Special Needs Parenting....the Stories

I know I have talked about special needs parenting before. It is something I know well, and I was thinking today about some of the unusual and sometimes unkind situations that my family and I have been put in since becoming a special needs family.

Whether people realize it or not, there is much judgement out there of both the special needs child and also the parent. There is also a lot of misunderstanding about the child and how actions or inaction can cause life altering or even life endangering situations. There is also a lot of judgment and a huge lack of empathy when it comes to situations that make people unhappy or uncomfortable. Here are just a few of our stories.

When David was born, he was premature and I was told by every doctor, nurse and therapist that cared for David that his birth and his consequential health issues from his birth, were in no way my fault. I had had very good prenatal care, I never drank or smoked and I took care of myself during my pregnancy, some how though, the placenta decided to detach from the uterine wall which put both my son and I in danger of death. The doctors had no choice and we had no choice as parents, but to bring my son into this world 13 weeks early.

As a parent, you can't help but feel responsible as you see a child barely 12 inches long and 2 pounds fighting for his life. We couldn't hold him, all we could do was watch and pray and yes....I wondered if I had done even one thing differently, would that have changed the outcome? Looking back now and knowing what I know now.....no, it would not have changed a thing. It just was what it was. At the time though, it was hard not to question and then within days he developed Candida of the blood and we almost lost him. Candida is a yeast infections that can make a full grown healthy person very sick, but in a medically beyond fragile infant, it is often deadly.

Again, I found myself racked with guilt as I worried that I might have passed the infection from my body to his. Had I eaten the wrong foods or done something that had caused yeast to build up in my body and thus given this horrible illness to him? I later found that the Candida was an unfortunate side effect of David's umbilical line. They had kept his umbilical line in longer than normal simply because they couldn't find another IV site that wouldn't blow.

Those first five months were harrowing.....the first three especially, but it didn't stop people from asking Tim and I, if I had done something to cause all of this during my pregnancy. It felt like pure and simple judgment and would always take me back to the "what ifs."

The judgment continued for us, when after David's time in the NICU, he was released on no medication, no oxygen and no feeding tube. He was given a clean bill of health and the doctors told us that his chronic issues with physical and mental development would remain to be seen. They  had a good idea that he would have CP, but at this stage, they had no idea how severe, so he went home like any other normal baby. Tim had taken a great deal of leave during David's hospital stay and work had cut him a lot of slack, but David was home, looking quite healthy and normal and the questions began with sly words and nasty comments made here and there about David not being as sick as we "claimed." After everything we had been through, that was tough.

After Tim died, the judgment was even more difficult and at times, peoples behaviors towards David and I was just down right vicious. I was now a single parent and that alone is a scary place with a special needs kid and people who knew me, knew that my kids were my life. I was also told from the get go, when David started school at 3 years of age, that I was his advocate and that I must stand up for him at all costs. When at 6, David had a school physical therapist who literally wrote David off and refused to work with him, his physical abilities started going down hill. After discussing this with his doctor, I then confronted the PT in his end of school year IEP. I was in no way hateful, but I was direct (as the school had taught me to be) and I  thought it was all taken care of, until one day coming home from David's  extended school year summer class, I was met with CPS. I had been called in as unfit because: David needed a haircut, he was still wearing a diaper and he had a sunburn. 

I was astounded that someone would call me in for this crap and scared too because I was a single mom with no backup. He indeed did need a haircut, but he always needed a haircut. His hair was thick and bushy, but it was always clean and combed and he hated haircuts. Yes, of course he was wearing a diaper. Apparently the "caller' did not tell CPS that he had CP and was incontinent and yes, he did have a sunburn. It wasn't bad, but it was the beginning of summer and he had been out in the pool. I had been putting Aloe on it and there was no blistering or peeling, just a little redness. Luckily David was there and she could see for herself how he looked. I explained that he had CP and I invited her in the house. She refused my offer and she said that it was obvious this was a harassment issue and nothing more. Of course she couldn't tell me who called but she said that she and CPS would not be bothering me again. I told no one because I was shook and embarrassed that someone felt that I wasn't taking good enough care of my child. The special needs mom guilt was really working overtime.  A few days later I got a call from an unidentified caller who simply said that the school PT was the one who had turned me in. She was angry that I had called her out in front of everyone at the IEP meeting and this was her payback. Unbelievable and I knew it had to be true because I had told no one about the visit.

Sadly, that was not the only time this happened. I was working in a place where I really liked the job, but the boss was an active alcoholic and ran an administrative team with a high school clique mentality. Let me just add in here, that that place was suppose to work for the benefit of kids. One day, I respectfully stood up to the boss and the team. I did it with no ulterior motive other than just doing my job. After that, one of my kids got sick and had to go to Children's Mercy in KC. We were there two weeks and both my job and both kids schools knew where we were and why we were there. My job definitely knew because I kept in daily contact. Once back home, I was once again met with a CPS worker at my front door asking me where my kids had been and why they hadn't been in school. Again....I was caught off guard. This time I insisted they come into my house, check  everything out and then I gave them the numbers of the kids schools and my job and I made sure they called the schools to verify what I told them. I also gave them the number of my sons doctor and the number to Children's Mercy to verify that too. Finally, I gave them full permission to go to both kids schools and check on their welfare. Once again, the CPS worker seemed embarrassed and called it a "harassment" call and said that all was well and the case would be dropped. The next day I went to work and was talking to a co-worker who went ashen when I told her about the visit. She then told me that it was the boss and her minions that had turned me in. I quit that day.

People either don't realize or simply don't care the damage that they could do by playing games with the system and with families like this. First of all, these types of unwarranted calls are why the system is so jammed up and the CPS workers can't focus on the REAL cases. This is why so many kids fall through the cracks. Second, David is non-verbal and if one of these case workers would have decided to investigate or take David from my home, he would have been a prime target for abuse. It would also have terrified him as he had only ever know his home and his family. These antics could have put my child in danger and destroyed my family and yet all these people could do is somehow think this was how they handle a situation when someone doesn't agree with them.

Special needs parenting is tough on the easiest day. We are constantly fighting with insurance, doctors, schools and service agencies. We are running to doctors, therapies and evaluations. We are caregivers, teachers and advocates for our children who often times will be under our roof and in our care for the rest of our lives. We spend time in hospitals, doctors offices and schools all for our special needs child. We go to bed tired and we wake up tired, so when others who have no understanding of our situation or our lives judge us, talk about us or cause us extra issues and put our families in jeopardy, it all gets to be a bit much. We become fighters and we become a force to be reckoned with when it comes to our child and his/her needs and because of this, sometimes when you mess with us, you get an ugly outcome.

I could go on and on with story after story, but if you take anything away from this, please let it be that we as special needs parents are human. Don't judge us because you don't understand our lives and don't complicate our lives unnecessarily because you may not like how we do or say something. Just love us if you can and if you can't.....then keep on walking. We will understand.

Until next time........

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!