In our quest to help our children learn how to do “normal” things, reach age-appropriate goals and milestones, it can get overwhelming. Sometimes in that frantic push it can be easy to forget that sometimes we should just let them be. Be themselves. Be unique. That it’s okay to be different. Sometimes it’s even better. This quote sums that up beautifully.
If you didn’t know, we are in the middle of a pcs (military acronym for moving to a new duty station). Due to the fact we have moved away from our last duty station and therapists and haven’t yet reached our final destination- we have had no therapy of any kind since the start of May. The lack of therapy is starting to show on our kids. The lack of routine and assistance has become an issue. A issue we can not fix until we reach our new duty station. However, no one likes to see their children regress and suffer. To help aid them we have started trying to incorporate their past therapy techniques as we can.
One tip of being on the move with your littles that are missing out on therapy is to talk with your child’s therapist before you move for helpful advice and things you can do on your own to help maintain the levels they have reached.
For example: We talked with Sb’s PT before we moved to see what fun things we can do on the move to help her progression with her coordination. She told us to go to the park and walk her up and down the stairs. She gave us further information on what exactly what to do. But the mere fact we can easily go to a park to do therapy while on vacation or during a move is awesome and more importantly; doable.
Not all therapy is so easily achieved. We don’t stress about what we can’t do and we make sure we do plenty of what we can. In the end everyone is happy. SB and the other spawn get to play and mommy and daddy feel like real parents (Compared to those alien ones that spike horns and carry a sickle when their children misbehave).
So, at times with all the therapy my boys get, it can definitely be overwhelming. Sometimes I wonder, is it all helping? Then I get a pearl like this one. My oldest, who is 5, completed this homework with my husband. The assignment ended with him drawing a cat. And I could tell it was a cat! Never would have happened even a few months ago. So proud of him. I’ll tuck this pearl away for the next time I’m stuck in traffic late for a therapy appt. wondering if it’s all worth it 🙂
So, I am guilty as the next gal of complaining about our insurance. Maybe we get too much junk mail from them, it takes too long to get a reply back when I send an email, I spend a lifetime on hold, etc., etc., etc. But the truth is, my kids wouldn’t be anywhere near where they are without the therapy they’ve had. And to continue being honest, there is no way my husband and I could have afforded that therapy without the insurance we have. Here is one bill that covers a one-month period for just one of my boys, for just one of the types of therapy they receive.
We got another bill recently for both boys for their ABA services the entire time we lived in Arizona (about 8 months or so). The total was almost $20, 000. 00 Seriously. Like I said above, even if I went back to teaching and somehow had three jobs, we couldn’t cover that. So, I’m taking this as a wake-up call and reminder to be thankful for our insurance. I’ll try to keep it in mind the next time I’m on hold for eons.
I’m on a new journey with one of my kids. One I have never been on. I thought we had been to every medical specialty there was; from allergy/immunology to oncology. So when we were sent to a pediatric orthopedist I was a little nervous. So nervous, I took along one of my children’s ABAs who could translate for me. My mind tends to go blank during appointments with all the information being thrown at me.
Tip: It’s not uncommon for me to break out my phone to voice record (with everyone’s consent). This way, when I recount the conversations to Hubs he gets a larger picture than just my memory (which we know is crap).
So here we are at a new specialty, with a new kid. But what had gotten us here?
Of course with two dx older siblings SB has been and is watched very closely. Not to mention her brother and sisters rare auto immune diseases; she is tested yearly. So it should have been no surprise when a doctor asked us if we had any concerns with SB; because he did.
Concerns? Well she almost died from RSV at a month old; spent a week in the hospital. She has now developed serious asthma. She didn’t make a sound until this past October, when finally Bugs ABA agreed with me I wasn’t crazy for my concerns and I took her in for a hearing test; which she failed. A month later she has tubes put in and has finally started making some words and nosies. She did the Army crawl for several months before she finally started walking late. Up until that point we always made the joke how she was born with toes that were perfect for sandals. There was almost a inch gap between her big toe and second toe. Little did we know what that physical meant for her.
When she stated walking we figured it out. In my dad’s generation it’s called “pidgon toed”. Nowadays, it is referred to as “in toeing” or tibia torsion Regardless of what you call it- it is where her leg bones below her knees are formed inward. So her knees and feet face in; causing pain, muscle weakness and muscle tightness.
So we (it is hard to get a 2 year old to do pt!) were given pt once a week for a hour at a time. I have seen a difference. However, one hour a week will not correct the problem. After seeing the orthopedic surgeon, she told us the answer was breaking our child’s legs.
Um, yea. Otherwise she said there was no option. Sorry! Don’t agree! And neither does the pt. We are now waiting on a second opinion to come through.
If you read the link you would see where they don’t suggest surgery until after age 8. We are going with these guidelines; however, due to the degree of her condition doing nothing is not an option. I’m sorry, but my parental intuition tells me something can be done to help (not cure) her. Currently she can’t walk up stairs, gets a few bloody noses and a multitude of bloody cuts from falling.
Lucky for us, we are surrounded by some amazing people. SBs pt went to a class last weekend and spoke about SB. There are options for us! We are very excited. Breaking our little girls legs just seemed, so, um, not right? I don’t even have words to explain it. The biggest question is- will Tricare cover it?
We were told by SBs pt that due to us at a peace time, they are more tighter on what they approve. Ehh?
I don’t have an answer. But what I can do it keep you all updated on what will happen. I will find out. And I will share my findings. Until then, wish us luck.