Monday, May 17, 2010

Options for Callie (Callie's week)


Monday - Callie went to see Dr. Epley (her eye surgeon) because of the way she is tipping her chin up to look at things. He said it is yet another alignment issue, and worst case scenario, we are looking at a 3rd eye surgery...but not for at least a year if at all, he thinks. Right now, we are going to chemically patch one eye with an eye drop to relax her muscles so she can hopefully keep her eyes focused together and keep control of the muscles better. Dr. Epley is not overly optimistic that this will work. I pray that it does though! We will know in the next month. If this doesn't work, we will move onto glasses for her, hopefully they will help to give her more control of the muscles...Dr. Epley has said that he has seen wonderful results with the glasses if we need to go there, to the point of even being able to avoid surgery with the use of the glasses! The catch here is that the glasses would be to worsen her vision to make the eye muscles work harder (thus strengthening them)...and it can be hard to keep glasses on a 2 year old! It was a lot of information to take in, but at the same time, it is really nice to know what we are potentially up against.

Tuesday - Callie's physical therapy evaluations so they can be prepared for Wednesday's meeting. Her verbal is testing at a 4 year old, her cognitive a as a 3 year old, her fine motor skills are at the 24-28 month level, her gross motor skills are testing as that of a 13-14 month old (She is currently 31 months old). I was a little surprised her fine motor was behind by that much, but otherwise, it was about what I expected!

Wednesday - Callie and I were supposed to go argue (I mean, meet) with a Sultan School District official, the developmental preschool teacher, the head of the special ed department, Callie's social worker (whom we have never met!), and a therapist from the district special ed program (whom no one seems to know if she is a occupational or physical therapist) to talk about Developmental preschool.

Now this may not seem like a big deal to many people out there, but to me, it really is! I am a HOMESCHOOL mom. I don't send ANY of my children away to be educated according to someone else's standard...least of all my disabled child who is not as able to 'keep up' or 'defend' herself! It should be an interesting meeting.

The reason for this meeting is that Callie is getting too old for the program she is currently in...it is called birth to three. When she turns 3 in Oct. she will no longer qualify for these services. Insurance stuff changes, too, as far as what they are willing to pay for. If we do not go with school district services, insurance will only cover about 6 physical therapy sessions a YEAR. She really does need more than that...quite a bit more.

God's provision for this meeting was absolutely incredible! God gave me the words to speak, and the understanding to know what it was these officials were saying. God also prepared the way before I even got there!
The district official - was sick and couldn't make it.
The special ed program director - mandatory continuing education seminars all week, couldn't make it.
The preschool teacher - in a car accident on her way to the meeting - couldn't make it.

It ended up being me, the occupational therapist (OT) and the social worker. The therapist asked if I wanted to reschedule, and I declined. She warned that she doesn't know how to run the meetings, she is just there to watch Callie and observe while the others run the meeting...the social worker took the opportunity to jump in...she went on for about 5 minutes (not letting me get a word in edge wise!) about how a mother with no college education and 6 children could not possibly have the time or energy needed to meet the special needs of a disabled child, especially when she is trying to home educate all of those children, who are different levels and have different abilities...Callie needs to have professionals who can give her every possible advantage to go as far as she can in life...Callie needs individualized attention in order to progress...Callie needs the therapies and education provided by the district...The older Callie gets the less effective any type of therapy will be for her, so these early years are so important for Callie to get in as much as she can...the decisions we make here today will effect Callie for the rest of her life.

I sat there, listening, horrified...it was basically my worst nightmare...at least the start of it. When she got done, she had not pulled her punches, but she had also laid all of her cards on the table. She had not only read our file, but highlighted many things she wanted to bring up throughout it! Such as homeschooling, mom of 6 children, mom only having a highschool education, no school invovlement wanted by the family, request for medical records denied...I remember feeling frozen by fear for just a moment, then praying that God would give me the words to speak - and He did just that! I was then able to come in with something like, "Callie is a disabled child with different needs than my others, but each of my children are individuals with needs that are different from eachother! I work with each child where they are, not where someone else says they should be. Specific for Callie, we have a 30-40 minute regime of physical therapy activities we complete with her each day, including stretches and activities designed to help her with pelvic dissociation and elongation of the trunk on the weight bearing side of her body and activities to help her with the little bit of asymmetry that she has developed. We also work on her fine motor skills with activities such as lacing beads, playing in sensory tables, coloring and building puzzles. Callie also has eye exercises that we complete each day as per her eye surgeon. Callie participates currently in hippo therapy and physical therapy. We have seen a great deal of improvement since she has started both of these programs. For Callie's diagnosis of spastic diplegia cp, average age for walking is 4-5 years old. Callie took her first independent steps at 4 days shy of 2 1/2 years old, we will be continuing these activities after she ages out of the birth to three program and expect to continue seeing this kind of progress for her. Besides the activities Callie is currently participating in, we are also looking into swim therapy and a robotics therapy program..."

