Tuesday, April 16, 2013

Frustrations and Gratitude

We had a 504 meeting for Acroboy.  Well, I thought it was going to be a 504 meeting for Acroboy.

Acroboy's teacher has been giving him some accommodations to help him in class.  He gets extra reminders, visual cues, he sits close to her on the rug and so forth.  His reading skills have blossomed under her care and we have seen him make some progress socially.

He has a dual diagnosis of Autism Spectrum and ADHD, which should qualify him for an IEP.  I've met with the district twice about an IEP for him.  Both times I was told he wasn't behind enough for a perceived academic impact on him.  I also had him evaluated for speech at an early age since he didn't really talk until about his second birthday.  By the time we got the evaluation done he was speaking enough that he didn't qualify for services.  I had worked with him on colors, numbers, shapes, etc. and so there was little for outside resources to do.  He just wasn't far enough behind to warrant services. 


This time I wrote a letter stating that though he has dual diagnoses that both qualify him for an IEP, I would settle for a 504 to get the accommodations he is currently receiving written down on paper.  --Firstborn had "unofficial accommodations" and when we met up with a teacher who was less than understanding and willing to work with us, his grades took a nosedive.  I didn't want the same thing to happen to Acroboy. 

The school principal, school counselor, speech therapist, and teacher were all there.  The occupational therapist who examined Acroboy's handwriting was not.  The developmental pediatrician we saw at our favorite Autism medical center also diagnosed Acroboy with Hypotonia (or low muscle tone) in his hands.  Acroboy has terrible handwriting, though the occupational therapist said (via phone call to me at a different time) the handwriting is not out of line with what you would expect in a kindergartner.  

We went over Acroboy's strengths and weaknesses.  His teacher discussed how she had been working with Acroboy on a number of behaviors, social skills and things.  The school speech therapist talked about some of his struggles with social skills as well.  We all know he has had a hard time adjusting to kindergarten.  However, because he has learned to read above grade level and he can figure out times tables now that I have explained the concept to him (4x2 means four groups of two--and he figures out the answer eight), he does not meet their criteria for an educational impact.

They were quick to tell me that he still qualifies for and will receive speech help, but he does not get a 504.

I'm incredibly grateful that Acroboy (and really all of my boys) are doing so well academically.  I have high hopes that they will be able to be fully independent and contributing members of society.  I know many other families who are not so lucky.  Words can't really express how lucky I feel. 

I am frustrated and more than a little concerned that by not writing these accommodations down on paper I will encounter the same problems we did with Firstborn. 

The school officials also told me if we see Acroboy's grades and academic performance go down we can revisit the idea of a 504.  I asked that if I can't get a 504 for Acroboy, when they are placing him in a class next year, could they please place him in a class with a patient and understanding teacher who will work with him--even without the 504.  They assured me they will. 

Meanwhile the occupational therapist sent home a pencil grip and some exercises we can do at home to strengthen Acroboy's hands and improve his handwriting.  

I'm hoping and praying for the best. 

Thursday, April 4, 2013

The Verdict is In

I guess "verdict" isn't quite the right word, but I couldn't think of anything catchier.

So we got the test results back.  Baby Girl is allergic to milk.

I knew my other children were senstive to milk--it gave them all diahrhea until they were about 2 1/2 years old.  At this point I don't know if it was a milk allergy, or just a sensitivity.  In this case I do know.   

I'm still nursing Baby Girl, so I plan on cutting out dairy compltely from my diet.  I am already using rice milk for my cereal, but I will go back to non-dairy ice cream and cut out all cheese. I am hoping by doing so we'll be able to figure out if Baby Girl's rash is really due to the oats or due to the milk I've been ingesting in small quantities.  

Funnily enough, oats and barley were not tested, though wheat was.  She is not allergic to wheat, though a wheat allergy is not the same as celiacs disease.    Our doctor wants to send us to a pediatric gastroenterologist to look at her and run the necessary blood test.  The fact Baby Girl has not gained weight is reason enough to have her examined.

I will post more on her progress as we move forward.  I'm still paying attention to her sensory issues.  We got into a study looking at siblings at our "favorite Autism medical center".  I just want to do what I can for my baby to grow and develop the best she can. 

Wednesday, April 3, 2013

Clone wars (and Pete the Cat)

Yep, I got the title in part from Star Wars.  My kids are Star Wars fans, and so am I.  It seems appropriate though because there are many days I look around my house and I wish that I could clone myself.  Those days it feels like there are so many tasks to get done--they are all "warring" or competing for my attention. 

There are papers to go through, medical expense reports to submit to the flexible spending account, baby clothes to sort and send to consignment or give away, school papers to fill out and/or file, and of course--doctors' appointments to follow up on,  laundry to do, dishes, sweeping, and coats to be hung up. There are plastic bags by the front door need to go back to the grocery store for recycling.

There is mail to take to the post office. Plus I have plenty of projects like creating goal printables I will frame and hang on our wall in the sunroom.  My thought is by creating something nice to look at and framing it, we will give importance to our goals.

There are pants that need to be mended, curtains that need to be hemmed,  I need to finish my menu planning for the next couple of weeks and then go to the grocery store.  And my biggest and most important responsibility is taking care of my children and in particular Baby Girl who is overcoming an ear infection. 

I try to let go of the things that are unimportant, but sometimes when you are in the thick of things, it is hard to keep perspective. 

I am sure I am not alone in feeling this way.

Pete the Cat is a great little book where Pete keeps walking and singing no matter what he encounters, because "It's all good".  

It's days like these where I have to remind myself where my bar really needs to be set.  If the kids are all happy, fed, alive and asleep in their beds at the end of the day, then it is all good.  Everything else that gets done is icing on the cake. 

Monday, April 1, 2013

April is Autism Awareness Month

Seven years ago my only exposure to Autism was meeting Kim Peek, the gentleman who inspired the movie, "Rain Man". 

Or so I thought.

Little did I know that my sweet little eight-year-old boy who had a difficult time interacting with more than one child his age was on the Autism Spectrum.  Little did I know that he wasn't just a picky eater.  Little did I know that not only did Autism affect my oldest, but it also was affecting my two other sweet, and very hyperactive little boys.

Fast-forward to today.  I now know four of my children are affected with Autism. 

They have big hearts and good souls. They have trouble in social situations, but they are trying. I have high expectations for them because I believe they can soar. They do not deserve to be mocked, bullied, shunned or vilified. 

Unfortunately we've had experience in all of those. 

One in 88 children is affected with autism. One in 54 boys is affected.  Four of mine are. If your children are fine, be grateful and please give me and my children some patience. We are doing the best we can.

I am momma bear and I am going to fight for my kids and do everything I can to prepare them to face the world. I will be tough when it is called for, and gentle when they need it.

You can help by trying to understand.  You can help by spreading the word.  You can help by asking questions, and opening dialog.  My boys might accidentally offend you.  Let's talk about it and how we might fix the problem. If I don't know about it, I can't fix it.  You can help by being aware.

Thank you.