Welcome, 2013

Exactly one  year ago, I wrote this post, https://adoptingspecialneeds.wordpress.com/2012/01/page/3/ . My word for 2012 was going to be “moment“, as staying in the moment. Looking back, I would have to say I failed more often then I succeeded. There was a a 3 month period over the summer where I was unable to start fresh each moment. Getting physically beat up can do that to a person.

The last couple of months The Dad has been Hope’s primary caregiver. Yesterday, Hope raged and got him with a head butt in the face. It looked painful. She kicked me, but it didn’t catch me by surprise, as she had already kicked The Dad’s brother.

Hope is on medication, which she wasn’t on this time last year. Her raging is a little less in terms of frequency and intensity- but not much. This year provided very little healing for Hope.

We have a new configuration of therapists lined up. If you are interested you can read it on the other blog.

I am looking at 2013 as a fresh start, but I decided to use the word “moment” again. I do not want to repeat all of 2012’s mistakes again this year. I still think an RTF is Hope’s best shot, but I am willing to try a new approach. For Hope’s sake, for my families sake, I pray for healing.

Happy Versus Educated: Part II

mamabear

The comments on my last post left me much to think about. Thank you to each person who took the time to share their thoughts. I realized my first post was incomplete. There are children who have special needs and are being educated and are happy. This is not the situation I find myself in. However, I should have stated that this decision is not one that  all parents of children with special needs face.

I have a meeting tomorrow with Hope’s school, but it is not consuming my energy. Hope has been as volatile and hard to contain at school as she has been at home. In true RAD form, she has been trying to triangulate between us and her school. This is one of those periodic check in meetings to try and contain the manipulative behavior.

Wednesday the CSE is for GB. GB’s situation is different. GB is never a problem for the school and always works hard. I expected this to be an easy year. Even though she changed schools, she brought her teacher, aides, and support services from the old school. The new school is the neighborhood school, with all the social opportunities that implies. The only note of warning in the background was GB’s state test scores from last spring. They were as low as they could be. The committee assured me that the tests did not really measure what was learned. Having been in the education field for so many years, I knew the one thing these tests were good for was to predict who would be able to pass the exams in high school and earn a diploma. When I said that out loud, nobody could disagree with me.

This year GB’ teacher  has structured things differently. GB is still in a class with seven other students, two aides, and Mr. Teacher. This year, all eight students are doing Saxon fourth grade math. It replaced the Touch Math GB used the previous two years. Saxon has a spiraling curriculum, which means that they cover a little bit of everything each year, each year going into more detail. At the moment, they are doing two step patterns, place value, fractions and multiplication with regrouping. GB struggles with simple repeating patterns, does not understand that for fractions to work, the pieces have to be the same size, and was working on multiplication facts with Touch Math. Since the class is doing math as a group, GB is lost much of the time. The whole group is working on fourth grade spelling. GB comes home with spelling exercises where she can read less than half the words on the list. Homework is taking eighty minutes a night, when GB is cooperative and focused. GB’s anxiety level is through the roof.

GB is a fourth grader this year, but the aides still require ice cream money and school store money to come in a labeled, sealed envelope- a requirement none of the other fourth grades have and one she doesn’t need.

CSE meetings only go well when I can tell them exactly what I want and why. I have no answers going into this meeting. I only know they better be expecting Mama Bear.

I Slayed a Dragon

Today, I slayed one of my dragons. Not using a sword. Not using my intellect. I slayed this dragon with an abundance of paperwork. Every email, every note home, every Tuesday Therapy post, every piece of paper I could find, I dumped on the SPOA  meeting table., along with the IEPs and evaluations that weren’t good enough last week. The ICM worker was eloquent in her description of me getting the sh*t beat out of me. Hope has been approved for waiver services.


No time to celebrate. Next dragon is  family court with MK this afternoon. I will update on MK and Booboo on the other blog when I get back.


Thank you all for your prayers and support. I appreciate everyone of you.

Follow up to The State Lady

Today I spoke with the neuropsychologist who wrote the report saying GB was autistic. My question was really simple. After having her (state) agency write a report that another person, from a different part of her agency (read here) read and said the report was not enough to get GB services, was there any point of taking on THIS particular dragon. Her response was mind numbing.  She said if we repeat the exact same testing on GB’s 8th birthday, she would qualify for all available services.  Not because GB would be any different in two months (she won’t be), but because the norms they use to score  the testing instruments change the day she turns eight. I guess some days the dragon does win.

The State Lady

Today the state intake worker from DDSO came and spent an hour with us and met GB. She is the first step on a long road to get GB some services as developmentally disabled. The mental health people turned her down, as when she is not psychotic, she is not difficult enough to handle. Hope on the other hand, will be receiving 10 hours of respite from MHA, courtesy of the meltdown she had while we were trying to do a preliminary intake.

The DDSO worker said that GB is such a complicated kid that GB and I would undoubtedly have to meet with one of the two  state psychologists that do reviews on eligibility for my area. Sometimes it gets tiring to always have to battle one dragon or another. Then I remind myself how difficult it is to be GB and how much energy she puts into everyday. It usually makes me stop whining.

The worker said they were trying to deal with budget cuts by tightening up on eligibility requirements. I am going to call the neuropsychologist at the George Jervis clinic tomorrow and ask her what hoops I have to jump through. They are all under the same state director, so it seems silly that one person tests and recommends the service, and second, less educated person, reads the report, and sends it to a third person (another psychologist), who wants to see us again, to compare us to the report. Maybe all that duplication of service is contributing to the state budget problems.

How do parents who don’t know how to fight the system get services for their kids?

Taking Slow Deep Breaths…

Today, I got up the courage to tackle my latest dragon.  Several weeks ago, I was caught by surprise when what I thought was routine neuro-psychological testing started with the head of the neuro-psych department at the George Jarvis Clinic telling me GB was on the spectrum. No, not FASD (although she said that was still there), ASD. How can a child start EI services at 7 months, special ed preschool at 33 months and receive special ed services for 2+ years from the district and have everyone miss autism? The psychologist told me about all the services GB should be receiving and is not. It was a very detailed discussion that lasted over 2 hours. I remember it happening, but I don’t remember a single service that GB needs and is not currently receiving. Not one.

I have always been adept at getting the services my kids needed. I have never been particularly interested in following protocol and I absorb information about my  kids’ disabilities thoroughly and efficiently. So why is it that, three weeks later, I have done absolutely nothing. I have the woman’s phone number- so it is not because I don’t know what services GB needs- a phone call would take care of that. It is not a lack of time; with both girls in school, I have one or two days without appointments most weeks.

I have to conclude it is fear. Fear of what, I am not sure. Fear that I will be unable to get GB what she needs? Fear that there will be something else lurking in the shadows, waiting to be found? Maybe it is fear I shouldn’t have taken on Hope. I am not sure I would have if they had given me this information back in July when they first saw GB. Fear is not usually a good place to operate from.  Rather than spend more time and energy thinking about it, I decided to call the ODDS (Office of Developmental Disability Services) and request an intake package. It is a tiny step, but at least I am not running from my dragon. And, there is always tomorrow.