and praying for is for the words he had to return and to add on to his word bank. Just having a few words makes such a difference in our communication with him. Since he doesn’t sign, other than a few Parker signs, he has adapted ways to let us know what he wants and needs, but, I am sure there are a great deal of wants and needs that go unaddressed. You would be surprised to see him in action. For example, one morning I asked him which cereal he would like in his bowl and he picked up a piece of the desired cereal and dropped it in the bowl. Another time, we were eating dinner at a restaurant and when the dessert arrived, I was going to ask him if he wanted some. Apparently, he really wanted some and stuck his hand into the hot fudge sundae to make his desires clear. He does find his ways of communicating, but, it would be so much easier to have him verbalize at least some of his desires. He has a speech device for communicating, but, unfortunately he can only use it minimally because of his need to push buttons. His desire to push the buttons tends to trump his desire to express himself.

Speech abilities aside, I am thrilled and so proud of his ability to throw and his newly acquired ability to walk around on his own. We will keep encouraging him in these areas and hope they stick and not go away, and in the meantime we will pray for the reemergence of the ever elusive speech.


About Lori Linn

Besides writing, Lori has been an Actress both on stage and in film, is currently a member of SAG and AFTRA, and is a credentialed teacher as well as her full time job as a mom.
This entry was posted in Mowat Wilson Syndrome, disability, special needs and tagged , , , , , , , , , , . Bookmark the permalink.

One Response to 2011 Is Already Looking Good!

  1. Bria Phillips says:

    I’m so proud of Parker and so glad I get to have a front row seat in watching him make these gains!

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