Goals Met and Such.......

In the past fifteen years, there have been so many roller coaster rides. If you read this blog or follow David on Facebook, then you know, and you know I have taken you all along for some of those tougher rides. Currently though, things are exciting. This doesn't mean that the minute I push "publish" on this blog that we won't be right back on the roller coaster, but it does mean that right here and now....in this moment.....David is doing and accomplishing things that he has never done before. He is making daily and consistent progress and yesterday after PT, I had to take some alone time and shed a few tears.

Yesterday at PT, Davids therapist did an updated evaluation on where David is at as to where he was a year ago when he started with her. We set goals back then for David and while he made a little progress here and there, he had a lot of set backs with seizures and his health. We missed a lot of PT sessions and for a while, he lost a lot of ground physically. In January, I almost quit sleeping over the state of David's health.

If you remember, David was doing home bound school because of his seizures. He was throwing them almost daily and sometimes multiple times in a day. He was fairly inactive and even though he was having HB school, he was just losing so much. His little body looked frail and his ribs stuck out like razors. I saw it and was trying to figure out what to do as I met with doctors, his PT and his school team. It was getting pretty devastating.

It was at this time I started researching alternate ways of eating, diets that worked for kids with cerebral palsy and foods that would help to build muscle in his body and strengthen him. Once the diet was in place, we hit the PT strong. The diet seemed to be keeping him healthy and we were seeing less and less seizures.

Then came the botox. I knew so little about botox but both David's PT, whom I trust implicitly as well as his neurologist whom I trust even more, supported botox therapy for him. I had to try for his sake. After his first week of weakness and my constant fear that something would go wrong....it has been one of the greatest things that has ever happened for David.

So at his evaluation, his PT proudly told me that David has met or surpassed every goal that she had set for him. He can ride his bike, he can walk in his walker without a seat and he can walk pretty good distances with his walker. It was like he got straight A's on his report card and I was so excited I wanted to cry right there. So as these were all met, we had no choice but to set up a whole new set of goals and one of them is......standing on his own! It literally took my breath away.

David is very determined, but even with his determination.....he will have obstacles ahead. They are the kind of obstacles that to this mom are terrifying, but they are also an ends justifies the means scenario, if the outcome is that David is independent. Currently we are getting David as strong as he can be from head to toe and diet and PT are the keys to this. Then there will be his spine surgery which at this point looks to be a necessity. If not done, then eventually the curvature will start crowding his internal organs and make standing impossible. After that recovery and re-strengthening....then there will be the decision to see if he needs his hip done again. You might remember that after his last hip surgery he broke his leg and in the process of the leg healing, his hip fell back out of alignment. If that surgery is necessary, then he will have to heal and once again....re-strengthen. After that though.....the sky should be the limit for him.

It is a lot to process and a lot to keep this mom from sleeping some nights, but it is also exciting. So much has to go into the next couple of years of Davids life and one thing his PT really wants is the gradual banishment of his wheelchair. Yep, she wants him using only his walker as his means of mobility whether it is at home or at school. This means....Mom, teachers, para's and all those who participate in David's day to day life are going to have to be strict with him, patient with his progress and huge cheerleaders in his life. I have no doubt we can all do it. I mean really....who doesn't want to see David achieve his independence?!

So yeah....standing on his own. Those are words that I had been told to never even think about where David was concerned.....let alone hope for. Now they could be his reality. Now.....maybe you understand my tears.

Well....as I said....this summer is exciting and soon we will add the pool to our daily therapy. David is amazing and apparently he maybe walking yet. We will keep you posted. Until then....Happy Summer Everyone!

Schools Out for Summer

Can you believe it? Today is David's last day of school for the 2015-2016 school year. You can almost hear Alice Cooper singing in the background. It doesn't even seem possible. It has been quite a year.

As he was waiting for the bus this morning, I couldn't help but watch him and think what a handsome young man he is. Yes, I know ALL mothers say that about their kids, but to me.....he is so handsome. He looks just like his daddy and he has the most infectious laugh and smile. He is growing up so fast and every day I am blessed beyond words that God chose me to be his mother.

