Behind the Scenes of Special Needs

Do you ever have a day that you have planned out in your head....and before your feet hit the floor the whole day has turned inside out and NOTHING is as you planned? That is today for me. While I do fly by the seat of my pants most days....when I do plan something, I hate it when things fall apart. It makes for a very unpleasant me. Today is one of those days. Both dogs and kids have seen a not so pretty side of me this morning. No....today has not been one of my finer moments. Although my day is jam packed with things I need to do and should be doing as we speak....I thought it better to take a few moments and decompress and what better way to do it than to blog. Again....something I wasn't planning to do today!

Part of my problem I know is anxiety. Ever so often it gets the best of me. Why? David. Most of the time when I write on this blog I am either updating you or giving you history. It is always about David, but I am not sure that I ever have talked much about the other piece to this life puzzle....Davids family.

When you have a special needs child...the first thing that goes through your mind when you are hearing diagnosis and prognosis is a complete and utter shut down. Especially if you have already had other children with no issues. How do you process this new found situation? Most of us I don't think do at first. We listen to what we can hear and then we process the info little bits at a time.

It is impossible to look at your child and not see perfection....even in the worst circumstances, and as they grow...a new norm sets in. You forget what your other kids did at that age and just celebrate what this one is doing on any given day. Normal milestones leave your mind completely. You are simply grateful for even the smallest events......especially if you were told they might never happen.

With David....we were beyond lucky as his health outside his developmental delays was very good. He did have his share of colds, ear infections and such....but no complications or diagnosis related issues. He was on no medicine, he was a happy child and it was easy to forget that there was anything wrong with him. He was simply David and we all loved and adored him. He could make the worst day turn around just by seeing his smile or hearing him laugh. I found myself and my other kids living in a dreamworld of our own creation where David was concerned. In our eyes he was/is perfection and there was nothing that he couldn't accomplish if he wanted to. It was because of this dreamworld that I dreaded the yearly IEP the school had for him. For those of you who do not know....IEP's are meetings the school holds where principal, teachers, therapists, parents and any other people who deal with your child's at school health or education come to. You sit around and hear from each person present on how they feel David is doing and goals are set up for him to accomplish before the next IEP. Regardless what is said at these meetings.....I always leave feeling deflated. It is a wake up call to the fact that regardless what myself or my kids think about David's health and progress.....the fact is.....he is special needs! He is different than mainstream kids....and I hate it. I hate the label, the stereotype and the fact that even though these people spend more time during the day with him than I do.....they still see my child as somehow defective and less than everyone else. I hate that they isolate him most of his day from mainstream kids and that sooner or later....he will start to see himself as different and maybe even less than others. It breaks my heart.

When David was 8, I was given another wake up call that David had issues that most other kids did not. This was when he had his first seizure. It was terrifying to me. Again....I had no way of processing this at first. I cried. I panicked and I felt very alone. Most of all though....I worried for David and his future. It took well over a year before the doctor could convince me that David would likely be fine and might even grow out of seizures eventually. Until that time....they could be controlled by meds. The trick was to get the right combination of meds on board to do the trick. That took a bit longer than a year....but eventually we hit the jackpot. The only problem was that with every growth spurt and every hormonal change....the meds also needed changed. This usually meant going through at least a week of seizures and then blood work to find out his levels and then another week of allowing the new dosage of meds to work. It has been a vicious cycle and one that has ended him up in the ER and even the hospital more than once.

Through this all....I worry. I cry. My other kids worry. While as the doctor has told us time and again that his seizures (the kind he has anyway) have little chance of damaging him permanently or killing him....the fact is that in the back of all our minds, we all deal with the constant worry of having a life without David. It is unthinkable. David is a very strong glue that keeps us all centered and holds our family together. Especially his mother.

My scariest moments have been when I knew there was a chance I would not be walking out of the ER or hospital with David. There have only been a handful, but each time my mind quits functioning. At least to me it does. I go into this auto pilot mode and force myself to be as present as possible....the whole time inwardly I can feel pieces of my heart breaking away. The first time outside the NICU that this happened was when his shunt malfunctioned. David has a shunt that constantly drains fluid from his brain into his abdomen because he is hydrocephalic. If the shunt malfunctions or stops working for any reason...then the fluid can build up and cause brain damage and death. Some kids with shunts have to have them replaced often, miraculously David has only had to have his replaced once....but there is every likelihood that he will have to have another replacement in the near future. When a shunt malfunctions.....they become deathly ill. They are listless, often run a high fever and throw up. The day Davids failed....I had no idea what was going on.....I just knew he was dying. God hears from me loudly and repeatedly on days like that. Once diagnosed and taken in for immediate surgery.....he was the old David before he was even out of recovery. The combination of relief, gratitude and anger after it is all done is quite an emotional load. Yes...I said anger, because I always am angry after a scare. No...not at God or David, but at reality....because once again my dreamworld is shattered and I am angry that I have to keep facing all of this alone. Selfish...right?!

