Soul on Fire







Happy Autism Awareness Day!

It is kind of funny to think that there is one day to celebrate Autism Awareness because the saying is so true that to families with children on the spectrum we really need people to be aware everyday.  It does bring much joy to me to see all the buildings light up in blue.  Joy knowing there are people that understand and care because there are lots of other days that this does not show up.

It has been a tough go around here lately.  While we have one diagnosed with Asperger’s and he has his moments all in all he is a very bright kid who has gone leaps and bounds with his therapy.  If you walked into his classroom you would not likely notice his challenges.  He has a 504 but as I brought up to the school last week; they have not even been meeting his simple accommodations for the last three years.  He is a self-advocate and I am so proud of him everyday.

His younger brother has quite a different story.  He has not gotten the Autism diagnosis because he managed to play nicely with toys he loved for an hour with the specialist’s student.  Wow!  That does not tell me much…lets try something he does not want to do…that is a different story!  So his only diagnosis is expressive language disorder which the school completely dismisses and told us last week after fighting for a 504 or IEP that they would never service him even if he got the diagnosis because he is too smart!!!

I literally have a little Einstein that is behind in all academic areas that builds rocket ships for fun who can’t get a public education because he is “too smart.”  The school tried to dismiss his complaints that the teacher had thrown his work in the garbage (I’m guessing it had some building design on it instead of the work it was suppose to have), ripped his headphones off, and pushed him into the bus line as he was not able to express properly.   After this he refused to go to school, who would want too?  So we started our homeschool venture in hopes that we could get an education plan in the future and send him back.

So why is my soul on fire?  It is on fire for the broken systems that we are living within.  I am sitting here writing this today because I was suppose to be in Jury Duty so I had to send my little side kick out of town with his father on a job so I could serve my Jury Duty.  It was a real struggle for me not because I mind Jury Duty but because I was told I had to at the same time as our local school district is failing to follow the laws that they have too.  It is not just the DHS system we have served the last year that is broken…it is the whole system.  My soul is on fire for all the brokenness.

Special Sleep

Finally, I have time to write.  I guess that brings up the topic of sleep with a special needs child or children.

The first week of school it was great no one to interrupt him and he was taking four-hour naps and off to bed with brother and sister.  Then it was no naps, just some quiet play time as was a house rule through Kindergarten (aka. Mommy sanity time).  Now we have kind of adjusted to the nap every couple of days.

Last week he had a great nap…I madly tried to catch up on everything that needed to be done.  Then came bed time.  No such luck.  Then came Mommy’s bed time.  No such luck.  Then came Daddy’s bed time…you HAVE to go to sleep now!  I guess for the most part I have been fairly lucky when it comes to naps and night-time with my kids.  I have heard many stories of kids on the spectrum that plan just don’t sleep.

I feel very blessed in fact as a baby I was on the spoiled side with my middle.  He took horrible naps maybe 20 min max and usually it was in the sling while I would work on the computer (I kinda miss that…I loved the snuggle sleeping baby stage!).  Come seven o’clock he was out…tuck him in bed and  kiss him good night.  We did not see him until the morning and if he missed bed time he would not be too happy with you he wanted to go to bed.  For the most part he has always slept well.  As he got a little older he would wake up at 3:30, I guess there is something magical about that time because I don’t even need to look at the clock if he is awake it is 3:30.  His neurologist recommended Melatonin and it works great for him!

Our third child’s sleep I believe is a little closer to the typical spectrum child sleep.  Completely Random!  At one he would finally sleep through the night on most nights.  Unless he had a bad dream, needed water, or it sometimes felt like whatever excuse he could come up with to not sleep.  Although, I have to admit once we controlled some dietary issues I truly do think he had a valid tummy ache on lots of nights because the sleeping is much better when he is on his strict whole foods diet.

I guess this is it for today.  I really thought that nap was gonna happen but I am hearing the “MOM” you can’t make me sleep voice.  “MOM” I know you are there “MOM”!  I guess I don’t have a lot of advice for this topic but just know you are not alone in the middle of the night adventures.