Shaky Ground
As a family, we’ve been lucky to have a pretty stable plan of care for Maddie. With a lot of phone calls and perseverance, we found a great day care for Maddie. The staff has been phenomenal with Maddie, and have been very considerate of her syndrome. They have been hands on, and we could not have asked for a better place for our daughter.
This past week, a wrench has been thrown into that plan. Maddie will be turning three years old in June. According to Michigan law, Maddie will be aging out of the toddler room at her daycare. Maddie will have to be placed in a room with the school aged children. Unfortunately, Maddie’s daycare thinks this will be a safety concern, and Maddie will no longer be able to continue at her daycare. This will be the case unless a waiver is granted by the state of Michigan which would allow Maddie to stay in her current room.
This is not the daycare’s fault. They are simply following the law. In a new room, Maddie would not have the soft surfaces or the close attentiveness that she currently has. The daycare has decided that Maddie would not be safe in that room. They are right, it probably wouldn’t be the best situation for our daughter.
Thankfully there is a process that may be a saving grace for Maddie’s routine. She would be able to stay in the toddler room, as long as the waiver is granted. I believe it should be granted. The daycare has given us plenty of reassurances that Maddie is doing great in her current room. The daycare has to follow the law, but will be inquiring about a waiver for Maddie’s situation.
We took Maddie to a speech therapy appointment. They did an assessment and scored Maddie’s focus and cognitive ability right at the 9 month old mark. Also, Maddie cannot pull herself up or walk yet. I hope whomever is making the decision for the waiver, takes all of this into account.
This week has thrown our world out of whack again. Nicole and I have already had conversations about our job statuses, and just what we would do. These are tough conversations to have, but we both share the same common goal, the safety and well being of our daughter. Whatever sacrifices we need to make, we will gladly make.
This is the life of a special needs parent at times. What you thought was working, suddenly doesn’t work anymore. Every single day you have to scratch and claw to make a plan of care work for your child. Even if you have a great plan in place, you run up against red tape and it throws everything out the window.
It does help that Maddie will be going to school in August. If everything goes well with her IEP (individualized education plan), she should be placed in a school and attending for half the day. One requirement of going to school is that Maddie will need a wheelchair. This is to keep her stable and safe since she isn’t walking yet. In yet another piece of red tape, insurances don’t typically approve wheelchairs until after a child’s third birthday, even if they aren’t mobile.
This week has felt like a lot of head banging. Age is just a number, especially when it comes to a child like Maddie. The ability and circumstances matter a lot more in a situation like ours. We might be on shaky ground right now, but we’re ready to fight the good fight. This is just another fight, and there will be many more. I just hope whomever has to deal with us, is ready.
-Written by Adam Birchmeier
