"Keep On, Keepin' On"

"Keep on, keepin' on," that's what we're doing at this point.  It's been a while since I have posted.  Things have been really busy around here.  Andrew was officially recently approved for services through the state for children with disabilities.  Now we have an aide coming in each day to help with him.  I'm very grateful for these services, however, it's a big adjustment having someone in your home daily that you don't know. 

Andrew will also be able to receive additional therapies outside the school system.  I have been wanting this for a long time and it's definitely long overdue.  He's been having an increase in seizures at night and has had to add another seizure medication to his regimen.  Around the same time, he also had an increase in his meltdowns.  Now we have had to reluctantly had to add another medication for that as well. 

We are in pursuit of a service dog for him.  We are hoping this will help with his behaviors and give him the sense of security he needs, allowing him to possibly come off of some of the medications he is taking.  Also, this will hopefully help provide a bridge for him socially as well.  Currently, other children do not approach him to play or engage with him. 

We recently went back to the Shriner's Orthopedic Hospital and he was able to quit wearing the AFO's (braces-ankle, foot orthotics) for now.  Yeah! One less thing to mess with!  They are just going to continue to monitor his growth in his hips and tibias for now. 

Pray that his seizures get under control!  The neurologist has also recommended intense ABA Therapy and if there's anyone that knows of any in the Charlotte, NC area, please let me know.  Our next step is to work on starting all of the therapies that he needs, pursuing a service dog, and possibly a safety bed as well.  If anyone has any recommendations in regards to any of these, please let me know.  Thank you all for your thoughts and prayers! 

I Never Imagined...

I never imagined that my life would be where it is now.  If someone had told me 6 years ago that I would be where I am now, I would have looked at them like they were crazy.  I view my situation as one of those we think of happening to others.  I would have never in a million years have expected to be on this journey.  I have learned more in the last six years than in the first 32 years of my life.  Each day is a remarkable learning experience with Andrew. 

Being a mother is a selfless job.  However, being a mother of a special needs child takes "selfless" to a whole new level.  If someone would have told me that my hobbies would consist of; researching medical and developmental struggles that my boys face to better understand them and provide them the help they need, researching and learning the special education laws, understanding my rights as a parent and my child's rights regarding their education, advocating for both my boys, educating myself on how an Individual Education Plan should and should not be written, spending many hours at IEP meetings and locating an advocate for these meetings when my child's education needs aren't being met, searching for community services available for disabled children, educating others about children with disabilities, promoting acceptance, and the most important hobby of all...caring for Andrew's complex needs. My life is not filled with my dreams or desires.  Neither is it filled with whether or not my boys are involved in the latest activities and sports of their typical peers.  Instead, it is filled with ways to provide for both my boys' needs, and my daughter's.

I still wish there was so much more that I could do to help my boys.  Many days, I feel as though I'm just not doing enough.  Others tell me that I'm such a strong person, when actually I feel very weak.  I never imagined.....   However, everything I do now has a meaningful purpose and I plan to use my life to somehow make a difference for others.
    

Autism Sunday 2012