Some small hurdles....

This never posted from months ago...

I have two Mommy problems right now.  The first one is that my means of relaxation and unwinding everyday....  My bath... Is leaking right now.  The kids tubs aren't the same because I can't set up my phone and listen to "mindfulness" books while I relax.  Combine that with our cranial sacral therapist deciding not to take our medical insurance anymore... Right after I just got done paying our deductible and you have an "off" mommy.  You never realize how good something works until it broken.  

I knew cranial sacral was helping Sydney but I had no idea how much until it was taken away for 7 weeks.  Sydney has regressed back to behaviors I haven't seen in a year a half.  And it is hard on everyone! No clothes are comfortable anymore, no shoes, no socks.... Can't wear ponytails in her hair, I can't touch her food or else she won't eat it.  She won't hold my hand or let her body touch any part of me that is bare because she thinks my freckles hurt her.  She constantly talks and repeats herself all day.... Sounds like a broken record. She completely lacks independence and needs help with going to bathroom, getting shoes on that she will just kick off, getting a drink for herself, etc.  I feel so bad for her that I can't relate to any of that.  Whenever I try to be creative or I try to desensitize her, it somehow backfires on me.  

This too will pass.  I know everything happens for a reason and I am so thankful that I have my little Syd.  She is so special and has super powers.  But truthfully, I feel like I am failing because I am letting it get to me.  I know better how to deal with this... I have before... Better than I am now.  I feel defeated!

On top of all this, I can't get any support from the school.  I have tried 3 times .  Sensory processing disorder isn't a real disorder to the schools.  How can that be when she can hardly function as a human being? I will retest her next year after the teacher has worked with her and understands what I see as her Mom.

I was doing some reading tonight to get some support for myself.  I like to know that there are other Mommies out there like me dealing with the same things I am.

Anyway, here is this letter I found that explains everything I feel that some other Mommy wrote on sensorymomsecrets.com.  It is so beautifully written! 

Dear friends and family who don’t know that my child has special needs,

Special needs?  Are you surprised?  Yes, not every disability is visible.

I know you won’t really understand why we chose not to tell you, but it was our choice. A big part of that choice is because people don’t usually understand different. You see, our daughter processes the world differently. She has Sensory Processing Disorder.

Sometimes the environment actually hurts her. Clothing is really a challenge, that’s why in the middle of winter when it’s 20 below she wears a short sleeved t-shirt because long sleeve shirts feel painful on her skin. And if you wonder if she’s cold, she isn’t her body doesn’t recognize and regulate temperature typically. That’s called interoception and interoception has made a real mess of our family life. It makes her have a really hard time sleeping and recognizing when she is fullness when she eats.

I know you try to relate to me waking up at 2 am with her, but you don’t really get it. You see we’ve had very little sleep in 5 years, you’ve missed the absolutely nightmare it is trying to get her to fall asleep. What you don’t see is her little body not being able to be still. You don’t hear her crying that she is so tired but that it is just too hard to fall asleep. Her body won’t settle down.

I know when you see my child you might just think she is wild as she is constantly moving. It’s called Sensory Seeking. It’s her body trying to find her space in the world. Her body doesn’t register her muscles or movement like yours. Her body is searching to find something that makes it feel right. So she moves constantly and it doesn’t stop…EVER.

I see those looks you give me when you think I need to get my child to behave differently. That I need to discipline differently. Or that I’m weak. What you don’t know is that we’ve spent thousands on therapy and frankly, the many therapists we’ve seen think we are doing an incredible job. The thing is that when you have a child that processes the world differently, she’s doing her best to hold it all together but she can only hold it in for so long.

Most of all, I know that when everyone is talking you might think that I have a rude child who randomly chimes in with sentences that don’t make sense. And that she also constantly interrupts people. I know that you might think this really annoying. What you don’t know is that, we are trying so hard to work on that and that it breaks my heart that it is so hard for her that she doesn’t even recognize that a conversation is going on. Can you imagine what that would be like?

More than anything I wish you would know how absolutely broken I am as a Mom. I wish I could have your support. I need it more than anything. I’m exhausted from not getting sleep. I’m burned out from the never ending therapy we have to do at home and traveling to see so many therapists. And my heart hurts because it’s so hard for my daughter to function typically.

This isn’t something that she will grow out of.

But, I’ve put everything I have into helping her to cope with it, it’s my life. All of it.

Proud Mama of a third grader

Luke had his second track meet today and people who had been to many said it was the worst in terms of organization. Poor Luke wasn't ready for the gun shot at his 50 yard dash event and then they messed up his heat in the relay and he had no one to hand the baton to. They grabbed him from the deck to run not realizing it was the wrong heat.  I am proud because he handled it so well, went with the flow and didn't get all bent out of shape about it.  I know he was frustrated too!  My boy has come so far!  A year ago there is no way I could of paid him enough money to be in track.  Not only that but it is after a long day of school, and there is such a large crowd that it is completely sensory overload.

He is such a great role model the 4 of us!  He has the best sportsmanship of any kid I know.  He wants to do his best but doesn't give up on himself when he doesn't win the race. He takes it all in stride. The way he deals with the ambiguity of being at new track fields with tons of kids he has never met is admirable too. He doesn't freak out about not knowing logistics... He just moves right along!  

My advice to him is to never give up!  He may not be the fastest but if he truly likes to run and wants to be the fastest some day, there is no way he can't get there.  He just has to want it.  I feel like he knows this about himself. If he decides he wants to spend his time working on something else... Well that is just fine too! Both Daddy and I support whatever he decides he wants to excel in!

After the meet, we went to his spring concert that made my heart feel warm.  I had no idea what to expect so to see him smash dab in the middle of the crowd singing in a very animated way... Made me smile ear to ear.  His motor coordination with the ribbon stick and music sticks was just awesome!  I was so proud of him!  

Track meet #1

Luke did such a great job at his track meet.  He got a ribbon... Third place!  I was so impressed with his focus!  He said he was pretending he was a car in one of his favorite games... Nitro type! 

First track meet tomorrow

Tomorrow is Luke's first track meet!!  I am excited, nervous and proud! I have mommy jitters!  He is running the 50 and 75 yard dash, doing the triple jump and long jump!  More to come tomorrow. Here he is in his new Jersey!