Wednesday, September 28, 2011

The Importance of Being Your Child's Advocate

I have recently joined and awesome network called MyAutismTeam.  You can visit yourself if you'd like at www.myautismteam.com and if you have a child with Autism or an Autism Spectrum Disorder I encourage you to visit it and meet other parents struggling the same way you are struggling.
One parent asked a good question -about what we had learned about being involved with our children and what had helped us.  So I figured it's time to write a long overdue blog.  So here it is.  It is vital for your child that you be their voice.  This is more important when they are younger than when they are older sometimes, but I found that being an advocate is vital to helping your child.  This doesn't just encompass your child with special needs, but when your child is ill as well.

Why?  Often when children are young they do not know how to express themselves.  If you are anything like me, you know what your child needs before they need it.  BTW, that sometimes doesn't help them, it's important for them to learn how communicate.   Elizabeth was younger she didn't speak a lot.  She spoke, but most of it was jargon or her own language.  One of the things I figured out quickly was that while the so called "experts" new a lot, they didn't know my daughter.  I found that they often didn't think of all the angles when it came to Elizabeth because while they knew the general information about special needs, they didn't know these facts as they pertained to my daughter.  I found myself at odds with a few specialists who wished to medicate a four year old child who was very small for her age.  I might not have gotten so testy but they acted as if medication was the only option.  I had been prepared for this so I began researching medication and realized quickly that Elizabeth was far too small to take most of those medicines and that they could have serious health risks - something those "experts" probably didn't know because none of them were doctors in medicine or pediatrics.

How did I help Elizabeth?  First, I spent time praying for wisdom and guidance from the Lord.  I asked his guidance in choosing a good magnet school (preferably with smaller classrooms) for Lizzie.  I asked him to help us when we realized what we were facing.  Second, I made sure that the school had all of the information they needed when it came to Elizabeth's home life, diagnosis, things I'd observed at home.  Third, I often dropped by for "surprise" inspections or visits.  I found that if I slipped in quietly that I got a more accurate gauge of what was really happening in the classroom.  At Spaght, they liked and welcomed that - not so much at Madison.  They said they welcomed it, but when I would stop by unexpectedly it always seemed as if I was a pain, or they wished I wouldn't come and surprise them.  The point in doing this though was to give me a true idea of what happened during the day (I also stopped by at different times of the days to keep them on their toes) and to see how well Elizabeth was adjusting to a change in teacher, classroom, new students, etc. . .  This established early on, that 1. I wasn't just a parent who saw school as free child care.  2. I would be watching.  3.  I cared, and would ask questions and also answer them when they had some questions for me.  Fourth, I made it a point to answer questions, offer any help and offered to back them up when they needed to discipline Elizabeth.  I have a two for one special at my house - if you get in trouble at school you are in trouble when you get home.  It established that I was there to be their partner, not just some schlub who needed free babysitting.

What is very important to help you in your journey?  A good special needs team is very important.  I know with every fiber of my being that Mrs. Silveous, Mrs. Holle, & Mr. George as well as Mr. Wade (second year Kindergarten teacher), Mrs. Hall, Mrs. Parker and Mrs. Baker (her regular classroom teachers) that Elizabeth would not be where she is if not for them.

Why is being an advocate important?  Often times children (special needs and non-special needs) cannot express themselves or explain what is going on with them.  Sometimes your child is too afraid to stand up for themselves.  Sometimes, they are unconscious and lying in a hospital - a voice is needed.  My mom was that voice for my brother after he and our sister and grandmother were in a terrible accident.  My mom is one of the most non-confrontational people I've ever met, but she went to war for my brother when the doctors attempted to give up on him.  Let me tell you sometimes there is nothing a doctor fears more than a woman fighting for her child.  And in the process of fighting for your child, it helps cement your bond with them, your love for them in their minds (providing they know you are in there fighting for them -sometimes it is also important to move behind the scenes so they don't know).  It also helps you remember what is important.
Elizabeth is much more verbal these days, but being only 10 years old doesn't have the life experience I do or the experience fighting the system on her behalf.  As she matures and grows more responsible it will be important that I allow her fight more and more of her own battles, but when it comes to her education that time hasn't come yet.

I also learned a few things about myself.  I learned that while I will go to war for my children, I tend to hesitate more when I have to fight for myself.  Of course, I also tend to eat healthier for my children than I do for myself these days as well.  I've learned there is a fine line between losing ones temper and saying the thing that needs to be said to address an elephant in the room. And that it is important to address the problem at hand before you lose your temper or there is a whole other elephant in the room.
I also learned it is very important to keep the school, your pediatrician, specialists and everyone in the loop as to any changes going on in your home.  This was very important when we faced Chris' second deployment in 2009-2010.  I knew months in advance so we were able to sit down and create a plan to help Elizabeth deal with missing her Daddy, deal with the higher stress level at home, and to help her cope in school.  There was definitely a difference in how well she coped or didn't cope at times, but because we all knew what was going on and were all on the same page, it helped us all to help Elizabeth.  

I hope this blog helped a bit.  I hope it helped answer some questions if you are starting your journey with Autism or ASD.  One last lesson - I learned that a good support system is crucial to making it on this journey.  A good support system will help you see the humor in the daily things and help you when your heart is breaking for your child.
Love in Christ,
Maureen

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