From a Parent: Things I Wish I Would Have Known

 If you are a parent of a child with special needs, I have a special resource for you today. 

As it so happens, I (The Speechie Godmother) have a disability myself. I am an identical twin, and my sister and I were born at 27 weeks. We subsequently each have types of cerebral palsy. Being that my mother experienced her share of trials when advocating for myself and my sister, I asked her to write a piece for "The Speechie Godmother" explaining her experience from a parent's perspective. 

You see, I want to help, and I have experience working with special populations. However, my experience can only go so far... I am not a parent. Sometimes, it helps to get advice from someone who has been in the situations we are experiencing and has come out on the other side. 

So, without further ado, please enjoy my mother's opinion piece on parenting and advocating for children with special needs. 

I hope this helps you! 

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Things I Wish I Would Have Known

I am the mother of identical twin daughters who were born at 27 weeks gestation.  Both have Cerebral Palsy.  The oldest one has the more serious condition. She has Spastic Quadriplegia Dystonia.  This is a result of a brain bleed when she was born.  At the time, this was the most common hazard of premature birth.  The doctors told me that it was more unusual that the younger one didn’t have one.  

 

My doctors told me that because we were dealing with the brain, they couldn’t tell me WHAT to expect.  All they could tell me was that they had never seen this type of bleed cause intellectual development.  They were correct.  My daughter has the physical capabilities of an approximately 4- to 6-month-old.  She uses a wheelchair for mobility and wears briefs for incontinence.  Today she lives in an Independent Support Living home that she shares with another young woman who also uses a wheelchair.  They have staff personnel 24/7.

 

I was one of the lucky ones. Due to being born at Barnes-Jewish hospital, I received considerable direction in finding early intervention services.  It wasn’t until the time came for my daughter to enter the public school system that I encountered issues.  I will always remember the Director of Special Ed telling me “we’ve never had a child like her before”. To which I replied, “well, you’ve got one now so what do we need to do?”  Since I had access to early intervention services, I knew what the school could and couldn’t do so we worked together to form a plan to help her be as successful in school as possible.

 

I would like to tell you it was easy, but I would be lying.  I still encountered resistance at them having to accommodate her.  Unfortunately, I had to attend a school board meeting due to resistance.  I politely, but firmly, told them that if they thought she was the only special needs child they were ever going to encounter, they were very mistaken!  It was after I quoted them law (by section and sub-section) that they realized I was serious about my daughter’s education.  I am proud to say that both my daughters did well in school to the point that my younger daughter graduated third in her class and the older one was thirteenth.  

 

The best advice I can give new parents is do not be deterred.  You know your child better than anyone, so you are the best advocate they have.  When dealing with the school, be open but don’t let them blindside you or bully you.  If you feel that you are in the right and have information to back you up, stand firm.  The most important thing I can tell new parents is to always use language that lets the other party know you are open to cooperation.  Use words like we and us.  Refrain from using words like I or you.  One word you will not hear me use is “normal”.  I prefer the term typical because normal is highly overrated and usually not definitive for the situation.  If you feel that you child is not getting the services they need to succeed, don’t hesitate to ask for them.  All they can say is “no”.  

 

I cannot stress the importance of research. One type is on the law and the obligation that schools and other facilities are required to provide.  The other is any type of parent organization that can help you become acquainted with people like you who can offer support and guidance.  When in doubt, talk to your child’s doctors.  More often than not, they can provide you with valuable information. Once again, I tell you that your are the best advocate for your child.  Do whatever you feel is in their best interest.  It probably won’t be easy, but every child deserves a chance to learn and become a valuable part of society.  Mine have done this very thing and I believe that yours will also.