There are certain situations, feelings, concerns on this journey with Getty that need to be private for so many different reasons. I know a blog is a public forum and sometimes it is difficult to edit my thoughts and feelings without perhaps overstepping my bounds towards people, institutions, and/or a “system.”
I have given great thought and care to what I am about to write. It comes from my heart and while it could probably overflow with emotion, I do try and be as tactful as possible. It is not my intention to persuade others to feel a certain way or rather our way. It is my intention however to explain the situation and let others decide for themselves how they may handle a situation if heaven forbid they were ever on a similar journey.
Monday was Getty’s evaluation for her power chair. To tell you that she has been given ample training time, suitable and consistent power chairs, and clear guidelines for success would be lying. On the contrary, she has had three separate trial chairs over the past 7 months with BIG gaps in between with unacceptable training time to be ready for this evaluation.
Here is a little backstory………
The first power chair had no seating system, which means in order for my daughter to sit in it, she had to sit on my pillow — an unstable bedroom pillow. This was not only unsafe, but the only alternative at that point was no training at all.
Since there was no seating system, there was no consistent seating or trunk support for a child with has almost no supportive muscle strength. It also meant inconsistent transferring her in and out of the chair. So every time we would put her in the chair, for her it was like starting all over again, which took vital time away from her training and playtime.
The power chair was left in our home, which I am aware is not the norm. In fact it would have been a blessing to have, if it were not such a dangerous apparatus.
We were given sporadic training. There were all kinds of issues with the chair aside from the obvious instability in seating. The electronics were not reliable. Since Getty does not have the strength to use a joystick, she was given the option of some incredible fiber optic switches. With the slight touch of a couple of fingers she was able to move left, right, and forward just by breaking the light. The frustration was finding a tray of some kind to level out a piece of space around her arms to both lend support and also give her the space she needed to touch the switches. This took a lot of precious time.
From the moment we put her into the chair her eyes just lit up. She smiled, she cooed, and if I could translate, I think she would tell anyone this whole thing was rad! She was moving for the first time on her own! Getty was adventuring on her own and she was loving it.
Side note: Something very significant to note about SMA, highlighting type 1, is that not all kids can tolerate being upright in a sitting position. Just like all SMA kids, the one thing they have in common is their diagnosis and certain muscle strength. But for the most part our kids are diagnosed clinically by lack of SMN1 copies and the lack of ability to sit unassisted, stand, walk, etc. From there variations are endless. Type 1’s range in all kinds of ways. Some are verbal, while others are not. Some have stronger respiratory systems, while others do not. Some have really incredible arm and leg strength for a kid with SMA, while others may have already lost the ability to hold items. The list goes on and on. So there are, in certain regards, some ways to generalize, but for the most part all of our kids are different. Getty can still tolerate sitting completely upright assisted, while safely braced with the help of bi-pap ventilator. I have not pushed her to the point to see if she can tolerate sitting up off bi-pap, since being in the power chair is already such a strenuous activity, I feel it is safer that she obtain the breathing support she needs. So while in a power chair, she is always on a bi-pap ventilator.
After about a month of having the first chair in the house, it was taken back to the manufacturer. If the trainer was not in our presence for actual training I did not seek to independently to train her. It was dangerous to transfer her in and out of the chair, especially without help. It was also simply becoming a frustration for Getty, and I was not about to let her equate frustration with the power chair.
Three months passed without a chair and I got a call that another chair was going to be at the clinic to continue to train. We would have training for an entire month. I was elated. Scheduling with our trainer would be three days a week for about an hour each.
What was supposed to be a month, turned into three weeks. It was another one of those “organizing issues” I have been so accustomed to. I had gotten to a point that I did not believe anyone until I physically saw it in the clinic. I became very skeptical with time because I was beginning to feel like perhaps the only enthusiasm was only coming from Getty and our family in the pursuit of a power chair.
Once the chair was in the clinic we went for three weeks, which ended up being only three days out of each week for an hour or so a piece. We never missed an appointment, we stayed as long as we could and, most importantly, Getty loved every minute of it. She never showed frustration. She was a great student. She tolerated her time upright. I watched her numbers on her pulse oximeter carefully. She stayed in very comfortable ranges throughout all of her trainings.
The new chair had a seating system, it was fit for her pediatric size, She was using the fiber optic switches and for the most part the trainings went very well. She was working on moving left and right, forward, and stop.
