Wednesday, August 29, 2012

Fragile. Handle with....

So happy birthday little guy. Today your turned 2 years old. Today is a birthday we probably won't forget because it was pretty memorable. I should be up for mother of the year after scheduling this apt today! Thankfully he is 2 and probably won't remember this so I guess I am off the hook for now when it comes to being the root of my son's evil when he ends up on a therapists couch years from now because he is all screwed up ha ha ha!

Today we headed to Lubbock to meet with a Pediatric Behavioral Specialist regarding the problems H has been having. Honestly by the time we got to the doctors office part of me wanted to turn around and go home because I felt that he was fine and I was losing my mind it was all in my head. I figured Chris would kill me for saying lets go home so I sat waiting patiently for the doctor to come see us. I swear it was forever before she came in but it was only about 10 minutes efore she was in and got to work.

We discussed all of the notes I came with. She appreciated how thorough we have been when it comes to tracking everything. I guess it has made it easier to come up with a diagnosis and such for him. I have never seen him take to a new person like he took to her. She let him climb all over her and play with all her neat doctor stuff. He ended up taking the stethoscope to his head and leaving a nice bruise! She was calm and gentle letting him explore each item before using it to put him more at ease. Her bedside manner with him was fantastic.

She said something to us that hit me like a rock "You have a very special boy who really has me baffled" Great we stumped the specialist! Actually she had just never seen it present itself in this way before. She said Fragile X. I looked at her and looked at Chris. I had seen it but not read about it because I was completely focused on the Spectrum and nothing else. H has A LOT of characteristics. He also displays A LOT of ASD also. With that we were told to go over to the hospital to get blood work done for some genetic testing and to confirm her diagnosis. As soon as we got in the car I pulled up Fragile X. What I read astounded me. My son minus 2 things fit the bill perfectly for this disorder. I began to cry. How did I miss this? Why didn't I think of that? When I read Fragile X in other spectrum articles I over looked it because of the name. I figured it had to do with something that was way out in left field.

Fragile X -  H does not have the low muscle tone and long face but everything else fits. A simple DNA test ( 8 vials of blood later) to rule it out. She is pretty convinced this is it. Until the test results come back we will stay on our course of therapy and then add to it once we hear back. We go back in January for another apt to see were we are at. At this time he will almost be 2.5 and she said it would be very clear cut how severe of a disability we are looking at.

After all this mind blowing information we put it off to the side and focused on H's birthday. We went to lunch and took him to the mall, which was nice and big and just let him go. He enjoyed it. We are heading home now to spend the rest of the evening by the pool. We are going to spend the rest of our evening focusing our on our son not our diagnosis. This won't define my child it will only  be an answer to the means of helping him. Happy birthday sweet boy. We love you so much

Monday, August 20, 2012

"It could be worse".....

I know it has been almost a month since my last entry. I started to come up with a few entries and then just got caught up in life. There has not been to much to report and what I do have to say I usually just put on H's Facebook page. I do have to say I am pretty impressed to over 100 people are following our page and that a lot of them are people whom we do not even know and found our page through friends etc. While right now that page is simply a means to not bombard my news feed with updates etc of H depending on the outcome of our next apt it might be used as a means to get the word out on fundraising. Here is the link to his page.

 Why might you ask would we be fundraising. For a few reasons. One of which most of his therapy, testing and appointments are not covered by our insurance. If it is required that we would need more types of therapy, more therapy sessions etc we would have to find ways to cover the costs of them. There is also special things H needs for therapy reasons and some of which are just to much for us to cover out of pocket at this time. Lastly we keep tossing in the idea of a service dog.  This would be trained to search and protect H. It would keep him from getting out of our house but if he did this dog would be able to track him. It would be used as a means of comfort when he is feeling overwhelmed and keep him safe at night. Such as if he would wake up and wander from his room etc the dog would alert us and the dog would also try to apply pressure to help him find comfort and go back to sleep. This is amazing piece of mind but comes with a giant price tag!

As some of you have read on H's page and my personal page it has been a tricky few weeks in our home. I used to always tell myself "It could always be worse" I did it as a way to psych myself to think that things are not as bad as they seem. Not long ago I stopped saying that because it seemed every time I uttered those words it would get worse. I have taken that line out of my daily use and now think of it as an insult in a way. When people I know say it to me I want to lash out and say "Really do you think so? Please tell me how it could be worse? Tell me how much more do you think myself and this family have to take before we can say ok it's worse game over?!" Trade places with me walk a mile and tell me if you still feel that "It could be worse!"

The events of last week have still got me scared and depressed. My child got out of this house and wandered about at night. My child has almost set this house on fire twice, my child has found ways to make a seemingly safe home feel like the most unsafe place for him to be. It hurts to know that my child is not safe in our own home. That even thought I covered outlets, locked cabinets, lock up chemicals, don't light candles, baby gates on the top and bottom stair, use window screens etc it is not enough. H can break off those plastic cabinet locks if he yanks just right, he is starting to pull out the outlet covers, he can open our 3 step baby gate almost as well as an adult, he can move a chair to our front door move our dead bolt and turn the knob and walk out of our home. I am hoping to come into a small fortune soon because this how will make Fort Knox look like childs play! Our landlord is coming tomorrow to help us see what locks, alarms and sensors we can have them install for us. I have been given a few good sites to find industrial strength baby proofing items for all the other stuff. For now he resides in our bedroom with his bed in our room until I know without a doubt in my mind he is safe and we are safe.

Most parents at this stage of parenting are more concerned about the commonly known terrible 2's I have recalled to memory more and more lately a conversation with our old pediatrician on base right after H had turned 1. H was in the room waiting for his check up writhing on the floor arching his back screaming and yelling and she walks in looks down at him looks up at me and with a sympathetic smile said " Sorry looks like the terrible 2's came a year early for you" So while most of my friends have kids about to turn 2 and they deal with this I have been doing it for a year already and for now there is not light at the end of my tunnel. I swear with each passing day it gets a bit more dark and a bit longer.

I can say though that some good has come about lately. We recently acquired and iPad for H. This is his means of communication, helping with problem solving, hand eye coordination and learning to use ASL. So typically children at the age of two have an enormous vocabulary with the ability to say 2 and 3 word possibly 4 word sentences. H can do that but not verbally. He is now able to have a 2-4 word signing conversation. He can ask us for milk in a cup please, and thank you, he can ask for help, all sorts of things and understand when we sign to him instructions and directions. A small part of our communication barrier is crumbling down and it gives me hope. He is so independent however he can go to the fridge pull out a container of milk bring us a cup and tell us with those actions what he needs, or bring us a diaper and take off his wet one.

Answers is all I want. Not a pep talk to make me feel better. I hope next week can give us that or provide us with a clearer direction of where to go and what we are dealing with. That is all we want.