As a special needs parent, I have found that I have to constantly reevaluate my priorities. These priorities are an ever changing, ever shifting, blurry lined moving target. I have said this before, and I doubt that I coined this phrase but, if everything is a priority than nothing really is. This rings so true my life right now and it has me very frustrated and overwhelmed. I’m being pulled is far to many different directions to actually accomplish any one thing.
In my life, I have 3 boys and my wife. All are absolutely amazing but they all have special needs. Some are more serious than others but all important nonetheless. I’m struggling to keep our boat from being capsized in the ocean of ever increasing and destabilizing waves of priorities, brought on by these very unique and very special needs. It’s a constant, daily struggle to find balance and maintain buoyancy. If I fail than we could all drown in this vast ocean of priorities. No pressure…right?
I can grab a piece of paper and make a list of everything that needs attention. That’s an easy, if not, lengthy process but it’s doable. The problem is that I can’t seem to prioritize the items on this list. There are so many vitally important things that need addressed or that need my undivided attention.
Lizze’s, health is failing. She is basically..existing. For her, everyday is worse than the day before. She is in constant, debilitating pain each and every day. She has migraines that last anywhere from days to months at a time. Already, most of her day is spent asleep and with her history of blood clots that a pretty big risk. The pain is so bad that she has a hard time keeping food down at times. Should she be the priority?
Gavin has a progressive, degenerative neurological disease. We have exhaustively pursued help and or treatment but no one has ever seen anything like this before and so we are left without any answers. So far this year, he has lost his reflexes and ability to move his tongue in an upward motion, resulting in speech regression (See: The CDD Journey). This doesn’t include his loss of coordination and cognitive ability. His grades are significantly falling as well. We discovered a few months ago that Gavin essentially has no immune system and requires monthly antibody infusions (See: Antibody Infusion). This should be a priority..no?
Elliott is an emotional mess. His anxiety is through the roof. He has nightmares all the time and was once again, up most of the night last night. He’s like a really old and unstable stick of emotional dynamite. Looking at him wrong can have him in tears or screaming at the top of his lungs. It’s affecting him at school now as well. I truly believe that he is a victim of his circumstance, meaning that he is being asked to cope with things that he simply doesn’t have the resources for and it’s finally taking its toll. Elliott deserves to be a priority..right?
Emmett…where to start.. Emmett has a severe speech and language delay. He is also a sensory nightmare to the point that he exists in his underpants because he cannot tolerate clothes(See: Can You Understand?). We are about to embark in a battle with the public school system over Emmett. We recently pulled him from preschool because of mistreatment and grossly inadequate IEP. This stems from the schools unwillingness to recognize PDD-NOS or Autism Spectrum Disorder as Autism in his ETR. So the IEP, at this point is a total waste of the paper it’s printed on. Emmett needs services that the school will not provide for him and were actually punishing him for not being able to sit still in his chair or in circle time. He’s 3 years old and Autistic..they should be helping him with these challenges not penalizing him for them. We pulled him out of class until these issues are resolved. He desperately needs appropriate, social interaction with peers his own age. This will be a challenging battle but one, I fear is inevitable. This is extremely important but is this a top priority?
How we have some unrelated be equally important issues as well. We have to move. It’s not physically safe for us to stay in this neighborhood anymore. In the past 4 weeks alone we have had violence spilling into our neighborhood in increasing amounts. There was a double shooting and a stabbing, where the stabbing victim ended up in the street in front of our house, with me holding his intestines in with my hands. Two people ended up dying from the injuries received that night, both rules homicides (See: Senseless). A few nights ago we were involved in a drive-by shooting (See: I can’t stop shaking). I truly thought I was going to die that night. I came home last night from the store and a car was slowly driving down the street blasting music. Before I realized what I was doing I had dropped to the ground to hide behind the van while I was unloading it. Lizze is having panic attacks and Emmett witnessed my near death experience the other night as well. Elliott watched out his windows as I was trying to save the life of the stabbing victim last month and while he could see what was actually happening, he knows that what did happen was bad. If we are physically safe than what does anything else matter? Moving has to be a priority but is it really more important than anything else?
The above are just a few example of the most important things on the list right now. I still contend with the typical things like bills and other financial concerns that also warrant a spot on that list of priorities as well but aren’t necessarily life and death type things. The van we bought last year is an absolute money pit. We literally fix one thing only to have something else go wrong. In the past year we have put at least $4-$5,000 worth of absolutely necessary repairs into this van only to have it still not work right and stall out.
We have countless other things that need to be addressed as well but end up falling to the wayside.
What am I supposed to do?
There are far to many things happening that need addressed to even know where to start. Much like the leaves that are falling from the trees in my yard right now, as soon as begin to make progress more problems or issues are falling into our lives faster than I can keep up with them. It’s overwhelming to say the very least. I literally don’t know what to do.
The kids are our absolute priority but at the same time, in many ways I have become a single parent due to Lizze’s health problems. If we could improve the quality of her life than she would be in a better position to help shoulder the load and daily demands that we face as special needs parents. However, at the same time, Gavin’s condition is very serious and we don’t know what it actually is, how far it will progress and if it can be slowed or somehow stopped. We don’t know what his condition will be like next week or next month, let alone next year. He could very well end up in a wheel chair or requiring assistance to breathe. We simply don’t know how far this will progress but knowing what we already know keeps up up at nights..
Where to Emmett and Elliott fit in? Nothing they are facing is really life threatening, we do know that the intervention they receive or don’t receive now can dramatically impact their futures. That is something that has to be considered as well.
As a paramedic, I learned to treat the immediate life threats because if the patient died than nothing else mattered. I had tried to apply that process here but it’s just not that simple. I’m basically faced with having to look at my wife and kids, all suffering in their own unique way, some physically and some emotionally and decide who is the most important. How am I supposed to do that?
They all deserve my attention and they all deserve to be the priority but at the same time, if they are all the priority, then none of them are. Does that make sense?
What about preserving the health of the healthy? Should I pour my efforts into the person who is likely to benefit the most? If so, how do I define benefit?
The other problem is that no matter what I decide to do, it will require every second of my time and every ounce of my energy. This means that everything else will be once again put on hold. If that’s true, which it is, then how can I keep us financially afloat? How can I find the time to try to figure out how to relocate my family? Hell, I already can’t even keep up with the laundry, dishes and other household chores that are required to keep us at a functioning level.
To me, this is like one of those nightmares that I can’t wake up from. I feel like I have to choose between my wife and children, I can’t seem to help them all.
On a more personal and perhaps even selfish note, what about me? When do I take care of myself? Should I make myself a priority? When I was a paramedic, I was taught that the safety of myself and my partner was my absolute top priority. This is because, if something happened to me or my partner then we couldn’t be there to help anyone. Again, I just can’t seem to apply that same logic here.
That would require me to address my needs before the needs of my family and I don’t know how to do that. Logically, I suppose it makes sense but in practice it feels wrong and I can’t seem to do it.
I am completely overwhelmed, exhausted and without a sense of direction. I just don’t know what to do….