I Am Still Me!

Special needs parenting. Yes....it is rewarding and somewhat awe inspiring to know that God chose you as the parent of your child, but to be completely honest, it is also hard! No not just hard, it is really really hard.

Since David was born I have had people come up to me and say, "Wow! I just don't know how you do it. You are amazing." I always cringe at the word "amazing" in accordance with my parenting skills, but my pat answer to this remark is always, "You do what you gotta do." Truthfully though, I don't know how I do it either. It is constantly learning, fighting, arguing, researching.....and did I say learning, fighting, arguing, researching? Most of all it can be just plain old exhausting.

All new parents are on a learning curve, but being the parent of a special needs child, especially one with extreme issues is off the charts scary. Information either comes at you fast and furious or it doesn't come at all. It is an endless stream of red tape, phone calls and entities in which one hand does not know what the other hand is doing. Before I became Davids mom, I was pretty mild mannered. I held doctors in high esteem and would never have thought to question one and the thought of fighting with an insurance company, social security, lawyers, schools or anyone else was so far out of my comfort zone that it was unimaginable. Having a child with special needs though, changes all of that. You learn right off the bat that your child is different and all the politically correct BS in the world is not going to change the fact that in the eyes of just about everyone (often times this includes family) your child is viewed differently. If like David your child is non-verbal and yet noisy, awkward to the world with touch and movement(David does not view himself in the least bit awkward, but others often do) or just the fact that he has adaptive equipment such as a wheelchair, orthotics and a walker.....then he is seen differently. People are uncomfortable, awkward and sometimes in their great efforts to be PC are incredibly offensive. It all just simply comes with the territory. Special needs parents know this and take it in stride. 

Depending on your child's diagnosis you can be looking at years or even a lifetime of uphill battles and well meaning people....which I guess is to be expected and something that most doctors, social workers, etc can tell you straight out of the gate. What they don't tell you though is all the hours you will spend trying to defy the diagnosis or how many hours you will spend researching doctors, therapies, insurance, equipment and schools. You aren't warned about the "new" issues that can occur in an already health compromised child. And....if you are doing this as a single parent, they certainly don't tell you how many sleepless nights you will have listening to your child sleep waiting to hear that one sound that isn't quite right that can mean the onset of a seizure.... or worse. You aren't warned about how many times the mild mannered you will have to pull up her big girl panties and go to war with school administrators, doctors or agency's that are suppose to have your child's back but don't. No one tells you how many hours of how many days of your life you will spend on the phone holding to talk to someone.....anyone who can give you answers about your child's health, insurance, equipment or therapies. And although the second your child starts to school you will be told that YOU are your child's voice and their greatest advocate, you have no idea how many times that you will be ignored or how hard you will have to fight to have that voice heard. 

What you aren't told is that it doesn't matter how many kids you have had previously, nothing prepares you for a special needs child. It is as if you are starting fresh and you never knew anything where parenting is concerned before this child. Everything from holding and feeding your child to changing your child can be different and even life altering if done incorrectly. Everything is different and everything is scary. Milestones are different too. What you take for granted in your other children....holding up their head, rolling over, holding their bottle, sitting up, crawling, talking, walking, etc suddenly becomes questionable. Some or all of those milestones are not met on time and truthfully may never be met. If you are honest, those milestones become incredibly important and if they are met, are celebrated with a joy that you never before understood. You simply take nothing for granted anymore.

Along with the extreme praise people tend to pour on you for somehow doing the miraculous and living life along with taking care of a special child, you also are hit with a great deal of judgement. Some people seem to think that cerebral palsy, autism or downs syndrome are somehow caused by the parent. I have been asked up front by "well meaning" people if I drank, smoked or did drugs while pregnant with David. The answer is a resounding "No!" In fact, I got excellent medical care, followed my doctors orders strictly and took care of myself. After all....I was no stranger to having kids. David was born prematurely due to a placenta previa which simply just happened. His resulting health issues were all due to his being born at 27 weeks instead of the normal 40 weeks. People though seem to think that somehow I must have done something to cause it. What I have come to accept is that people are going to think what they think. I just don't have the time to worry about it.

I have also been judged quite harshly for not working outside the home and holding down a job since money or lack thereof is always an issue. After all.....I have a special child who lets be honest.....is not cheap and yet I "choose" to stay home. If only people knew or at the very least took the time to understand. We live on a fixed income, never go out, never eat out and never have extra's not because that is my choice but because that is my reality.  Our income goes to utilities bills that are too high, a house that is 50+ years old and is falling apart and food and if there is anything left over at the end of the month.....it goes to whatever David needs and David always needs something. 

To be honest, I have held several jobs during Davids life and I was pretty darn good at all of them. The problem though was that when David has an issue, whether it is related to his shunt or his seizures or any aspect of his health, it is immediate and often times.....life threatening. This means no matter what I am doing, I have to drop everything and go. It is a rare employer that can have an employee do this....regardless of how good the employee is. Some of Davids health issues have required hospital stays or round the clock observation and in my world, David always comes first. So with the exception of a business that closed, I have been let go of my other jobs because my life and my job were simply not compatible. Even though it seems futile though, I have still searched for the occasional job hoping that I might find that elusive employer who would let me work from home, the hospital or wherever I was, but instead I have been deemed "unemployable" by most. This means that added to the stress of raising a special child, there is also financial stress. ALWAYS financial stress. 