We did keep running into electronic issues. Those issues would set training back and so unfortunately we would find that we did not have the complete amount of time to train, but wasted time to troubleshoot yet another issue and in the meantime it was to the determent of Getty’s precious time in the chair.
Side note: Something significant about the fiberoptic system that Getty is learning and has been so successful using is very nuanced. With the use of three fingers and a series of taps, she can command left, right, forward and stop. I think something else notable is that she cannot see her fingers or lower range obstacles, due to the fact that she is unable to move her head. Getty’s head is in a fixed position and it does not offer a flexible range of motion. She simply cannot move her head, so she relies on her understanding about the environment around her and her precise and purposeful touch of each switch. I am in awe as a witness to her knowledge of motion and her spacial awareness as she moves. Watching her dainty fingers slightly move as she navigates the power chair is a very emotional experience as her mother. I am so proud of her willingness and passion to move and have this love for exploring.
Getty was growing leaps and bounds in the second trial chair in the very limited about of time she had with it. Then the chair was stripped once more from her.
I was called by the trainer about two months later with good news. Another chair was ready for Getty. We scheduled at least two weeks worth of appointments to make sure we took every advantage Getty could to have time to play and to continue to master her skills.
After the appointments had been made I received a call from our insurance’s power chair evaluator that the evaluation would not be after the two weeks, but after only three days of practice, which is really ultimately after only about 4 hours of training. I cannot tell you how incredibly upset this news was to me. Once again I felt as though Getty’s best interests were not being taken into consideration. I felt as though her growth and successes were not being reinforced by sufficient time and proper training.
The chair itself was amazing. It was a great fit for Getty. Transferring her in and out was a breeze. The fiber optic switches were good but we found another problem that went with it. The new chair did not “talk” to the fiber optic switches the way the last chair had. So now in the four or so hours in the chair over three days, Getty had to learn new movements and locations for the switches. However in true Getty form, she figured it out and she moved forward with more mastery.
As the evaluation (Monday) came closer, my heart was so heavy. Some things I was well aware of going into this evaluation is that our insurance carrier, Kaiser, has no “special circumstances” in regards to her diagnosis. It is a cookie cutter evaluation. The training does not come from Kaiser trainers. They come from a third party — A third party that is not even privy to Kaiser’s evaluation standards!
So while our trainer is amazing, she trained Getty how she felt Getty needed to be trained, but without knowledge of how Kaiser may in fact have different standards of training. Vocabulary is different, commands and hand signals are different, etc. So how on earth can Kaiser outsource their training and not give the trainer an idea of what they need the patient to know in order to properly be evaluated?!
So here is what I do know:
My daughter cannot walk
My daughter cannot swallow
My daughter cannot eat by mouth
My daughter is losing her smile
My daughter cannot talk
My daughter can not leap and bound
My daughter cannot cough
My daughter has a degenerative disease
My daughter has a weak immune system and a cold is a very scary situation
My daughter needs to be on a pulse oximeter 24/7 to make sure her numbers are within normal
My daughter needs breathing support to sleep and/or sit upright
My daughter cannot hold her head up
My daughter cannot hold her body upright
My daughter has little to no muscle strength
My daughter needs three 1 hour long breathing treatments a day to remain healthy in her lungs
These are ALL things that SMA has taken from our daughter. These are all aspects of the disease that in some way or another has left Mark and I with grief that no parents should have to endure. As we grieve and at the same time, find a silver lining to absolutely everything we can, we have to FIGHT for everything she has to be a thriving three and a half year old.
And all I can ask is why? Why on earth does a family have to fight every waking day for something to instill safety, quality of life, and anything that any child should have the opportunity to have?
I try so hard not to be bitter. We try so hard to be able to find the energy to find another helpful person, send another email, and other phone number so someone, anyone to just listen how Getty’s situation and all SMA kids just need some special consideration in certain ways.
All of our kids deserve institutions to look outside the box and see that SMA kids are not impaired cognitively. They are bright, curious, and incredibly lovable human beings. They should be given every opportunity that any other child should get– Modified in some way of course — but still given the same opportunities to thrive in their own ways.
I have and will always stand by these words. If Getty showed absolutely no interest in a power chair, if Getty could not tolerate sitting upright, if for any reason Getty gave us the “no go” regarding her individual sense of mobility, then all of this would be moot.
