Sunday, October 30, 2011

Update on Andrew...

I apologize for my lack of blogging here.  It's been a little crazy with so much going on.  Andrew went to the Shriner's Hospital in Greenville, SC on 10/05/2011 for an evaluation by a pediatric orthopedist.  They fitted him for his AFO's (braces).  They also advised me that his tibias are curved causing his feet point downward and turn in.  They are hoping that his growth will correct it by the time he's 6 years old.  If not, surgery will be considered to correct it.  However, they don't seem to think he will need to wear the AFO's for very long, which are for another issue.  His heel cords are hypertonic (tight) causing some instability.  His hypotonia was also confirmed.  I was very pleased with them.  They were great and were even able to cast him for the AFO's without using the saw to cut it.  It was definitely worth the drive.  We will be returning for a follow-up evaluation in 6 months.

 He has adjusted to his preschool very well.  He is attending an EC Prek 3 days/week for children ages 3-5 through our local school system.  They have recently evaluated him for an augmentative communication device or to decide on a form of communication to work with him to allow him to have a way to communicate his basic wants and needs.  Hopefully we will hear from the evaluation soon.

He continues to have his good days and bad days as well as good nights and bad nights.  We are looking into getting him a safety bed for his safety and my ability to get some sleep.  It is not safe for him to be up during the night without adult supervision.  However, these beds are extremely expensive ($5-6,000).  I really can't put a price on his safety, so I'm exploring options to be able to get this much needed bed for him.  If there's anyone out there that has received one of these beds, please contact me with any information and let me know how well the bed has worked for you. It's very expensive caring for a child, or in our case 2 children, with special needs.  If we were to provide everything our boys needed, we would be bankrupt by now.  I spend a lot of time searching for any services possible for our boys.  It's sad to think that we live in America where services are available to help our boys and cannot access them because we are not wealthy enough to pay for them.  Our country needs to do a better job providing for our disabled children.  Middle class families cannot afford to provide the appropriate care these children need and many go without needed services that can make an enormous impact on their future outcomes. Private insurance refuses to cover much needed therapies and care that these children need.  The real tragedy is, if I was to turn my children over to the state, they would receive better health care and much needed therapies than they do through private insurance.  (Which, by the way I would never do).  Okay, now I'm done venting about that issue. 

Lately, I have been putting a lot of time into my older son's educational issues.  As I discussed earlier he has disabilities as well, but they are not to the extent as Andrew's.  However, I still have to make sure he is getting everything he needs for him to reach his full development and potential.  There are times that it's difficult keeping up with the issues that need to be taken care of for both boys at the same time.  I'm having difficulty with the school not providing the necessary supports for my son to receive an adequate education according to the laws.  It's amazing how so many of our educators are not aware of the laws in place for children with disabilities.  They are allowing special education teachers to write Individual Education Plans that are completely untrained to do so.  This results in IEP's that are not providing an appropriate education as outlined according to the laws.  I have been spending a lot of time advocating for him.  I advise anyone that is fighting for the educational rights for their disabled child to not give up.  If you don't advocate for your child, no one will.  Advocating for your child takes a lot of time and research.  I'm realizing that sometimes we have to point out particular laws to the school to get what needs to be done.  Until I get things resolved for him my time may be limited on blogging.  However,  I am going to try to do better to keep everyone up to date on Andrew's journey.      

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