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Thursday, September 10, 2009

he's just like everyone else... all he wants is to be loved!

For many of you who come here to read my blog, then you know I have mentioned in the past that my son has CP (Cerebral Palsy) and other disabilities.  Gosh I hate that word and yet I was still using it.

Well today I'm here to stand up and say...  

"Hi my name is JP Shaw and I'm the mother of a child with special needs!"


Okay that wasn't as easy as it looks printed on the screen before you.  I don't know what it is but for the past three years, since we've known that Pickleboy was different somehow all I've done is focus on fixing him.

PB started preschool on Tuesday and I have to take him back tomorrow.  I don't want to but know I have to.  He needs to go.  He needs to thrive and make friends.  But that isn't even what is really bothering me today.  What is bothering me most is that all this time ... after all the doctors and hospital visits and appointments with neurologists, specialists, child development and so forth...

I still feel like I have to fight to explain YES MY CHILD IS SPECIAL NEEDS!!!!!

You know sometimes even I convince myself that he's fine.  He is normal.  He is healthy.  He is smart.  He speaks.  There is absolutely nothing wrong with him.  Right?

Well for the most part, yes that is true.

PB's CP is very mild.  In fact most people (except experts and doctors) can see it.  When he gets tired he will lose his legs.  By losing them I mean he falls -- A LOT!  He stumbles, has no balance, cries every night because they hurt.  His legs just cannot function when his brain is overrun or overwrought with stress.  He is not your typical case of CP.

Mind you there is nothing typical about PB.

PB also has Asperger's.  He has yet to be diagnosed because he's too young, but us and the experts are certain he is an Aspie kid.  He is the type of child who needs structure and predicability and without those things LOOK OUT! because again he cannot function properly.

He will bite.  He will hit.  He will scream.  He will run.  He will swear and run away and bang his head on something or bang into you.  He's three and if he is unaware of what or where he's going all the time.  It just doesn't work for him.

PB is just like everyone else... all he wants is to be loved.  It's loving him though that can be a struggle in itself.  I had no idea how hard it would be to get hugs or kisses or I love you's from your very own child.  How sometimes he just isn't here.  He's off somewhere in his world unaware of feelings or emotions.  How sometimes his lack of understanding makes him appear like a very spoiled and rotten child, when indeed it's the opposite.

I'm always on GUARD!

I cried a lot tonight after all the boys were bed.  I was hanging out at twittermoms, scrolling through groups and reading about other moms who have special needs children and thought to myself... that's not me.  Then it hit me.

YES YES... it is.

I'm the mom of a special needs child who has special abilities and although he appears as normal as can be (to others) most of the time, he's not and I have to accept that and accept him and love him for everything he is.

So why am I so afraid?

Because I don't want him to be different.  I know selfish, eh?  He didn't sit up on his own until after he was one.  No biggie he overcame that.  He didn't talk well or even walk until he was two.  Again he moved mountains and has come so far so fast.  He's going to be fine.  Right?

Well of course he's going to be fine.  But when I'm standing in Walmart and he's screaming, biting and hitting and freaking out because of an overload to his senses and his ability to deal with so many people and so much noise, and then he collapses in my arms, vacant and drained and says... "I'm sorry mama."

I want to SCREAM!

He is different.  He's mine and he's different and that's okay.  Maybe he shows he doesn't care but he does.  I know he does.  I know he's there inside and I can see him.  And he is going to be fine.  We are going to be fine.  We just have to get through these days and nights, one day at a time.

Still this road is paved with stones my feet have never felt before.  I'm depressed and sad inside lately and trying to cope.  But I think joining these groups on twittermoms is going to help.  At least I hope it does.

"No  place is worth visiting if you have to take a shortcut to get there..."


Vicki on September 10, 2009 at 8:39 AM said...

Big big {HUGS}JP. I follow so many of your family's blogs, and I know you are such a strong, brave, wonderfully loving woman! You deal with so much that I can't even imagine, just trying to piece it all together from different blogs mind-boggles me!In my opinion, you are truly the hero of your family and an inspiration to all of us other Mom's. I wish I had words of advice, but I don't. Just know you are appreciated!

Kim said...

What a great post honey! I know it's not easy but it will get easier.

Lynette said...

What a lovely picture of your blond little boy - sweet and happy. I know it belies the struggles and tears, screaming and biting in Walmart. No child is sweet and compliant all the time - no adult is, either. And it sounds like you've surely been having more of your share of challenging moments while devoting yourself to loving and caring for your child with special needs. It sounds like you've come such a long way with his learning so many things so far - to sit up, to talk, and more. I know the road ahead looks long, and difficult too. Take comfort in the small accomplishments and gifts. Know also that even if the other Walmart shoppers don't look so sympathetic - there are a lot of us out here who are!

Recent blog:=- Review by Tech Talk for Moms

JP Shaw said...

Thanks Lynette for your kind words about my son. You are right focusing on the good things is easier than focusing on the behavior. Thanks for stopping by and for emailing me about the tech troubles with my comment luv.

corey shaw said...

hey babe he knows you love him and you are an amazing mother! He's lucky to have you and you just have to be strong and each day will get easier.

Guest said...

It is sooooo easy to tell yourself there's nothing wrong, I know. JP you are my very best friend and PB is a strong boy who isn't going to let all these little obstacles keep him from being a great man who goes on to do great things. I face the same issues with my baby girl too, everyone telling me constantly nothings wrong, or I'm imagining things. The thing is though we are moms and we know. We know. What a blessing it is that we have each other to go through all of this with. Right next door is an other mom with a child with special needs that has also gone through all of the medical crap and is still dealing with it. Hugs to you!

Recent blog:=- Mothers Week aka back to school

Karen Griffith Gryga on September 16, 2009 at 12:16 PM said...


You are not alone in your struggles or your feelings. It IS hard day to day. We worry and we struggle. Our kids will be okay because we love them and we fight for them.

I just did a post "What I Would Want a Mother of a Typical Needs Child to Know". It was really difficult to answer but it might help in letting you know you are not alone.

Hang in there.


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