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........

Having and Helping a Child with Cerebral Palsy

One of the things I have been asked a lot over the years is, since I have a child with cerebral palsy, what I think is the most important thing a parent can do for the child's care so that they can thrive as much as possible. It's a great question and here are my thoughts.

First of all, let me say that CP is not a one size fits all illness. It effects different kids in different ways. Some it effects their upper extremities more, some their lower and some are equally effected all over. It weakens the muscles and either causes no tone or too much tone. Because of this, my recommendation to anyone who asks is, from the beginning get your child the best orthopedic specialist, the best neurologist and the best physical therapist you can find from day one. In some more remote areas, finding these top notch specialist may mean traveling and if that is the case, then I strongly suggest looking into a Shriner's Hospitals. Shriner's Hospitals are for kids and for specialty issues such as CP and the doctors at these hospitals are the best of the best. Shriner's also works with insurance if you have it, but if you don't, they foot the bill whether it is for therapy, examinations, surgeries, orthotics or anything that your child might need to give him/her the best outcome possible.

Let me stress to you that the sooner you get your CP child into a good ortho doc, the better. Immediately, even in infancy, they can start checking your child's tone, bones and movements and keep track of them as they progress through therapy, so if they find surgery to be necessary, they are on top of it. The second important thing....get in with a good PT as soon as possible. Even as a tiny baby, a physical therapist can start working with your child and help them to build muscle and work on their tone. Most PT's can now also cast children for orthotics and help provide them with any assistive equipment they need right from the start. Let's also not forget the neurologists part in all of this. Most CP kids do end up with some neurological deficits and like David, they have secondary issues to their CP, like Hydrocephalus and seizures. These require close follow ups with a neurologists. On down the line, the neurologists can also help with muscle issues too, such as Botox injections which help with tone and movement.

I can't emphasize  enough how important getting your CP child followed by these docs and working with a PT are. These will be key to how well your child progresses as they grow and how much mobility they have.

As your child goes to school, if it is a mainstream public school, you will find that most offer minimal therapies such as PT, OT(occupational therapy) and Speech as well as special education classes geared towards kids that are not in the mainstream. My suggestion here is that you seek therapies outside of the school district. Ideally, you can get a school PT that will work well with an outside PT, but seldom does this happen. One of the problems is that in a school setting, your child only gets about 15-20 minutes of PT every week to two weeks at school. This is not enough for a child that has severe issues and needs to be seen much more than this. If the school PT works with the outside PT, the outside PT usually sets up the therapy plan and the school PT makes sure that it is followed at the school level. In David's case, this didn't happen and we finally just went to outside PT. It has been a much better situation for him and he has become much more mobile since we have gone outside.

Another thing I feel that is so important is surgeries. I know that it is terrifying as a parent to think of your little one having surgery, especially if it is a long one with a long recovery period. Let me just say here though, that as scary as the knee and hip surgeries can be, the earlier they are done, the better chance your child has at moving around and even walking. We waited until David was 12 and that was almost too late. We didn't have a great ortho doc at the time and he didn't believe in surgery on kids unless it was a last resort. We finally found our way to Shriner's Hospital in St. Louis and from that day, David's life changed. His mobility would likely have been so much greater had he had surgery at 4 or 5 instead of at 12, however I am beyond grateful for the mobility that he does have.

Finally, let me say that any doctor or therapist you choose, should be a good fit for both your child and you. Do your homework and ask around. Other CP mom's in your area are a great resource for these kinds of things. If for any reason your child doesn't work well with a PT or you don't feel that your child is progressing well, it is not only your choice to change providers but also your duty to your child. The same goes for docs. If you or your child aren't comfortable with a doc or you don't feel like you are getting his or her best efforts with your child, then change. These docs and therapists are going to be with your child for a long time to come and you want the relationship to be one of confidence and trust.

Cerebral Palsy, though chronic, can be improved on greatly with the right therapies and the right medical professionals guiding your child's treatment. Every day new therapies, new medical advances and new possibilities are changing the lives of CP kids and their families all over the country.

When starting out as a CP parent, don't be afraid. Remember that from this day forward, you are your child's greatest resource and his or her greatest advocate. Never be afraid to question or change a doctor or therapist and when you find good ones.....listen, learn and soak up every bit of knowledge you can. This will give your CP kid the best chance for the greatest life possible. And that folks is my advice to you.

Until next time.......

Weak of Character, Big of Mouth....Don't Degrade My Son and Special Needs

This blog today is kind of difficult to write. It is difficult because it has to do with a subject that is neither happy, positive nor upbeat. Today's blog is about negativity towards the special needs population.

