Saturday, December 31, 2011

Reflections of 2011

As 2011 comes to an end, I reflect on the year and look forward to a new one.  Looking back on the year, we had many struggles.  So many things changed for us as a family due to the struggles that Andrew is faced with.  It all started in January.  All three of my children were still recovering from the flu.  Andrew began wearing his first set of AFO's (braces-ankle foot orthotics).  By January 10th he suffered a significant burn from a warm-mist humidifier.  He is still currently having issues with these wound areas.  He received 2nd-3rd degree burns over about 9% of his body.  The neurologist began investigating to find out more of what was going on with Andrew.  After tests and procedures to rule out some things, it was discovered that he was having multiple seizures during his sleep.  During this same time he also received diagnoses of Autism and a sleep disorder.  This year Andrew and I have had very little sleep.  His behavior changed so drastically that he required medication to help.  We began the year with one medication and now he is taking five.  All the while, some close extended family became more and more distant and did not want to hear about Andrew's condition.  They wouldn't even call to check on him when he had been in the hospital and under anesthesia to have testing done.  Out of all of our family we have two who really take an interest in Andrew.  I'm very grateful for them.  I'm also grateful for the support we have received from friends and our church family.  Thank you to those that have given us that support through encouragement, acceptance, and prayers.  Please continue them through 2012, we really need it!

Things I've learned this year as a special needs mom:
  • God only gives us what we can handle with the support of others.  You can very well have more than you can handle without that support!
  • The little things that use to matter or bother me, no longer do.  I no longer have time to worry about what I call the petty things in life.  I have a much more important task at hand that consumes a lot of my time.
  • I'm only human.  We all have our breaking points and I discovered mine.  This doesn't make me a bad mother, just human.  As a special needs mom, we have to go above and beyond the typical mother.  There are times that we can only endure so much.
  • It's okay to cry because of my job as a special needs mom.  It in no way means that I resent Andrew in any way nor do I love him any less.  Just like other special needs moms, we didn't choose this nor did our precious children.  I use to feel guilty about being upset over the situation.  I use to tell myself the situation could be far worst.  Then I realized this doesn't change the struggles that we are dealing with.  No matter what situation you are given, it could always be worst or you think of someone else who is going through a more difficult situation.  I use to do this instead of allowing myself to grieve over the loss of what might have been.  I discovered that this is not healthy. 
  • I have learned to say, "Why not me?," instead of, "Why me?"  I'm no different than anyone else and why would I be exempt of the possibility of this happening.  Let's face it, this could happen to anyone and has happened to many others.  I'm in the minority, but not alone in the situation. 
  • Discovered that people I thought would never discriminate against someone because their abilities are different..will.  We have a long way to go as a society for acceptance.  There are still so many stereotypical views towards those that are developmentally disabled.  Being able to do something that someone else can't doesn't make you a better person than them, nor does it make them less of a person.
  • Acceptance.  I have come to fully accept and realize that my life is different and I won't be able to have the life of a typical mother.  I embrace it and focus on what I can do to help Andrew and my other two children that are on this journey as well.  We very seldom all go into a restaurant, even fast food.  It has to be a drive-thru.  Date nights are very few and far between for me and my husband.  We don't go to movie theaters or entertainment outside the home.  My 12yr old visited the movies once this year with her grandparents.  But, it's okay because we spend a lot of time together as a family.  There are a lot of family movie nights in our home.  Even our family vacations are different.(I'll talk about that on a later post)  However, I'm completely okay with all of this.  These things are far from the stresses of caring for a special needs child.  If these were the only things we had to change, it wouldn't be that hard.  I miss some of these things from time to time but they do not cause me the stress of having to deal with all of the other things that come our way.
  • Andrew will develop on Andrew's time, not when the experts say a typical child develops.  This is what makes him special.  He can offer just as much to others regardless of where his development goes.  He has already proven this to me.
  • Patience.  I have far more patience than I thought I ever would, but it's still not enough.  I have discovered my level of patience through this journey.  Andrew and my other children deserve all the patience in the world, however I'm just not able to provide that for them.  I just hope that they forgive me someday for the times that I didn't have the patience they needed.
  • Special Education Laws.  I never imagined that I would have to educate myself as much as I have on all of the Special Education Laws.  This has been necessary to ensure that my boys receive their education according to the law.  I breaks my heart to see the other children that don't have anyone to come in and advocate for them to ensure that they receive the same opportunities.  If parents don't take the time to educate themselves on these laws, sadly the children do not get properly served.  Most parents assume that the schools will automatically provide an appropriate education according to the law.  This is far from what actually takes place.  Most of the staff within the school, including the special education teacher, are unaware of what the law says.  I have found myself educating staff including administration on what the Special Education Laws are.  I'm amazed that it is not a requirement for all those working in special education to be educated on the Special Education Laws.  I would like to see reform in the Special Education program that requires all schools and school systems to follow the law without the parents having to be the one to notice and speak up when it's not being done.  There needs to be some checks in place to ensure that all children in special education, regardless of their background, have the educational opportunities according to the law.  Our typical children automatically get this, why should our special needs children be any different. 
  • Sleep.  I never knew how much sleep Andrew and I could go without until this year.  Sleep is something I'm desperately hoping for in the new year for myself and Andrew. 
Through all the struggles of 2011, I am thankful for the knowledge that we have gained thus far in regards to Andrew.  There is power in knowledge whether it allows you to change the situation or not.  Knowledge allows me to be able to better care for him. Sometimes it's the unknown that can be the most difficult.  I hope we gain even more knowledge about his condition.  With so much uncertainty still at hand, I find it hard to give him what he needs.  Just like any other parent, I want to make sure that I have done everything possible to help my son.  When a parent realizes a need their child has, they will do everything they can to provide that for their child.  I'm still trying to find out what all he needs so that I can actively pursue meeting those needs.~~Have a wonderful New Year!

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