David has given me this scare several times with seizures and then again last spring after he had surgery at Shriners. Hearing that he came within a half hour of dying and being 500 miles away from home and being basically alone, brings on a whole new set of anger issues. Those things don't die easily and knowing that he has yet another surgery in his future keeps me up more nights than I like to admit.

We have now hit the teen years. While puberty was onset early by meds he was given in the NICU.....his hormones have really set in. We had the VNS (vagal nerve stimulator) implanted back in September to help regulate his seizures inwardly and also with the hopes he could come off all or at the very least some of his seizure meds. While seizures have been few and far between.....they are obviously underlying. A month ago we began weening him from one of his medications. When I started the second phase of the cutback....the school began seeing more aggression. While usually we don't see as much at home because home is less structured....we even saw some here with the addition of a loss of appetite. NEVER unless he is sick has he had a loss of appetite, but he was not acting sick. Frustrated I called the doctor who said they likely needed to adjust the VNS, but until then....we needed to take him back to full strength meds. We did. I question everything though. Is the aggression hormonal or seizure related? Is his loss of appetite hormonal, seizure related, med related or is something else going on? Is he getting sick or is his shunt starting to malfunction? My mind is in constant turmoil and it is harder and harder to find my happy place in my dreamworld.

This morning it kind of hit me all the way around. Nothing with David is easy anymore. All of the changes in insurance are about to drive me to drink and just when I think I have it all settled...I find out that there is new paperwork to fill out and new questions to answer....even though I have already answered the exact same questions and less and less of what he needs are going to be covered. It doesn't help that I also have family who are trying to push me into putting David into a home if not now then at least after he graduates (they sadlyhave always seen him as a burden). And finally after talking to other parents at Davids school....I am starting to question if he might need to go elsewhere(another school) in the future. 

I have a vision in my mind of the future. Of course none of us knows what the future holds...but we wouldn't be human if we didn't dream and didn't plan. Of course if I were wealthy....life for all of us would be much different as would the future, but as things are....I just see David always being a blessing and always being my perfect David. It is hard to separate the dream from the reality but the reality is.....everything I do I do for the sake of David. Every insurance battle, every doctors visit and every trip to St. Louis are so that David can have the best life and the best future possible. It is stressful though and at times it is hard....really hard. It is harder still when I have those in my life that I don't always feel have David's best interest at heart and those (family members) who view both David and I as somehow less....him because of his issues and me because apparently I am somehow lacking as a mother.

Since David has come into my life....I have dealt with more hospitals, ER's and doctors than I have at any other time in my life. I have prayed my child back from the brink of death more times than I would like to think. I have fought with schools, social workers, therapists, doctors and insurance companies....not to mention my own family. I have been called names and insinuations have been made about me by people on the outside looking in who have no idea what life with a special needs child is like. And yes....I have shed many many tears. It can be exhausting.

The thing about David....and I am sure most special needs kids is the fact that there is never really any norm. You can never sit back and get comfortable with anything because if you blink your eyes.....things can change...and often not for the good. David has a shunt, a baclofen pump and a VNS and while all of these things are life supporting and make his day to day life easier.....at any moment they could turn life threatening. All are foreign objects in his body and any one could get infected. He could possibly have a life threatening seizure. His shunt could malfunction. All parents have worries about their kids and parents with special needs kids have all those same worries and many more you would never dream about. Some can be anticipated and others like many of the things we have already experienced....come out of left field and knock you for a loop. You have to process them and completely rethink everything you have ever known.....over and over again.

Okay....so this is the side of a special needs child that I rarely if ever talk about, and yet it is something that is with me 24/7. Granted....usually I push it all to the back of my mind and carry on, because lets face it....you can't live in crisis mode every hour of every day. Sadly though....my dreamworld has been taken over by reality more and more and those moments of ease and non-worry are less and less. With all this being said though and with everything I know now that I didn't know 12 1/2 years ago.....if I had it to do all over again.....I wouldn't miss a second. You will never know the joy and happiness David has brought to all our lives and quite honestly.....he has taught us all to love in a way that none of us ever imagined.

I guess maybe I am writing this not only as a way to help me process this day, but also to bring a little awareness to what goes on behind the scenes of a special needs child. If you see a special needs parent that looks tired.....you can bet.....they are tired. They have likely been dealing with doctors, hospitals, illness, insurance or a multitude of other issues you would never dream about. And don't forget....just because we have a special needs child...it doesn't make us exempt from having to deal with all the normal stuff life throws at us. It just means we have to buck up and deal with it ALL. If a special needs parent looks worried....they probably are. They likely are worried about an old health issue, a new health issue, not enough money to pay for everything, their other kids, having enough time to do it all and making sure that everyone gets everything they need. So if a special needs parent forgets to pack a lunch, puts the kids shoes on the wrong feet, doesn't get teeth brushed or doesn't get back with you immediately....it is not because they are lazy, forgetful, neglectful or ignoring you....it simply means that life is in hyper speed and they are juggling all they can with normal life and special needs life and.......it might be nice if you cut them some slack!