To begin with, in a time when people claim to be "anti-bullying", kind and loving, all you have to do is open up any form of social media and know that what people claim and how they act are often times two very distinctly different things. Sadly, in this day and age, we are so submerged in the muck of negativity, we are growing immune to it and forgetting that if we don't stand up and say something, we are just as much a part of the problem as those spouting the ignorance are. One of my favorite quotes is: "The only thing necessary for the triumph of evil is for good men to do nothing." Today, this quote could not have more meaning.

Now please don't get me wrong. I am not one of those who gets on social media and starts getting offended at every post I see. Honestly, I am the queen of scroll and ignore. Sometimes it is difficult but most of the time, I see ignorant, attention seeking trolls (not an insult but a term used for someone who gets on the internet and tries to be as obnoxious and insulting to anyone and everyone as possible) and I am so unimpressed, I wouldn't give their posts a second thought, let alone comment on it. Yesterday though, I was truly offended and I spoke up. Since my comments were met with disdain and personal insults, I am sure the attention seeking, internet troll in this guy far outweighed any true humanity he had.

So the story goes, a town just down the road has a Facebook page called the Complainers Club. It is basically a no holds barred page where no one is supposed to be banned and anything (yes absolutely anything) can be posted. I joined the page a while back because it is interesting to see how far people will actually go with that much leeway. I have been surprised though, there has been some fun banter, some hilarious posts and yes, some inappropriate and tasteless meme's, but for the most part, it has all been in good fun. Of course I am not on the page much so there could be a lot more that I don't see.

Last night I was scrolling and suddenly I saw a meme directed at special needs. The picture was not funny and in my humble opinion, the meme itself was degrading to any special needs child. How could someone see this as funny? How was it viewed acceptable by other human beings, that a grown adult would post something like this and others not only laugh at it, but also applaud it? Yes, that is where I drew the line and I did comment on how degrading it was. Of course I was met with, this page is for any and all memes and posts. Basically they were telling me to quit being offended. Hmmmm.....Well, it has always been my belief that the 1st Amendment was written with common sense in mind. In other words, just because you can say something doesn't always mean it is right, ethical or necessary to say it. When you resort to this kind of thing, it is pretty obvious that you have nothing intelligent to say and that your only purpose for posting is to be as degrading, inhumane and as much of a attention whore as possible. Well, this guy succeeded on all fronts.

I was respectful to him, although had he and I been face to face I might not have had the patience to hold my tongue as effectively as I did. But then again, I doubt he would have had the gumption to say the things he said to my face. The internet is a powerful fortress for those who are weak of character and big of mouth.

This gentleman then went on to tell me that he too had special needs family members and they thought it was funny. Really? Did they really think it was funny or are they just so used to being degraded by the likes of such a fellow that they don't know the difference? No, I think if he actually has special needs relatives, he is much different to them on the home front. My hope is that he is respectful, kind and caring because every special needs child deserves that. They have to take three extra hard steps for every easy step the rest of us take.

As a mom of a special needs child, I have watched my son fight his way through life and succeed. Every milestone and every moment has been not only something to rejoice over but also a miracle in its own right. When you have seen the pain, wiped away the tears and cheered him on through every surgery and still see such innocence and joy in him, it is more than I can do,  to simply set back and watch someone/anyone degrade him or anyone else with special needs in any way.

I was also chastised for labeling my son as special needs. I was amused. It is not an insult to be "special" in any way. It is merely a fact. My sons needs are special just as are millions of others in the world, whether they are born with chronic issues, are on the spectrum, are blind, deaf, non-verbal, etc. It is not an insult to say someone is special needs. It is however an insult to degrade and dehumanize them for a laugh so someone can draw attention to themselves.

The really interesting thing about this whole disrespecting and degrading the special needs population is, that in David's entire life any disrespect he has received over his abilities has been by adults. Never has a child or one of his peers ever treated him negatively. In fact, David has always been treated with great respect and with great generosity and kindness from his fellow students and friends. They have been some of his biggest cheerleaders and have been great examples of how one human should treat another, regardless of their abilities. Perhaps it is because these kids have all grown up around David. Many have known him since he was 3 years old and they have watched him struggle, fight and ultimately succeed. They see the joy in him and most importantly they accept him for who he is. To them, David is David and they truly care about him.