Finally, I have been told that I am no fun. Many of my friends have given up on me as they are all at an age where their kids are grown or at least old enough to take care of themselves, so they are free to go to dinner, go to movies or have a Saturday night out with the girls. I almost never am. Other than school, I am David's 24/7 caretaker. I of course could go through the red tape and get respite care, but not without paying a 1/3 of our monthly income every month. Trust me I have been down that road and hit a brick wall every time. And unlike a parent with other kids, I can't just call the teenage neighbor girl over to watch him, as he takes specialized care. So needless to say, I don't go anywhere. I have been labeled no fun and my friends have just given up asking me to go anywhere as they know my answer is almost always an "I'm sorry but I can't." Try as they might....they simply can't understand and I am tired of explaining. My world is just so different than theirs. 

Okay....so what am I saying here? I am speaking the truth. I love David more than anyone can ever know. David has taught me so much about myself, about life and about the person I want to be. I am blessed to be his mother and everyday I do thank God that He chose me for David. That being said, being the parent of a special needs child is as I said before.....really really hard. It is a hard that only another special needs parent can know and understand. So where does that leave the rest of the people in my world? You can accept that while you may sympathize with my life, that you will never truly understand what my days are like....and that is okay. I am not a fan of sympathy and I understand that you simply can't. Just don't judge me when my hair is uncombed and I am without makeup after David has pulled an all-nighter with stemming and yelling out. Don't assume that I don't work outside the home because I don't want to and please don't make me the friend pariah because I am not free to go out and play. I still need friends....because somewhere deep inside....I am still me!

A New Year....A New David Blog!

Yes, I know....it has been eons since there was a David update. My bad. No truly.....my bad! I have redirected my efforts on life and because of that, blogging was kind of left out in the cold. I hope to be better in 2017, but I make no promises as I plan on being very busy off-line...so we shall see.

So what is David up to? Well, he is nearly as tall as I am. By most human standards, I am short but for David, he has grown leaps and bounds. He turned 16 in September and he started to school four days per week at the high school back in August. This was extraordinary, as if you remember last school year, Davids seizures were getting a little out of control and scary and he had to be taken out of school for several months. When he did go back in February 2016, he went back to a four day schedule, taking Friday's off as that was his therapy day at Heartspring.

Through the summer, David gained a lot of strength and his seizures became almost non-existent. His meds and his vagal nerve stimulator (VNS) were keeping them well controlled. He was also getting much stronger with his walker and his bike. It was the first time in many years that we were able to feel some kind of normal as a family.

When school started in August, God was obviously answering prayers as we were blessed with the most amazing teacher for David. She actively volunteered to go to his out of school physical therapy both during the summer and during school. She attentively listened to everything his PT (physical therapist) said and went back to school and implemented every detail into his school life. Because of this, David went from being mostly wheelchair bound during school to walking most of his day with his walker and without wheelchair assistance.

This school year has been one of the best David has ever had. Until November, he had missed almost no school and was doing absolutely wonderful. In November and December, he had a few seizure issues (mostly from a growth spurt and out growing the therapeutic levels of his meds) and he caught a couple of bugs that were running around the school, but all in all.....his first semester was nothing short of a miracle as far as school years go.

One thing that both was amazing and terrifying all at once for me,  was the fact that in December, his PT told us that December would be his last PT for awhile. When she told me, I could literally feel my heart almost stop. I had no idea how much "I" had emotionally come to rely on his weekly therapy with her and how much she had become my compass on how he was doing physically and how I was doing as his mother. Sound silly? Trust me, when you have a special needs child, you get your reassurance whenever and wherever you can. Although his no longer going to PT (for awhile anyway) felt like a gut punch to me, for him it was an amazing thing. This meant that all of the goals she had set for him....he had met. As she explained it to me while I hyperventilated.....he had gone as far as he could at his current strength level. In order for insurance not to come in and control his therapy now that he had met his goals, she was voluntarily backing off his therapy so that if for some reason he had a set back, he could get right back in. However, if she didn't back off now, insurance would likely mandate that he couldn't be seen again for a year and if he would happen to need PT in that year....he would be out of luck. This way too, we have a whole new semester (few months) to work on his strength both at home and at school. As his strength grows and at the rate he is going....by May or June he can be re-evaluated and if he is ready, a whole new set of goals can be set such as climbing stairs, standing up with the help of only one hand or even possibly taking steps on his own without walker assistance. Then he can return to PT.

I know it is an amazing thing that he has made it so far and continues to progress, but looking at this new year without regular, weekly PT is still a bit terrifying to me. She assured me however, that I can handle this. I hope she is right...and because we will not be going to PT on Fridays....David will now be back in school on a Monday through Friday schedule. Routine is a wonderful thing for him, but I have to admit that I will miss our late mornings on Fridays and not feeling rushed to be out the door. However....it is a small price to pay to see David happy, healthy and progressing.

Christmas break has been a good one this year. As usual we have all passed multiple bugs back and forth and because our house has been fuller this year than normal, there seem to have been more bugs than ever before, but through it all, David has stayed pretty healthy.

Now that the new year is here, my work is really laid out for me. Since we won't have weekly PT, we have much that must be done to strengthen him both at home and at school. He will actually go from 1 hour once a week to at least 30 minutes every day. He will have to keep up with his walking and it was even suggested that with some of the strengthening he needs both upper and lower body, that perhaps I look into a gym membership for him. We will see if that is even possible.

Yes, I am feeling a bit overwhelmed but in our world right now, things are fine. We are blessed to have all that we have and David continues to be a trouper, fighting a condition every day that would crumble even the strongest of most of us.

So there you have it. We are starting the new year on a positive note and hope to maintain the boring monotony that is currently our lives for a long time to come. And perhaps....this all will give me a little more time for writing the occasional update more often. Who knows....only time will tell.