"The newsletters came in today!!"

     That was the title of an email I received from our parent consultant on last Monday!  This is the same lady that called me earlier this year and told me that I needed to write an article for the CRS Parent Connection newsletter.  At first I had told her that I wouldn't know what to write, she informed me that she had been reading this very blog!  I couldn't deny that I was in fact, attempting to write!

     Took me a few days, wondering what to write about.  I thought about the audience...Parents, like me, dealing with similar issues, raising our children while trying to maintain our own personal lives and our sanity!  What did I want these parent to hear from someone that may be on a comparable journey?  I thought about Kerstin and how she has and still endures so much on a daily basis.  I knew that there were parents out there that would see this newsletter and they know that their child is loved and gives them the strength they need!

     "You make it look easy!"  That title came to me and I knew I had to go with it.  I have been told countless times, that I make things look easy when it comes to caring for Kerstin.  It only seems that way because I have to do them.  I have to care for her.  I have to be her voice, her legs, her caretaker, her comforter but most importantly, I have to be her sometimes sane MOM.

     I hope to submit another article sometime in the future.  That one was written as encouragement to other parents and to push myself out of a comfort zone.  I am published in a paper that will be read read by parents across the state of Alabama and possibly beyond.  We are on a journey, growing each day, hence, "Growing With Kerstin".  

     If you want a copy of this newsletter, please inbox me on Facebook-Growing With Kerstin.  To get future copies please send your name and address to:

Susan Colburn

Children's Rehabilitation Services

602 S. Lawrence St.

Montgomery, AL 36104

     

Not all moms share the same secrets.

     I recently read an article from 2013, posted by a mom of a child with special needs.  The article was supposedly her list of secrets and titled "6 Secrets Special Needs Moms Know But Won't Tell You".  While I can't help but agree with some of the listed "secrets", some I cannot really relate to or just from a different perspective.  As parents, we all do things our own way and raising our families is one of those things. 

     Mom, Suzanne Perryman, in the article listed her 6 secrets and gave her reasons for them.  Her list went like this:  

1. Special needs moms are lonely
2. Special needs moms have to work extra hard to preserve their marriages
3. Special needs moms are not easily offended
4. Special needs moms worry about dying
5. Special needs moms are fluent in the transforming body language of touch
6. Special needs mom know how to savor the gift of a child saying "I love you"

I like Suzanne's list, and like I stated some I can relate to and some I cannot.  
     "Special needs moms are lonely", I can relate, at times it seems like no one fully understands what you are dealing with.  Taking care of a child who needs you for every single thing, doesn't give much room for other things or a very active social life.  The loneliness is especially harder since my job is with her at her school as her aid.  Sometimes even family tend to go their way socially and leave us in our own world.  Yet, they come back to "talk" about it all.  It may take us longer to get prepared to leave, once we do, it may take longer to load and unload but, we like being on the go.

     "Special needs moms have to work extra hard to preserve their marriages", okay!  I'm a single mother.  Kerstin was diagnosed and her dad walked away!  Yes, I have attempted to work hard to preserve relationships.  Even when love has been expressed to me and my daughter.  I guess when we can't always be on the go like others, it makes it a little bit easier to walk away and pretend we never happened.  That is one thing I cannot and will not continue to do, try to keep someone in our lives when they don't want to be here.

     "Special needs moms are not easily offended". I think that all depends on the emotions, the day and what's being said.  I am very easily offended by ignorance. Do I get offended when people ask questions about Kerstin, her diagnosis, her likes or dislikes?  Not at all.  What offends me are the stares.  The "what's wrong with her?"  Nothing is wrong with her, she's made the way she was intended to be made.  I like when I'm asked questions because you are genuinely concerned.  I think the more I can help someone understand, maybe the less stares she will get.  I am all about educating those we encounter, from the youngest to the oldest. 

     "Special needs moms worry about dying".  This is true.  I must admit that at times I have had very selfish thoughts about death.  I even wrote about Life Expectancy recently.  I often wonder what her life would be like if I passed away "now", before her.  I have even found myself praying that we go at the same time, that way I won't have to live and carry on without her and she wouldn't be without me.  Death is that one thing that is certain for all of us and we don't know when it will happen.  We just have to live each day and love like there is no tomorrow.  

     As far as special needs moms being fluent in touch and body language.  I know I have to be.  My daughter is non-verbal.  I have to notice her behaviors, her facial expressions and all.  She has a language all of her own. 

     "Special needs moms know how to savor the gift of a child saying "I Love You".  Again, Kerstin is non-verbal.  Her smile and those big beautiful tells me that she loves me.  When no one else is talking to me, my little love is a constant!  Feeling her arms around my neck is "I love you" enough for me.  Check out my Facebook update back in May.  It's moments like that, makes all of this worth it.  

     So, we all have secrets, we all have fears and we all deal with them differently!  One thing is for sure, we have to love our children, no matter the need or ability!

In all her tiredness, she enjoyed!

Suzanne Perryman, 2013.  6 Secrets Special Needs Moms Won't Tell You.