Looking back, this year has had it's highs and lows from the surgery to remove the plates in his knees and leg, to his seizures that came back with a vengeance to home bound school. He had a few hospital visits mixed in and he gave me a couple of scares that only David can give.

On the flip side, he has an amazing PT now that has pulled so much hard work out of him. Now that the medal plates are gone, he was a good candidate for botox and that has been amazing and finally....he ended up in the high school with a wonderful team and has thrived since day one. All in all....it has been a really great year.

I think of all of Davids school years, this one might have been the most educational for me. I have learned so much about David and Davids world. I have learned more about cerebral palsy and a little about autism....and I have learned a great deal about just how strong and determined David is. A doctor told me once when David was in the NICU, to never underestimate David and to never count him out of anything. Boy was that doctor correct. The older he gets the more amazing David is.

So now that school is out.......what happens? We have a bit of break for a couple of weeks and then David will have a month of ESY.....extended school year. It will only be for about 12 hours per week but it will be enough to keep a bit of  a school routine going. He will also continue his PT weekly at Heartsprings and once the pool is open, he will be having daily pool therapy.

I also hope to throw in a lot of bike riding as he has mastered his bike/trike and thoroughly loves riding it. I hoping there will also be park outings as well as time spent at the zoo and some other fun local places. And finally....I am checking out HIPPO therapy (horseback riding therapy) as that is something I think he would love to do again and would benefit from immensly.

So as you can see, I am hoping for a relaxed and yet full, summer. We all need it as next year he will be a full fledged, mostly full time high school student and we need to be rested up and ready.

It's the last day. As of tomorrow...our schedule changes to no real schedule and weather permitting.....you might just see us turning up just about anywhere.

Happy Summer!

A "Special" Bathroom Rant

Bathrooms! Who knew that in 2016 bathrooms would be the headline on every imaginable news outlet? No...we have no real world problems to worry about such as hunger, healthcare and unemployment. So bathrooms it is. Can you tell this mama is gearing up for a bit of a rant?

While it is true that I have an opinion on most everything, my opinion on the transgender issue will remain my own, at least on this blog. However, I have a HUGE opinion on bathrooms! Go figure.

Now, for the everyday ordinary person, a bathroom should have only one main purpose. For most of us it is a get in, get out event and up until recently....the only issue most of America had with a bathroom was it's cleanliness. Even that becomes less important if you are in dire need of the facilities. I myself have been known to use a men's restroom (with spotters of course), an alley behind a building, the side of the road and even an out house. I am still traumatized over that last one.

Today though, bathrooms have become battle grounds of who is privy to use which privy. Bathrooms have become the forefront of politics and are even being used as bargaining chips in some states. Businesses are staking their profit margins on where they stand on the whole restroom situation and people are literally losing their minds on both sides of the issue. Really?

Finally, I got to the point where I just could no longer hold back and I had to speak out. This is bull fritters....pardon my French. We are talking about the place where people feel "comfortable" going to the bathroom. Well excuse me, but long before the transgender community was feeling uncomfortable, there was a whole, much larger group of people who felt uncomfortable using restrooms and no one did diddly squat for them. What group am I referring to? Mom's and especially mom's (and dad's too) with special needs kids.

Oh yes. As any mom can tell you, it is absolutely no fun trying to take a 5 year old boy into a women's restroom. The 5 year old is not old enough to go to a public restroom on his own and yet he is not crazy about going into a bathroom and doing his business where he is surrounded by women. The other women are not particularly excited to have a little boy in the ladies bathroom either, especially if there are also little girls in the bathroom. It is awkward for all involved to say the least and I am sure for those single or lone dads with daughters, their experience in the men's room is equally as uncomfortable.

Thankfully, in the new millennium, a light bulb went on above someones head and certain public places such as pools and gyms came up with the idea to have a "family" restroom. This is a place where mom and/or dad can take the kids in without the disgruntled looks of others judging them for bringing their kids into the "wrong" restroom. Still, even today though, these family style facilities are few and far between.

