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.

My Heart

I titled this my heart because my heart is what aches after this morning’s mad rush to get the Valentine’s done for the Kindergartener that had to be done today.  No help from the colored printer that decided today was the morning to not work.  We got them done quickly; it was a family event and I guess it was a good thing they did not need the students names.  Although, I feel Valentine’s without names is one step closer to loosing social connections kids need it was not the sting of the morning.

Yesterday I got the first phone call home from school.  Well I guess it was technically the second.  The first time he got in trouble for kissing.  I guess at least it was not hurting someone although I found it highly ironic that the phone call was as if he had hurt someone and the phone calls don’t come when kids get physically injured at school.  This time he had “assisted” a little girl down the fireman pole.  Yes, the same one he reportedly JUMPED off of last week sustained injury and no phone call home.  I’m sure he tried to reason with her and asked her to move or take her turn but the fear had her…he thought he was just helping her down.  So we tried to explain that it was not helpful and that he needed to wait his turn patiently next time.  It is Kinder that happens and she did not get hurt and he had his timeout at school.  Moving on.

Then the second part of the phone call.  He has been making animal noises and other noises and distracting the class.  No not my kid, annoying, all be.  My rebuttal is well that is a sensory seeking he is probably bothered by the noise in the class and the rain that has been pounding on the roof for days now.  “Well I need you to talk to him.”  I’m sure that will solve all the problems, right.  My magical super mom powers will make the noises stop just like it does at home, lol.  He has OT next week, hopefully that will help.  Well he is apparently the ONLY one in the classroom that is being distracting and making noises, everyone else was quiet.

I just have got to laugh of course to keep myself from crying.  I had no idea my kid had the potential to be annoying and not stop when asked.  I had no idea this was coming…hence my asking for an IEP before school started.  My inner voice is only cheering slightly as my outer self says, I told you so.  Maybe now that it is annoying to you we can move forward with my son’s educational needs.

Here’s the link to the cute Valentine’s.  We added his favorite Paw Patrol stickers!!

My Boys

It has been a while since I wrote.  I started my writing business because I loved writing and my young children gave me so many ideas.  I also had things I wanted to share with them like my time in the US Coast Guard but could not find a book that really shared the things they would be interested in learning, so I wrote and published one to share with them.  Now my oldest son’s favorite thing is his Coast Guard Lego set!

I started this blog with the hope of sharing some of our experiences with our son’s Asperger’s.  I was hoping to write regularly teaching all the things we learn and sharing experiences.  Our house went thru a lot of changes and I just did not have time for writing.  As the dust has settled I am ready to share and  have so much to share.  A year ago we were really just starting to understand the diagnosis…now we have so much to share.

Our oldest son was diagnosed with Asperger’s at the age of four.  He had a lot of behavior problems that resulted mainly from sensory issues.  His other struggles are social.  It is honestly hard for me to remember because he is a totally different kid now.  He completed 24 weeks of occupational therapy, has a home therapy room, and he is a great kid now.  He has learned so much about what makes him feel better and what makes him feel yucky it is a totally new world for him.  He told the dentist he could not have the toothpaste because it has red 40 and blue 1 and asked for a substitution.

My youngest son, our baby, in so many ways is opposite of his brother.  At 20 months the only expressive language he used was “NO.”  He had never cried for a diaper change, never asked for food or drink, just would not communicate verbally or non-verbally.  At first I thought I was over worried since his brother started talking at 7 months.  We looked and looked for therapy nothing was available; he is still on a waiting list.  He had a beautiful voice when he would talk but it was on his terms never to communicate, never imitate, and certainly not on demand even if he did want the water or snack.

I talked to a friend that was and audiologist she said don’t use categories.  She also said you will have to teach him what I’m gonna call the “threes” a dog in person, a dog in a photo, and drawing of the dog.  She also checked his hearing which was fine.  We had just figured out an allergy problem so she said he may just catch up if he was not hearing well with all the infections.  This was a very challenging time.  I had never taught my older two to talk, they just picked it up.

After about a week of no categories and lots of threes talk he used his first word “CUP!”  We found a college student who was wanting to go into speech therapy to work with him.  It was so great having her, he slowly got more and more words and started using them to express his needs.  If he was in a good mood he would sometimes imitate.  Cup meant he needed a drink and bar meant he was hungry, granola bars were his favorite.

The biggest change came when we figured out the other allergy.  I should have known earlier but the doctors kept telling me no he was not allergic to milk.  He had been really sick for about a week.  All he would eat were his bars .  We had taken milk away but it would get better for a while then he would get worse again.  It for some reason just clicked and I checked the bars ingredients, the only thing he had really eaten, they contained whey.  What is whey?  A protein that is contained in the liquid portion of milk a byproduct of making cheese that is waste…except…they put it in LOTS of other things in really high concentrations!  It has been six weeks since we eliminated ALL milk except cheese.  He is a talking machine!!  He is a completely different kid.  This morning for the first time he told me he was hungry!!

We had the amazing experience of attending the Autism and Asperger’s Conference in Salt Lake City, UT this summer.  We learned so much and confirmed so many things we had done with our boys to see huge improvements.  There is so much to share.  Little things can make a big difference but you are not likely to hear about them at the doctors.  I already had the joy of sharing this story with one friend that has seen positive changes in her little guy.  What a blessing!