From bad to worse……

So we met with thev neurologist this morning from the Cleveland Clinic. Long story short he is very worried about Gavin's loss of motor control. We were referred to a movement disorder specialist at the Cleveland Clinic that he works with. While we were there they took a ton of blood. Thy are testing him for everything he has never been tested for before. He is running a full genetic work up. Fragile X is one of the concerns he is testing for. He wants a spinal tap done because he is concerned Gavin doesn't have enough sprinal fluid. He is concerned because Gavin's left tempral lobe shows reduced activity and no one knows why. The spinal tap is on hold until we meet with the movement doctor in January.…

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Gavin’s horrible day

Gavin easily had one of the worst days of school yet this year. He lost it when his teacher offered to help him with something he was struggling with. He began screaming and punching himself in the face and head. They tried all the usual stuff to defuse him but nothing worked. He just esculated. They couldn't even get him down to the office. Luckily no one besides himself was hurt and that was all self-inflicted. Lizze talked to the teacher after school and told her the best thing to do is get Gavin away from the other kids and engage him as little as possible. If he hits himself let him go cause it's all manipulation. The docs at Akron said if he's not bleeding and he hasn't passed…

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Patiences, Autism and Gavin (An Honesty Post)

The patience required for raising Autistic children is immeasurable. I can nver seem to live in "the now" because I am always having to think 2 steps ahead. I feel like my patience with Gavin after the past 6 years is finally starting to disappear. He just complicates everything. It would be one thing if it were out of his control but so much of what he does to disrupt everyones lives is willful. I used you be the one saying he had no control over these things but anymore it really seems like he is choosing to do some of these things. There are times that I feel that he is without control of his actions but those times are fewer and fewer. There is so much speculation as to…

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One of thoughest parts of…

...raising an Autistic son (in my case 3) for me is what I call the "age gap". I have spoken about this before but it is something I struggle with everyday. I wish there was something like a truth mirror. By truth mirror I mean a mirror that shows a true picture of who you are. In so very many case with kids like Gavin, looks can and will be decieving. You look at Gavin and you see a 10 year old boy throwing fits and melting down when he doesn't get his way. The problems with outward appearances is that they are always an accurate representation of who they are on the inside. If you stuck Gavin in front of a truth mirror or looked at him through a…

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“1001 Tips For The Parents Of Autistic Boys”

"1001 Tips For The Parents Of Autistic Boys" by  Ken Seri is a fantastic and informative read. He literally has collected 1001 tips for raising Autistic Boys. These tips are compiled from various sources and put together in a way that is really easy and enjoyable to read.  He touches on some very important topics along the way ranging from diagnosis and intervention to planing for life after their 18th birthday. Not only is this a must read for anyone starting this journey but also those involved in their lives. Grandparents, aunts, uncles and even teachers could get a better understanding of life on the other side of an Autism diagnosis.  As a single father to an Autistic son, Ken has been there. I can personally relate to much of…

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Autism at the holiday’s

So today we are celebrating Thanksgiving with my family cause my mom will be working on Thanksgiving.  I knew it was a bad idea to think we could actually go some where for the holiday's. Anyway, Emmett John is ALL over the place and we are the ones that have to chase him around. We get little to no help. Everyone gets to relax and visit and we get to chase the kids around. We could do that more easily at home. So after dinner Gavin had a meltdown and literally almost took my mother out. Gavin was mad cause he wanted more desert and we said no.  We got him into the back room and he lost it for about 20 minutes. We then packed up and left. Happy…

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Please say prayer

We have another battle ahead of us. At this point I'm hoping we can still avoid this conflict but our past just keeps rearing its ugly head... When you have special needs kids you try to avoid conflict as much as possible. Not only do you not have the energy for everyday life now you have to spend what little you do have left in places other then basic survival. I wish that I could be in charge for a day. I would make it so that families like ours have much less to worry about. I would make it so money meant nothing and everyone had compassion and understanding for the plight of the special needs family. Sadly, I'll never be in charge and the world will still revolve…

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