Parents Offer Outlandish Secrets On Caring For Child With Special Needs Through A Blog?
Posted by Dan at June 20th, 2014
October 10, 2012
It’s been 6 months since our new baby child with special needs was born and remembering back on the days in the hospital still gives me an overwhelming feeling.
When our new baby son Calvin was born we were in for a big surprise… we learned he was born with no eyes, was 100% deaf, is unable to feed by mouth, small corpus callosum in his brain, and has multiple other symptoms we still are discovering that are all related to a very rare yet newly discovered genetic defect called Sox2 Anophthalmia.
The next month (with Calvin ) still in the Neo-Natal Intensive care unit was an overwhelming experience as a whirlwind of doctors, fellows, nurses, specialists and geneticists visited us at the NICU where Calvin was taken right after birth. We had so many questions and so did they. It was an exhausting time.
Due to the fact that this syndrome is so rare – doctors couldn’t give us any straight answers.
I remember being in the room and it was non-stop people coming in and out of the room but no one could answer any of our questions on what was being done for him or what they needed to do.
I had set up with the palliative care nurse (who was our single point of contact at the time) a “care conference” where the doctors and specialists would meet in a room to discuss Calvin’s case as I began to feel none of them were discussing the case amongst themselves which lead to gaps between his care. Each one seemed to only “specialize” and wouldn’t touch anything outside of what they did. It was sad in a way.
For example I found out that the “Ear, Nose and Throat” doctor doesn’t handle swallowing and aspiration. This is done by 2 other specialist doctors. I felt many were subliminally saying “That’s not my job… try someone else” and passed the “buck”.
At the “Care Conference” Only 3 primary doctors/specialists showed up out of (I think) 12 at the time. I was a bit disappointed.
I thought to myself, “What kind of care should I expect from Children’s Hospital – one of the top facilities in the U.S. if none of primary doctors show up to discuss a patient’s case???” It didn’t sit well with me and I found it unprofessional. We didn’t even get any apologies. Many didn’t even return our Nurses calls to try and schedule something.
Now I know what you might be saying, “They are probably busy caring for others”. And yes I understood that and had no problems if they couldn’t make the meeting. But to never get back to us to reschedule is unacceptable – especially when they are contacted more than one time about the meeting.
A few thoughts ran through my mind…. One was I almost felt like grabbing them all by the ear and physically sitting them all down in a room like children, locking the door and saying “You all need to listen and get along…” But what would this accomplish?
It really felt like I was in a place where no one really knew much or cared except most of the nurses. Maybe this was so rare the doctors didn’t want to appear to not know something. After all – their job is to sound reassuring in their diagnosis and care, right?
We ended up using what we learned to our advantage and had the nurses keep us up to date.
One nurse was really helpful and put together a document listing what was done for our son, when it was done, and future cares (including who did it). This was a big step that I wish I would have known weeks prior.
6 months later … it still is a big adjustment to get used to having a child with special needs. Once Calvin actually came home from the hospital about a month and a half after birth we still were at Children’s Hospital 1 to 2 times per week on a good week, other times he was admitted to the hospital for long stays that lasted anywhere from a week to over a month.
With our son having to visit the hospital for long periods it became difficult to find sitters for our two other daughters (2 years and 4 years old), and drive back and forth 45 minutes each day, worrying about what was wrong with our son, and struggling to pay for things – even simple things like gas, equipment he needed but wasn’t covered by insurance and so much more.
It really didn’t help that our son had a genetic disorder that is fairly new and each person they found with this disorder had different symptoms. The best answers we had was “…anything along the spinal cord could be affected…”. Which was in my opinion their way of saying they don’t know what to expect.
Our child with special needs started to become overwhelming. His medication list was over a couple dozen or so and every 1 to 2 hours we had to give medications, other treatments, or had to clean him up and keep him from choking since he often vomited throughout the day (sometimes it was almost every hour for days).
Every month and a half he would be back at Children’s Hospital for weeks to over 30 days each time with some kind of illness or pain.
We are rarely getting sleep. I find myself angry or frustrated at even the smallest things lately. We have to take shifts to care for our son and in the mean time try to give our daughters attention too (and work to keep my job).
Our 4 year old is getting scared that mommy and daddy will get sick like Calvin and be in the hospital too. We reassure her we are not going to get sick, although in the back of my mind I know we are far from OK.