So yeah, I spoke out. I said my piece and I walked away. There was absolutely no point in having a conversation about humanity with an unarmed man. When I left he was posting more and more degrading posts about people with down syndrome, autism and special needs of different kinds thinking he was getting to me. He wasn't. The fact was, he was showing how desperately he was vying for both attention and acceptance for his unacceptable behavior. All he ended up doing was proving how low his character truly was and how sad a human being he must be to get pleasure from being such a jack a** to others. My only hope is that if he truly does have special needs relatives, that people treat them with more respect and humanity than he treats others.

Soap Box off!

Until next time..........

So How is David?

People ask me all the time how David is. There is an added interest since 2018 was a pretty interesting year for him. Between almost losing his home and his major spinal surgery, people are curious and rightly so.

David started back to school this year in his wheelchair. While the surgery was blessedly easy and his recovery was smooth, getting back to baseline has not been as quick as I had hoped. Much of this could be because I had the wrong expectations having never been through this particular surgery before. Don't get me wrong, he has made great progress, I just didn't realize how long "back to baseline" could take.

Before surgery, David was using his walker almost exclusively at school with only the occasional wheelchair ride to and from school and when long distances were involved. This was amazing except for the fact that because of his spine, his body alignment was horrible and the more he walked, the more he threw out his hip and undoubtedly was causing himself a great deal of pain. Since his surgery though, getting back to walking with his old walker has been an uphill battle. Now that his spine is so straight, it pulls his already tight hamstrings even tighter. This makes walking for him with the walker he was using, almost impossible. He also can no longer get down on the ground and crawl anymore. As bad as his crawling was for him, it actually did keep certain muscles fairly loose.

When his actual walking PT began, we quickly learned that about the only thing his old walker was good for was to help him strengthen his legs by using it to hold onto while he would stand up and sit down. The problem was, he knew he had lost strength in his legs and he himself did not trust them, so he fought the "sit stands" like the plague. Blessedly his physical therapist was able to help get him a new walker that is much more adaptable to his current situation and can be made to accommodate any changes that come as he gets less tight and builds more muscle.

He was also able to get back on his bike, something he dearly loves and which helps him a great deal. Unfortunately the bike was an old bike, which was not in great shape to begin with and since his surgery, has been more difficult for him to use. Still he gives it his all and it gives him a lot of joy to ride it.

Since starting back to school this year, it has been one of David's healthiest years of all time. (Yes, I am looking for a big old piece of wood to knock on as I type this). So far his only hospital time has been as an out patient back in October for his Botox injections and he has had "the crud" a couple of times, but for the first semester he has only been gone about 10 days so far. By this time last year he had been out about triple that. The fact that his seizures are very well controlled now (only about three since last April) and that we work on his immune system through the foods he eats, seems to have made a huge difference in his overall health.

In September, my baby boy turned 18. It was so bittersweet to celebrate this birthday with him. The sweet part was that this young man who left the womb at 2.2 pounds and was only 12 inches long and not expected to make it out of the NICU, turned 18. It truly was amazing. He is basically in good health and other than his chronic issues, he does very well. The bitter part was that my baby was turning 18. It truly didn't seem possible and there was a bit of sadness that his dad and his Grandma Mary who both adored him, were not here to see this bona fide miracle take place. They would have been just as excited as I was.

So a new school semester has started and my young man is still working on getting back to baseline before the year mark of his surgery. He and I work on his core daily and his leg strength. Weekly he sees his amazing PT and his school and teacher are so good about giving him a workout everyday. It is a team effort but it seems to be working. He will also be due for another Botox injection in February which always turbo boosts his abilities.

This past year has been a year of upheaval (more for me than him since I didn't really allow the whole house thing to touch him) and a year of fighting through surgery and recovery. It has also been a year of change as no matter how much I wanted to keep everything absolutely the same for him post surgery, some things were just not possible. That being said, he has adapted fairly well for the most part as he seems to understand that since his surgery, things are just a bit different.

Going forward we will continue to work on his strength, his muscles and his ability to walk. We are also working on his communication and his understanding of when it's appropriate to be loud and when we must be quiet. I really would like to get him to the point that I can take him to church again. That particular outing hasn't worked well in several years, but I am hopeful.

Currently we have no expectation of anymore BIG surgeries. He will continue with his Botox and from time to time he will have to have his shunt, VNS and Baclofen pump updated, but other than that, if the seizures continue to play nice and his immunity stays strong, the rest of this school year looks to be one of his best ever.

Through all of this, we never forget the people who helped us keep our home, those doctors and nurses and EMS people who give their all each time David is in their care, his amazing physical therapist, his equally amazing teacher and his para's past and present who have given their time, care and love to my special young man. Without all of you, we would be nowhere close to where we are today. We ask for prayers for a continued amazing school year and David and I wish you all a wonderful 2019.

