Wednesday, February 15, 2012

Dyspraxia

I feel kinda numb right now.  You know that moment, when you think you know something already and you tell yourself...I can totally deal with this.  But when a doctor tells you it...it hits you totally differently than you anticipated   Almost foreign and kinda like a ton of bricks.  I don't know why that is.  I have a horrible headache and I keep crying.  I just keep thinking of my sweet little guys face and knowing he's going to have some obstacles in his life.  Today, I took my oldest son to the doctor.  My husband and I spoke with the doctor privately and then the doctor evaluated Spen.  He's pretty sure he has dyspraxia.

http://www.dyspraxiafoundation.org.uk/services/gu_introduction.php

 He scheduled an evaluation from an occupational therapist and a neurologist.  It just sucks.  I know there are so many worse disorders and things that could be wrong, but as a mother you never want anything to be wrong with your baby.  It just sucks.  A week or so ago it hit me Spen was having issues.  Spencer has always been clumsy.  As an infant he had PT and OT due to torticollis.  He also was legally blind in one eye.  Thankfully, we caught it early and his eyesight has improved drastically with patching and wearing glasses.  About two years ago I took Spen to the doctor because he kept falling down while playing soccer.  The doctor said it was his allergies and depth of field issues that caused it.  Spen has fell from the moment he learned to walk and even before then.  He had an MRI as a infant due to his eye issues and had been cleared from other worries.  So Spen informed me he could not jump rope in P. E..  He said he kept falling and he showed me his knees.  They were covered in bruises.  My mommy gut knew something wasn't right.  I googled some things about clumsy 8 year old and the term dyspraxia popped up.  As I read all the symptoms my jaw dropped.  My little guy had almost every single one.  Then my mind did that weird little dance of plugging in EVERYTHING that has occurred in his life and I swear it was like DUH.  This has been his problem all along.  I called my husband and he too looked up all the symptoms and did as much research as we could. We are about  100% sure this is what he has.  His doctor is too.  Now it's just getting him officially diagnosed. I have no idea what this will entail.  What tests will be run and what therapy will be set into action.  I'm just ready to get started.  I swear this whole motherhood/ being a parent thing is stressful and an emotional roller coaster.  I can honestly say I have the best partner by my side.  Screaming, crying going up the hills and coming down them...he's by my side all the way either laughing with me or wiping away my tears.  But nonetheless...he's there holding my hand.  Spencer is a special kid too.  He's smart, imaginative and is my smiling little prince.  He's the sweetest kid with the biggest heart and best smile.  He's strong and has the best attitude about this all.  He'll be just fine : )












Ok...this momma needs some rest and chocolate asap.  I think I'll go rummage through Spen's Valentine loot. 

8 comments:

Hot Mama said...

What a beautiful boy you have. You know, in your heart, that he will be fine, and that trusting your heart will be what helps you through this. I'm so glad you have gotten on the path to full diagnosis and treatment. You're a good mom, and you got him to the doctor when your gut told you to. He is very lucky to have a great mom, and advocate, on his side.

~Nikki Pullen said...

Thanks I needed to hear that today!!!

Michele Gianetti said...

Hi, I read your posts and I need to say that your child is absolutely beautiful. I wish you the best of luck in getting him his treatments. My daughter has dyspraxia and SPD. Her dyspraxia is global meaning it affects her gross motor, fine motor, oral motor and her thinking. She was diagnosed at 2 years old. She is 14and has achieved some amazing things. Just follow your heart and listen to that inner voice. I tell our story in the book I wrote about her called I Believe In You: A Mother and Daughter's Special Journey. I wrote it to tell our story, give hope to others and as a tribute to her.

~Nikki Pullen said...

Thanks! He's a cutie and a sweetie to us too : ) That's wonderful for your daughter and I will definitely have to check your book out! Thanks again!!!

Juliet said...

I've been there, and am still there. It's tough, but you'll be glad of the diagnosis later. It makes it easier to adapt school and life for him and if he's anything like my son those challenges can also open up a lot of talents and character strengths.

There are "normal" people with dyspraxia. Daniel Radcliffe, the Harry Potter actor, suffers from it. So that might help you feel better. A few tips from someone who got her kid through elementary school:

First and foremost find some kind of organized physical activity that he's willing to stick with and make sure he does. Notice I say "willing". It can be hard for kids with dyspraxia to swallow the reality that they progress more slowly than other kids. But it's really, really important that they stay fit and keep working on their co-ordination, and don't drop out of activities too frequently. My son started with swimming. He also spent some time in a specialized activity group for kids with LDs. Eventually he moved on to tae kwon do, and now he's got the confidence to be on his school handball team. There were a lot of times he wanted to quit, but we kept to a rule that he could quit at the end of a session, or after getting a belt, etc. No quitting in the middle. The body confidence he has gradually developed has been worth the saturday morning bickering.

tip 2. Find a good, saavy OT who can help you negotiate with the school. If he's having handwriting and drawing problems (this is probably affecting find motor skills too), start educating yourself on educational technology now and figuring out how to . Handwriting With Tears can help him master the basics, but don't waste too much time avoiding the inevitability of a portable computer and software that is easy for both him and the teacher to adapt. The earlier that becomes natural, for him, and the school, the better.

And finally, everybody's dyspraxia is different. So if those tips aren't right for you, feel free to disregard them. Everybody is going to have a different plan of action. Go with your gut on what is right for your child. And stay as cool and relaxed about it as you can. This is going to be a challenge for everyone involved, parents, teachers, other kids. So keep your sense of humor. You'll need it.

On the tremendous plus side, you're about to set out on an adventure where you will learn so much about not only your son's brain, but your own. And that can be scary and disorienting, but also really rewarding.

~Nikki Pullen said...

Thanks Juliet for such kind and inspiring words!!! I told my son about Daniel Radcliffe and he was shocked and excited. I hate the whole waiting game on getting a diagnosis. Next week we have an evaluation with an OT and next month with a neurologist. The sports things is our toughest battle (along with writing..hehee) He has done swimming and liked it. He's eager to start back with swim lessons. We have thought about karate or some sort of martial arts. As for the writing aspect...sheeshhhh...I witnessed my mother go through this with my little brother who is dyslexic. Thankfully, Spencer is a good writer...just ssllllllloooooowwwwwwwww. It could take all night to do a writing assignment. I spoke with his teacher and she was awesome. So we are making some short cuts with homework. We also talked about getting him a laptop or ipad. Thankfully, my son is a computer whiz. So that might help him out. Thanks again for the insight and kind words!!! This momma needs it right now. I think my biggest concern is just him getting his feelings hurt. EVERY MOTHERS fear. He's a SUPER sensitive kid. He's smart though and very laid back along with being logical. But kids can be mean and that is what scares me. Luckily, he's been going to the same school since preschool and has a good set of friends. I just hate that this is the age where the sport stars are taking off and my little guy can barely stand on one foot. Heh...tis life. This is when creativity is born and outside of the box thinking comes in : ) Thanks again!

mrfried said...

Hi Nikki I work with Michelle and live with Dyspraxia. I run the Dyspraxia Foundation in the States (www.dyspraxiausa.org) and would be very happy to chat to you regarding the condition,

Warren.

mrfried said...

Please feel to contact me at warren@dyspraxiausa.org I run the Foundation in the States and more than happy to provide guidance to your family. I have lived with Dyspraxia for over 30 years.