Thursday, April 7, 2011

We Are Alone in this Together

It has been quite a while since my last post, but I have been reading all of your posts. Those who have posted this year (2011) have really hit home for me because I feel as though I can relate in one way or another.

First off, in January, I had a baby- my fourth boy, and fifth child. Two weeks after that, we moved our family from Idaho back to Utah. I feel like I can totally relate to the chaos of having not only a child with special needs but a mother to more than one child. Add on top of that the responsbilities as wife AND full-time employee, well, there is never any sort of down time. For me, because organization is NOT my forte, I find myself scrambling from one deadline or emergency to the next. In fact, you would not believe the mountain of clean laundry that has overtaken the baby's room just because I haven't had time (or made time) to deal with it.

Secondly, on the side bar of this blog, I'm listed as having a daughter with DiGeorge syndrome. Just to give you a brief synopsis of what has been happening with my daughter, Kanani, we also had her in a Utah charter school last year. Her IEP was also 'dissolved' to where she was receiving no documented services from the school. What was really devastating (looking back at it now) was that the Charter school failed to re-establish eligibility which was required a year ago. So when we went back to school in August, we had to start FROM SCRATCH on testing and determining whether or not she was eligible for an IEP and what recommended services were.

Originally, her IEP was due to be renewed on 9-18-10, but because of the testing that had to get done, we did not get the required eligibility established and signed off on until the end of January 2011. So, we too have fallen through the cracks and are now in dire need of a tutor to get caught up.

Thirdly, we have gone through a battery of testing with a neuropsychologist and last week, received additional diagnoses of ADHD, Asperger's syndrome, and nonverbal learning disability. We were strongly advised to medicate her and also to pursue aggressive social therapy, speech therapy, and occupational therapy as all are deemed to be medically necessary.

As a result of all these new things, we trialed one med for a day and had horrible response to the medication. This weekend we will trial a second medicine... I've been looking for outpatient rehab and discovered that no one south of Salt Lake will bill my insurance... and that social therapy is not available or offered in Utah.

I'm terribly overwhelmed by the gap that lies betweeen the amount of help and services she needs and the services that are available to her in Utah and at her school. What makes matters worse (for me) is that as a parent I feel like a fraud, a faker, because in reality, I've no idea how we survive and most of the time in making decisions for her care, I give it my best guess.

The reason why I share my scattered thoughts with you is not only to vent the difficulties of my unique circumstances, but to also acknowledge that each of us have our own unique combination of trials that we are dealing with. And while none of us have identical experiences, we can (I DO!!!) take comfort in knowing that while we are alone in our own set of challenges, we are all in Holland together and can relate in some respects.

So. Thank you all for being so willing and generous to share your lives with me. Its nice to know that even though my life sucks on some days, there are other mothers out there that have equally bad daysm, too. Just like me. Love you all!!


Katherine said...

I totally understand what you mean about "guessing" what is the best thing. I have to rely heavily on my sons doctors but most of the time I feel like I have no idea what I am doing. It was good to hear from you. Keep your chin up.

tiptoe mama said...

I'm glad to hear from you again! You're right, and what a great way to say it: We are alone in this together. so true. loved the post. Hope all goes well.