We met for Parker’s IEP last week. Most of those at the table I truly love and owe an amazing amount of thanks too.
Notice I said most.
I had requested that the Occupation Therapist put into the IEP the need for an actual evaluation for Parker and the DATE by which it would be completed. Yup, two years and he’s never been formally evaluated. Professionalism at it’s finest I tell ya.
Of course that one little second, the what maybe 20 seconds it would have required to simply have hand written it into the IEP copy and then initialed it, was obviously too much effort. Because I didn’t notice it until after the OT had left I asked Parker’s classroom teacher about it. Miss A. explained that the OT had had a horrid day, didn’t have time to add it to the IEP, but promised that it would be.
Famous last words.
We’ve requested a new OT, but there’s a big possibility that there isn’t another OT available and so we will be stuck with current OT who now knows we have placed a formal complaint.
Cause I love livin’ on the edge, Baby.
Parker’s PT goals are basic:
Parker will increase balance in order to stand on one, right and left, leg for up to 5 seconds.
Parker will step down from a 6 to 12 inch height independently and maintain standing independently 4/4xs. Progress to jumping down with staggered feet then together. Work on going up and down stairs independently without sitting down afterwards.
Parker will stand on a balance board independently for up to 5 minutes.
(This would be a MUCH easier goal to conquer if we actually HAD a balance board. I asked to borrow one but was told they were needed for the adapted PE kids.)
These are goals that need to be mastered in order for Parker to kick a ball. Walk down the steps by himself. Have the core strength for many other activities, and finally, ride a bike.
And for those who believe the ability to ride a bike is just for enjoyment, that isn’t exactly so. The sensory input alone from a simple bike ride is huge. HUGE. Google it.
When I pulled the fund raising information from Parker’s blog, I made the mistake of hoping that a miracle would occur and Now I Can would be able to find the magic codes that would entice our insurance company to pay for these sessions. I called our insurance company today and was told what I’ve always been told…..’the code provided are not codes that would be covered.’
I should just have that tattooed that on my butt, I’ve heard it so many times.
My insurance company doesn’t see these therapies as medically necessary.
I can’t help but wonder how those who make these decisions at my insurance company would feel if they were told that for the rest of their lives, after they peed, they would have to ask someone else to zip up their zipper. Because, right now, THAT’S Parker’s reality.
I mean, seriously, what is the value of quality of life and the ability to do things like button your own clothes? Or tie your shoes. Or dial 911 on a phone in the case of emergency.
And while I’m speaking of my insurance company, which is also owns the hospitals around here, I learned an interesting tidbit today. There are FOUR Lobbyists that represent my insurance company. FOUR. And each get paid upwards of $200,000 dollars a year. That translates into a hell of a lot of Gucci shoes, eh?
And I’m just trying to find a way to provide my kid with enough therapy to walk down the stairs independently.
In my world this is the definition of screwed up.
I won’t even go over the fine motor (OT) skills. They are the exact same goals as always, which will never be addressed when the actual OT is here…..as always. I’m not being snarky here, just realistic.
So my sweet Mom is going to take those over and I’m going to focus on the academic goals and the never ending quest to provide Parker with the PROFESSIONAL therapies he still needs.
The other day when we were at Kangaroo Zoo I noticed how far behind Parker was in his physical skills. Being his handsome and extremely charismatic self, <grin> he had kids coming over and wanting to play with him. Inviting him to join them. Except he couldn’t keep up because he is so behind in the physical skills kids usually pick up as babies, and he totally missed during that part of his development because of being so sick. I basically held him for his first almost 4 years.
That was the exact bit of reality I needed to whop me upside the head and make me realize I need to get off my duff and make something happen.
Now if you’ll excuse me, I’m off to find my army boots so I can kick down some of these barriers that are keeping this Hero of mine from living the best life he can.
About Tammy and Parker
If you have medicaid there is an amazing therapist named Ben down at the Orem pediatric IHC facility. We drove once a week. They also have an amazing therapist named Brian who is the BEST sensory OT in the valley. They always have students so we were never understaffed for my hero. Then we moved. Where we get 35 hours of extra help in home, and in home therapy for an 8 year old. ( who I might add can ride a bike, but can’t walk up the stairs, or balance on a balance beam OR stand on one foot or jump, so I guess it is possible) There was never an answer as to why you wouldn’t think of leaving for someplace that allowed your son the best, because it is available in other states that is not dependent on you and your husbands income.
Picking up and leaving a state and a job and selling a house simply isn’t as feasible for some as it may be for others. Especially when you are as close to retirement as Reed is.
My parents moved to Utah from DC so we could be close enough to take care of them as they aged. They have been a HUGE support for Parker. I also have married kids that we’d be leaving if we were to move to another state. There is a LOT to be said about the support of family.
I’ve chosen to become more involved in the political process in this state, working closer with those in office and soon to be running for office, and organizations that work for families of kids with special needs. I hope to be a positive force for all families of kids with special needs in this state.
I’m also very resourceful. My Mom is going to take over working with Parker on many of his fine motor skills so I can focus on other areas. I’m reading books and putting together plans and spending a lot of time on my knees asking for guidance. I just need to get my plan in place.
The goals I’ve listed for Parker aren’t goals that I came up with, but his current PT has shared with us. It drives her nuts to think of the district deciding that Parker no longer qualifies for one on one therapy.
It’s not going to be easy. But it will be worth it.
In alpine their idea of PT is if you can get around in a classroom you don’t need it. Why not utilize his Meidicaid and get him into the IHC facility in Orem. they have a WONDERFUL program. You could go three times a week at more than one activity and have all 3 serices you need. So after retirement would you NOT consider moving? It seems if the state where you live is not willing to get you help, when you “complain” or worry, is it all for naught… meaning a move to a new state would fix the problem. In fact, we have so many hours that I am not able to fulfill all of them for our worker. I can’t find 35 hours of time for her to be here .
Perhaps after we retired. As an only child I still need to be close enough to care for my parents as they age. My first choice would be to work to make a difference here. The whole bloom where you are planted thing. We are gathering up referrals for the PCMC therapy program in Sandy. Medicaid will pay for 10 sessions per specialty. This will get him through the summer. I’d still love to do the Now I Can program, but as of now that is off the table.