Friday, September 19, 2008

Thru Sarah's Eyes


When Sarah looks thru a camera, this is what she sees.... Sarah constantly reminds me that I need to look thru "her camera", so I can see her. As most know Sarah is different from most children and we've been struggling for sometime in finding what it is that makes her so different. I think today was our first glimpse at what makes Sarah, Sarah. We traveled 41 miles to Bedford to meet her new shrink, (don't ask me to spell it..) Dr. Quadri sat and interacted with Sarah, observed and chatted with me for an hour. He READ my notes and medication/behavior charts and these are his thoughts..
Sarah suffers from severe anxiety disorder and that Sarah is an atypical HIGHLY functioning autistic child. The anxiety stems from the symptoms an autistic child suffers from. Children with autism live in very rigid worlds, many don't have any leeway or flex in their personality, habits, routines or environments. Tweaking or messing with their world causes chaos, panic and much stress to these children (and adults) and for Sarah we see anger, frustration, physical violence, vocal expression because she can't cope or deal with.
Folks keep in mind, I'm over simplifying things for lack of space and time. Want to learn about autism? There are HUNDREDS of site on the web, pick one and start reading.
For Sarah we will be starting another medication regimen with oddly enough one of the same meds we tried to treat her seizures. It was explained to me that her neurologist was using the recommended dosage for children to treat SEIZURES, and because it is a mood altering drug it messed with her behavior. So, Dr. Quadri intends to bring her back up to the "breaking" level that motivated me to ask for something new, but then start tweaking dosage to find what works for Sarah. Once we have addressed the anxiety and we "level" Sarah out, he'd like to start addressing her autism. Meaning we'll need to find therapy, play therapy, alter her education program at school and eventually even get the family into therapy to teach us techniques and coping tools.
If I thought finding a Dr. to help Sarah was difficult, I feel certain that finding a therapist that will accept Tricare, and getting Tricare to approve a therapist will be like walking thru red hot broken glass. But I have a five page list of therapist to start calling Monday morning. I'm dusting off the Tricare handbook and their phone lines will be burning up. And the poor school district will have to accept that a Behavior Intervention Class is not the answer for Sarah. They'll have to find and provide the means to educate Sarah on HER terms. Because autistic tendencies and symptoms are something that can be broken down and relearned. It's ingrained in that child, it's not learned behavior, it's not modified, they are who they are. They are to be overcome and worked to that persons advantage....
So, from time to time, I'm going to have to stop and remember to look thru Sarah's eyes, just to put me back into perspective....

12 comments:

Neabear said...

I used to work as an instructional aide in classroom for severly handicapped childrend. If they did not fit in the LH(Learning Handicapped) they were in our class. I worked with at least two boys who with autism. We definitely had our challenging times. One of them flew of the handle so to speak frequently. He had a one on one aide so that the other adults can focus on the other kids better. If he needed to be taken out of the setting to calm down, the one on one could do that. The challenges were figuring out what set him off in the first place so we could change that to avoid it the next time. I admire you for the effort you are putting in to help Sarah be the best she can be. Good Luck with all those phone calls you have to make.

Jenn said...

Great post. You should keep several of Sarah's pictures and keep a small and simple scrapbook of Sarah's view on life. It would be interesting to see if her view changes as her medicine does.

Staci said...

I have so much hope and excitement for you! Even though nothing is "fixed" yet - just to have a plan is a HUGE step. YAH! And I love Sarah's pictures. She's so stinking smart! A picture of the kid menu - really? Tanner wouldn't even know where the kid menu was!

celticmystyc said...

Neabear, thank you for your comments...not to be rude but how did you stumble upon this blog??

Susan said...

I like Jenn's idea on the scrapbook idea. Also, although we are half a country away....we think of you all daily and your struggles. I look at my sister and wonder if there's any hope for Dalton with his "issues" and know that you are able to handle things so much better than she is. Just know we're thinking of you all!

Hugs and Kisses to you all!

Love, Susan

celticmystyc said...

Su -
Dalton just needs a GREAT Dr. They're hard to find, and we are so programmed to accept our current Dr.'s diagnoses. I'm learning the system and with each new round, I'm becoming a better advocate for Sarah. I know Dalton was born with a truck load of "issues" but finding the right balance of meds would help, but so does therapy, schooling and a loving family. You guys already provide the loving family....

Becky B. said...

Scrapbook that right now. Years from now, you will look back on it and remember your journey with Sarah. She will look back on it as well and it will tell her the story first hand of how loved she is and how hard you have fought for her. She will appreciate that. So many times we scrapbook the "events" but not the thoughts and feelings. Get that down.

MsT said...

I pray for sarah and your family always! I'm not worried about sarah she's a fighter she will fight this and win from this monster. My pet-peeve is the stupid tricare of the military. I hate them for a passion! They think your just a number. I know from my experience I almost didn't get treatment from this so called tricare.
My experiences of working with many doctors i know there is a doctor out there to help this situation.
I'm glad shaunery your driving forward to find that doctor...oh he's out there hiding I can feel it!

Jeanne said...

Just seeing you Friday night was wonderful. You look lighter with a bit of that off of your shoulders. Thank goodness you have strong shoulders.

celticmystyc said...

Jeanne,
You're sweet but I haven't been carrying the load alone...my FRIENDS have loaned me their shoulders too....we ALL have strong shoulders!

Annie Wharton said...

You know Shaun, God knew what He was doing when he gave you and David Sarah...He knew she'd have friends and family to share the best they had to give with her, and one day everyone will see the wonderful fruits of their labors. I feel honored to be part of a family that goes out of their way to help one another, especially thier children...You are Awesome!!!

Safety1 said...

I have looked at the picture of the tree at least 1000 times and wonder what made Sarah stop and take the picture.... Was it the texture, smell, color????? What does she see that the rest of the world is missing... She seems to see more than we do

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