We have been asking almost weekly for help to have a nurse or someone here to help us especially at night.
Our biggest fear is our son choking on his vomit when we are asleep. No one has an answer at Children’s hospital, or the hospitals social service person. Online I haven’t found anything either. I don’t understand why no one knows how to get us help.
It is hard to find even a sitter for an hour to watch Calvin during the day sometimes for us to take a break or rest. Many people are afraid they might do something wrong.
They mean well, but they see all his equipment and everything that we have to do daily that they become very afraid.
Thankfully on occasion we have received blessings by people to help a few hours. I can’t tell you how much this means! Those of you that took our girls for the day or watched Calvin when we needed to grocery shop or even do some laundry. We can’t even begin to show you how much you really did for us. Thank you everyone. Thank you to those who brought over food when we were at the hospital.
UPDATE: June, 20, 2014
I noticed I hadn’t posted my “Child with Special Needs” October blog. So I posted it today.
Looking back – I don’t know how we survived other than a really good sense of humor.
About 2 months ago sometime in April we finally received an in-home nurse. Our first attempt (which we found through a new social services person at Children’s Hospital) was denied.
Our second attempt came accidentally but this was a breakthrough.
I had questions on our medicaid paperwork (thankfully we got this as this too was denied at first through social security. < We had to use Katie Beckett since we apparently made too much money???? really?? >
So I made the call to the Katie Beckett office and talked to a very nice lady – I wish I remembered her name – She was able to help me get the paperwork in without any problems.
And then it happened, she asked if she could help with anything else and I told her we were denied for hospice care for our son.
Her voice got really quiet as if to whisper…
“You need to apply for nursing care not hospice care… “they” are very strict on wording… I would suggest you contact a company that would provide the nursing care and have them help you fill out the application…”
WOW! I couldn’t believe after all this time this is what we needed to do. Thank you Katie Beckett representative! You are a savior!!!!
We did exactly what she said and low and behold a few months later after a “review” process by the state we were given nursing care (with a catch) “temporarily with further review”
Seriously??? Somehow our son’s full-time care was “borderline” for medical care.
The poor boy is on oxygen 24/7 , has life threatening ailments, has to have treatments/medictions/and special care every hour for 24 hours a day (We have a special 3 foot by 4 foot whiteboard in our kitchen to keep track of all his medications & the times they are given.) And did I mention every month these medications, dosages, and other treatments change? For over 2 years now we have yet to have a normal schedule. Sorry – I got caught up in the moment.
Honestly with all that is going on – our child with special needs is loved deeply by us and everyone that meets him. He is a blessing. So for those of you our there that may be reading this that are maybe new to a special needs child. Don’t give up on them. I won’t say anything ridiculous like “God chose you… ” blah blah blah. We heard that so many times it started to get annoying!
Your child with special needs is very special.
What I will say is … Your child with special needs is very special. One day they may change the world in ways we cannot. Maybe because of who they are and the differences about them – may change one thing for one person that will be a blessing for them. Or maybe, just maybe they lead the world in a dramatic change for something good that might even include you!
It may not be easy… I know first hand on that… but it will be fulfilling if you let them into your heart.
My son may not be able to see, hear, lift his head or body up, eat by mouth or do anything a normal 2 year old can… but he is my son and he makes me happy when I am holding him and make him laugh.
It’s simple things like this that make all the difference.
Back to the nursing situation We are thankful we got nursing help… In fact;
The nurses we get all can’t believe how we cared for our son on our own. I remember one nurse saying, “(Calvin) is a full-time job with all his cares, how were you able to do this for as long as you did… with 2 other children?”
What I learned is you just have to keep surviving even in the toughest times.
Keep a sense of humor of it all (even when others think you are insensitive because of your humor) believe me – you need to keep a good sense of humor of it all. Otherwise you will give in to depression and despair. I am not saying that you won’t feel pain, depression, despair, and other negative thoughts. It is the fact that you move on and push those feelings aside. They won’t help you.. it only makes things worse when you give in to those types of feelings.
Parents advice: “KEEP A SENSE OF HUMOR OF IT ALL…”
There is so much more to tell but I must go for now. Hopefully I won’t wait so ling for my next post to be published.
Category: News & Updates on Calvin