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!

Well Child Visit....

This is what most of us would call a yearly check-up with our child's primary doctor.  As a special needs mother I dread these visits with Andrew.  We recently had one a few weeks ago.  I am very aware of Andrew's delays and where he is in comparison with his typical peers.  I have worked really hard not to dwell on those things and not compare him to other children.  I just focus on him and his progress or lack of.  However, the receptionist handed me a form to fill out in regards to his development.  It was only a series of questions and you simply answer yes or no whether or not your child can do what they are asking.  Then, under each group of questions, it asks you if you have any concerns regarding your child's development in this area. 

This was very hard for me.  As I was going through the questions and marking the answers I wanted to sit there and just cry.  I couldn't answer a single yes to any questions at all, except for when it asked, "Do you have any concerns regarding your child's development in this area?"  I wonder what they would have thought if I had answered no after marking no on all of the other questions.  He wasn't doing anything a four year old should be doing in any area of development.  This isn't something I didn't already know, I just try not to think about it that often.  When you actually see it on paper staring at you, it brings you back to reality that your life and your child's is far from typical.  We don't share in the same activities as most parents do with a typical four year old.  Andrew is over 60% delayed in most areas and 75% delayed in communication.  He can't pedal a tricycle or maneuver a ride on toy, no coloring, no pretending, no running or jumping, no back and forth play with toys (he prefers to play alone with the few that he plays with), and the inability to put his arms around me for a hug.  Don't get me wrong I love the cuddling he does, tickling him to hear his sweet laugh, the big beautiful smile he gives just by simply looking up at me, the fact that he would prefer to just sit with me all day, and how he gets excited over the little things.  However, I still miss all the things that parents get to do with their typical children.  I usually don't focus on those things, but this particular moment brought it all back to me while answering those questions. 

It would be nice for parents like me if they would flag his chart so that we are not asked to fill out these forms regarding development.  I understand that these are needed so that a problem with development can be caught as early as possible.  They just aren't necessary in a situation like ours.  They are already completely aware of Andrew's development.  If they only knew how hard this is for a special needs parent in a situation such as this.

The visit with the pediatrician wasn't quite as bad, except there wasn't really anything positive discussed.  It was about therapies, muscle weakness, curved tibias, seizures, sleep issues, behaviours, allergies, medications, very brief discussion on development, and what the next step was.  Nothing 'good' was discussed, just the necessary.  I could tell you many wonderful things about Andrew but they don't have time to listen to any of that once you've discussed all the issues that he faces.  These are all necessary things that have to be done for his care, but it is still difficult.

I remember with my daughter being able to be proud of the development she was making and being able to confidently say, "Yes, she's been doing that!"  They were visits to look forward to, except for dealing with the ones where she received immunizations.  The discussions with the pediatrician were always positive with many positive comments.  How I miss these yearly check-ups.

I put on my usual front when the pediatrician came in the room.  I never showed any of my true feelings over the situation.  I have a tendency to hide my feelings.  I appeared to have it all together, unless she's good at seeing through people. As we left, I had Andrew waving to everyone while I was smiling, yet crying on the inside.  Maybe I just don't want anyone to realize how weak I really am.

Others tell me "You're doing such a wonderful job.  Well, I don't think I'm doing anything that most Mothers wouldn't do for their child if they were faced with the same situation.  Some tell me,  "I don't know how you do it!"  Well guess what, most of the time I don't really know how I do it either, and many times I don't feel like I'm doing it like I should.  And I'm doing it just like you would if you were faced with the situation.  I love Andrew just the same as a typical mother, it just requires more out of me to be his mother.  Being a special needs mother doesn't make me extraordinary in any way, just different.  

Andrew can hear...

As I was thinking back on our Christmas gatherings I can't help but think about them through Andrew's eyes.  We were attending one small gathering of just extended 'immediate' family and I can't help but think of how Andrew was treated so differently from the other neurotypical grandchildren in the family.  Andrew was referred to in the third person.  One family member kept telling me, "He's so cute.  He's so sweet," all while he was right beside of me. All the while Andrew was smiling at her and playing peek a boo around my shoulder to get her attention.  He was never acknowledged.  They could have reciprocated with a smile back to him and could have said, "YOU'RE so sweet and cute,"  or even played the little game back to him, then they would've have received a cute laughter from him.    Instead, they chose to just speak to me and referred to him as if he couldn't even hear.   Just because he can't speak back to you in words doesn't mean he can't hear and doesn't know what's going on. 

He was never talked to about Christmas like the other children.  Joy was not shared with him in laughter like the other children.  It was almost like he wasn't there or they were afraid they might catch something from him.  He loves to cuddle, has a beautiful smile, a laugh that would bring joy to anyone, and enjoys the excitement of others.  He was never touched (except by me), given any type of affection, or spoken to by other family.  He was never met with, "Hey, Andrew; How are you doing?  Are you excited about Christmas?"  As I met each family member he was never addressed nor did they even ask me how he was doing.  This behavior continued the entire visit.

 I went and stayed out of obligation.  Unless things drastically change over the next year, I don't think we will be attending next year's gathering.  It is not fair to put Andrew in this environment and allow him to be treated this way.  He is not less of a person than anyone else.  Andrew and I did leave a little early because he was tired.  However, he was awake when we left and as I was trying to be nice and tell everyone "bye" and had Andrew attempt the same, no one spoke to him directly other than "bye."  If it had been one of the other children, they would have said things like, "Go get some sleep, Santa comes tonight!" or even, "I hope Santa is good to you."  Nothing along these lines were ever uttered to Andrew.  I don't know if they are thinking, "Well he can't speak to me, so I'm not talking to him."  He didn't even receive a rub or pat on the back.  Andrew can hear, has a desire for affection, and has feelings too.

 I'm sure he couldn't wait to get out of there.  At one point he was upset due to all of the commotion going on in a small room.  I walked out of the room with him and he was reaching for the door.  I picked him up and he was actually reaching towards our car and fussing.  I can't help but wonder if he was trying to tell me that he wanted to leave.  I felt the same way.  I know if I felt like an unwelcome outsider, I can imagine how he must have felt.