Until next time.......

.....And We Survived

Facebook has this "memories" app and each day it takes you back to whatever date it is, each year you have been on Facebook. You can see your old posts and pictures and sometimes it's kind of fun. Lately though, my pictures and posts have been about David's surgeries, hospital stays and ER visits. Apparently this time of year is usually a busy one for us.

Looking back though, there are so many memories of my sweet boy and so many times when I can't believe we all survived that particular time. Honestly, as a mom, I can't believe that I have made it through all the crisis in David's life and am still here to tell about it, but that is what Special Needs Mom's do.....we survive.

Special Needs kids with chronic conditions are often plagued with poor immune systems and are medically more fragile than the average child. Lungs, heart and kidney's often cause secondary issues to their primary conditions. Add into that the medications that many have to take for muscles, anxiety, seizures and a plethora of other conditions and their little bodies are just an ER visit waiting to happen. Then of course there is the sending them to school with all the other kids whose moms didn't think keeping their kid home with a fever, strep throat or that mysterious rash are necessary and we just get set up for more "I can't believe we survived this" moments.

David's moments started before he even left the womb as my hematacrit dropped due to a placenta-previa and I was only 27 weeks pregnant. Being seemingly fine one minute and the next having everyone rushing to get you to surgery and the neonatologist coming to tell you that they will "do everything they can to keep your child alive once born," is quite the end to a pregnancy and quite the start to a brand new life...but we survived. 

There is nothing that makes a parent more desperate than knowing their child is sick, maybe even dying and there is nothing that they can do to protect or save them. I had many of these desperate moments the first three months of Davids life in the NICU. It was a roller coaster ride of inconsistency and emotional turmoil as the day might start just fine, but within minutes turn critical. Many was the time I sat by my sons bed, holding my rosary and begging God not to take him from me. I would watch the breath mechanically go into him and see his tiny body fighting for life and I was powerless to do anything but pray.....but we survived.

How many frantic dashes have I made to the ER under my own steam or by ambulance because of seizures, sickness and other life threatening issues made more relevant and scary due to his condition? Too many to count and I would always find myself back at his bedside, usually alone and praying that hopefully once again it was God's plan for David to stay with me and live his life. The hours spent watching his O2 sats, his blood pressure and his heart rate and the gut wrenching fear that would overcome me each time the alarms would go off telling the doctors, nurses and me that no...he was still not okay were terrifying.....but we survived. 

Of course there were also the surgeries...many surgeries and they were mostly all BIG surgeries that would be hard on the healthiest person, let alone on my little guy. Each surgery was performed by the best in their field, but long hours under anesthesia and risks of infections and post surgery complications were always against David. One time, we almost lost him as he became septic post surgery and he was literally moments away from death. We were at a hospital in another state, away from home and I was by myself, once again praying that this would not be my last moments with my son. And even the surgeries that didn't have such dire post surgery outcomes had their difficulties, such as the spika cast that was basically a cast on both legs from hips to ankles with a bar in between that kept his legs in a V formation. We had to drive 8 hours in our van with his legs like this to get home. Poor guy was a trooper though.....and we survived.

Yes, David is a survivor. He has survived prematurity, a grade 4 brain bleed, strokes, hundreds of seizures, Candida (and all the nasty side effects), two major hip surgeries, leg surgeries, a major spine surgery, the flu, pneumonia, being septic several times, strep throat, hypothermia brought on by medication, 2 post surgery broken legs, surgeries to remove hardware and shunt surgery five times (three of those times were within three days).....and I survived too!

Life as a Special Needs mom is all about survival...the child's and the parents. It's about faith, prayer and the ability not to sweat the small stuff and actually knowing when it is the small stuff. Looking back, these last 18 years have been quite the adventure and mixed in very heavily with all of  the drama has also been laughter, watching my son whom they said would never make it out of the NICU not only survive but also thrive. I have watched him grow and mature into a beautiful young man with a mind of his own, a stubborn streak a mile wide and a wicked sense of humor. There have been trips, mile stones and tremendous joy and those I guess are the way I as a mom have survived, because only when Facebook reminds me of the hospital stays, surgeries and critical moments do I think of it as survival. Day to day as I watch my boy grow and live his life happily and to the fullest, that is just what I call living.

Yes, I am a survivor but more importantly I am a mom to a very special boy and  quite honestly, I wouldn't change a moment of these last 18 years. God chose me.....and we continue to survive.