Mark and I do not fight for the sake of fighting. Shit, we are human and we have a limited amount of energy as any other person. There would be no reason to force Getty into something she didn’t want and let me tell you — she would tell us.
But when she gets into the chair. Her eyes light up. She squeals and coos. She becomes alive in a way I cannot even explain. I know this penetrates my heart in a way I never thought was possible. Watching her move on her own is magical.
So Monday was the evaluation. In a short sentence, she rocked it. She turned on a dime to get out of places. She listened to her trainer to follow her. She was conscious of the room around her, even with all of the obvious obstacles we could see and she could not, she cautiously moved about the room with care. She turned left, turned right, she moved forward, and she stopped. Did she run into things sometimes? Yes. Did she sometimes not listen to her trainer’s commands immediately? Yes. Was she reckless? Never. Is she a robot? Absolutely not. And that is why I am writing this blog post.
My beautiful daughter is not a robot. She is a vibrant human being that has been given great challenges in life and she is rocking it! She has taken what I would consider a complete lack of consistent training times, equipment, accommodations, and she has blossomed and remained patient and successful. To say that we are so proud of her after Monday’s evaluation and everyday is a complete understatement.
The conversation after her evaluation was sterile at best. It was dehumanizing and insulting to Getty with her SMA type 1 diagnosis. The evaluator had no evaluation list or rather objective of any kind to show me what she was looking for.
When I asked, her response was,
“I just want to see how she is doing.”
I responded with, “Well, what does that mean?”
Her face was an absent facial expression of, “Oh, please do not pester me.” She asked no questions. She just sat there and then after the evaluation was over, she told Getty she did a great job and then that was about the end of it.
I asked all kinds of questions about next steps, that she had no answers. She wasn’t sure who made decisions in her own company but could only tell me that there would be a report I could get online by “hopefully” the end of the week. She didn’t know when a decision would be made, but that a group of people would take her report and all of the videos we had taken and make a decision.
The day was over. Mark being at work, Angie and I praised Getty to no end as we always do and then we were off to go home. I pulled over about a half a mile after leaving the clinic and I just cried. I couldn’t stop crying. My stoic heart was breaking as I laid my head on the steering wheel.
Why can’t people or rather Kaiser see what Getty has accomplished in such “stupid” circumstances is amazing and that she needs this chair like yesterday so we can help her thrive and get on with life. I mean, that seriously is all this comes down to.
I just want Getty to continue to thrive. I am sick and tired of sporadic trainings where she is in a new chair and has to learn everything all over again, only to be stripped of the chair a short while later. This is insulting and an obvious ignorance of her diagnosis.
So that was the day yesterday. I am trying to remain positive as much as I can, but the way that Kaiser has treated Getty and her “rare” disease has brought me to a place where I feel as though I can dictate how things will go down. I hate that I am becoming cynical to this system. However I feel as though my heart and mind are in constant battle to be open minded, but this continued experience has taken the cake.
I hope I am pleasantly surprised and Getty is approved. I hope they make good on understanding that Getty and any SMA type 1 child is and will always a special circumstance case. That is my hope.
I just wish that once, just once, there was a circumstance that there was no fight involved with regards in Getty’s care. Once, just once, I wish a doctor could tell us something we didn’t already know. Just once would I appreciate a doctor tell us of upcoming and proactive opportunities for Getty. Oh I just wish. Perhaps that would remove so much heartache I feel after a situation like her evaluation. It is not a comfortable environment. It always feels like we need to be the one to prove our case.
Honestly I am tired. I just want to be Getty’s mommy. That is all I want to be. This dragon mother will do all I need to do to make this power chair happen with Mark’s help. But I have to be honest, I am pooped and deflated.
There are a few steps Mark and I will be doing to make this happen for Getty. We will never give up. We WILL get her a power chair. We WILL fight this situation. We WILL not let this drop. We WILL prevail.
This is a video of our amazing Getty. To set the scene. There was no command to go outside. Getty did this all by herself. All by herself. A three and half year old, beautiful little lady that has the ability to move a power chair in a small space and clear objects that she cannot even see, but from memory she knows where they lay. With caution and patience she finds her way outside.
And to Kaiser, sometimes awesome is just not good enough. We believe this is awesome. So, so incredibly awesome!