The OT was pretty impressed with our regiment for Callie. She read excerpts from a letter written by Callie's current physical therapist (Linda), which was a glowing review of how well our family works together to both challenge and encourage Callie, how well we are able to intuitively see other things we could do for therapy between sessions, and how Callie is thriving and learning new things each week because of this...it was a long, very positive letter!

The social worker re-voiced her concerns...adding in that it will be necessary for her to follow up with us on a semi-annual basis to make sure Callie is actually progressing and getting what she needs to thrive in such a family with semi annual home visits...(I remember feeling really flush at this point!)

The OT jumped in and said she knows we are not interested in the preschool program, and gave their alternative therapy offer...a 20 minute session of occupational therapy once a week at the school, and I can not bring any other children with me...

I asked the OT what in her words was the difference between OT and PT...she said OT focuses on fine more skills, mostly the use and function of the hands...but they do work some on trunk control and they do not completely ignore gait.

Trunk control and gait are the FOCUSES with Callie. I asked why when she only shows a few months delay in fine motor, but a year and a half delay in gross motor they would focus on the fine motor...the answer was a shock to me!

The school wants Callie to be able to write so she is ready to be in kindergarten...but there are wheel chairs the district can make available to her should she need it when she is kindergarten age.

I asked if therapy would be any different in the preschool program (not because I was interested in it, but because I was curious!)...I was told it is not. The OT sitting before me IS the only therapist in the district. She sees 42 kids in 2 days. Each of them get 20 minutes.

Brain research tells us that gross motor skills need to be organized in the brain before fine motor skills can be honed. Brain research tells us that gross motor activities that cross mid line (something we work on a lot for Callie!) help with reading and math reasoning skills later. It lays a foundation of synoptic pathways in our brains that we use for the rest of our life...and they just want to SKIP this?!

We will be making a formal with drawl of Callie from the school program. What they are offering will not even help Callie with what she needs help with!

Directly following our meeting, I called HSLDA. I talked to them about the social worker wanting to make home visits and asked about the legality of it. They said they would check into it and get back to me...they called about 1 pm, saying that NO it is not legal for the social worker to MANDATE herself as Callie's advocate unless there are SUBSTANTIATED cases of abuse/neglect on the parts of the parents...not just an accusation, but something that is proven. They will be writing a letter to the school district and to the social worker on our behalf!

I am so glad that much of this is over Callie's head. I am glad she doesn't have to deal with the stress and strain or the weight of these decisions. She doesn't have to feel the pressure from the social worker. She gets to play, happy and carefree as any child should get to do...I on the other hand feel the weight of the choices we are making for her right now. The older she gets, the less her brain will be able to adapt - so the more we are able to do for her now, the better off she will be for the rest of her life...I understand this concept and am making the choices I feel are best for her. I have nothing but the best interest of my little girl in mind as I weigh in the cost/time/benefit of all the options I can find for her.

What a week! I am so glad to get to stay home today, and that Callie doesn't have therapy (she had the evaluation instead this week)...tomorrow we are off for hippo therapy for her and riding lessons for Anna...

On a much happier note, everyone seems to be over this illness, kefir smoothies have been started again, and we hope to build everyone's systems back up! We even let Justice have the smoothie today (I didn't put honey in it), and he really liked it!

5 comments:

  1. Michelle--It sounds like you are an awesome advocate (and teacher) for Callie. Way to ask the right questions TO them and be prepared with the right answers FOR them!

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  2. Thanks! What you don't see in the post is that I have been up praying and researching before 4 am every day for a week trying to be prepared with the right 'language' and freshening up on current brain research information...

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  3. All I can say is....WOW!!! You are an incredible mamma and Callie G is so lucky to have you!!

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  4. I'll be praying. God has a plan for Callie. Michelle, you are an awesome mom and it's great to hear how you advocate for your children.

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  5. You are doing an amazing job Michelle. Callie could not have a better "advocate". :)

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