Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.




Tuesday, June 18, 2013

Welcome to the Lisa Train

If you are a regular reader of our family adventures, then you already know our life is a hectic one, at times if feels like a runaway freight train, with no shortage of interesting obstacles.

Lately, however, it is becoming a bit ridiculous.

I am happy to report that my day surgery was a success. All went smoothly and I experienced no complications. Unfortunately, however, I have had very little time to rest. I received a phone call this week from Weston's GI doc. His blood tests have all come back normal.

The good news is, he does not have Celiac's Disease. The bad news is, the doctor is requesting an endoscopy and a colonoscopy with biopsy. She needs to get a better look at what is going on inside poor Weston. The list of possible diagnoses is a long one and includes: Crohn's Disease, Colitis, and Irritable Bowel Syndrome.

This will require yet another trip to Children's. Really?

Fortunately, Weston will be put to sleep for the procedures. It will be his turn for some day surgery.

Now, as if of all this is not enough.......

I met today with our advocate.

You remember her, don't you?



I figured since the new technical school for Weston was not forthcoming with accommodations, perhaps our attorney/pit bull would have more success, particularly in the area of negotiation and intimidation.

So today, she and I reviewed Weston's history, IQ, academic progress, social/emotional issues and neuropsych testing.I nearly dropped my teeth when she suggested that this technical school may not be the appropriate place for him.

With school letting out in a few days, I am now on a mad dash to secure an appropriate educational environment for Weston.

I canceled our meeting with the technical school and told them Weston would not be attending. I organized a new meeting with Weston's current school.

Since Nick's placement last year was a long hard-fought battle with the school, it is more than likely that finding an appropriate environment for Weston will require the same level of blood, sweat and tears, not to mention pit bull fees.

There goes the relaxing summer I planned.

It is now time once again to conserve our funds, and gather our strength.

Here we go again.

Welcome to my world.