As uncomfortable as the bathroom situation could be when my older kids were growing up, I never really knew uncomfortable until I had David, my youngest son who has cerebral palsy. Bathrooms are simply not equipped for parents with special needs kids and THAT in my humble opinion is the comfort that should have been worried about and worked on long before now.

When David was small, it was easier if I had to go to the bathroom, but still somewhat awkward. If nature was calling for me, then I would have to bring him into the ladies room with me, stroller and all. If it was a single toilet space then there was usually room for the stroller and I both, but if it were a multi-stall space, then I would have to wheel him into the stall with me, leaving the door wide open and ending all privacy for myself and any unfortunate on lookers. As he got older though and was in a wheelchair, the spaces were much more difficult to maneuver with his chair and other women didn't really appreciate having him in their bathroom. It was a matter of privacy and comfort and believe it or not....yes, I have a special needs son, but the world does not revolve around us, special needs or not. Other peoples comfort is a concern for us too. It comes down to the fact that there just has to be a better system for special needs parents, kids and bathrooms.

The real difficulty though is the special kids. Just because they are special doesn't mean they don't have to relieve themselves and that they don't deserve the same privacy and respect that the rest of the world seems to demand. This can get quite complicated when restrooms are neither private nor equipped with the proper space and equipment for those with different needs.

When kids like David have CP, their muscle are often very tight and even in the best situations, changing them can be difficult. Laying them on a cold, hard  floor makes it even more difficult. They have to be laid out to be changed and no mom wants to lay their child, who is likely already prone to every infection known to man, on a nasty, dirty public bathroom floor. It is disgusting and again, not great for others who also have to use the restroom and who are having to dodge you and your child in the middle of the floor.

Yes, some bathrooms do have pull down changing tables, but most of those are for very small children and often special needs kids remain incontinent for a good deal, if not all of their lives. So then what? We are back to the floor? Quite frankly....I think with the ever growing special needs population, they deserve better.  As they grow older, the need for a "comfortable" and private bathroom becomes even more important and honestly.....very few of those exist.

As a special needs parent, we learn to roll with the punches, adapt to that which seems unadaptable and make do because our options are limited. Through the years, I have changed David on my lap, in a chair, on the hood of a car and in the van many times, just to avoid a disgusting bathroom floor or because there wasn't space in the bathroom to change him. It was difficult but always better than the alternative. As he grew older though, our options grew smaller and his need for privacy and dignity made the above changing options obsolete.

Now David is getting older. He is nearing the age of manhood and although we are trying to potty train him, the reality is that he will likely always be incontinent and therefore in need of changing. Does this mean we can never leave the house because there are no facilities equipped to handle the changing of a grown special needs child? I know I am not alone as I have talked to many mothers of special kids who are in the same boat. Is his life, comfort and dignity less important than that of a transgender person? Is he any less deserving of a comfortable and private bathroom than say Caitlyn Jenner or Jazz Jennings?

The percentage of transgender people in need of a special bathroom in the United States is 0.3%. The percentage of disabled individuals in the U.S. is 19% and of those at least 15% need specially equipped restrooms in order to be able to feel comfortable going out into the world. They need bathrooms big enough for wheelchairs and walkers. They need changing tables that can hold kids up to 100 lbs. They need space for the special needs person and their caregiver and most of all they need privacy so that they are comfortable and those around them are comfortable too. Why are we not fighting for this? Why isn't Target fighting for this? Why isn't Bruce Springsteen refusing to play concerts in any state that doesn't provide "comfortable and private" bathrooms for those with special needs? Why isn't President Obama taking a stand for our special needs population? It's like talking to a wall.

So to all of you who are worried about bathroom comfort, I ask that before you give a "special" bathroom to a person who may identify differently, but can still easily walk in, use the bathroom, wash their hands and walk out, please think about those "special" individuals who can't do that. Think about those who "need" a bathroom that accommodates their ability to relieve themselves, be changed and helped if necessary, all while maintaining their self respect, dignity and being able to live their lives out in the world.

Rant over....

Botox....It's Not Just for Wrinkles Anymore

So...you know Botox? No you don't! Okay....maybe it's just me. Maybe,I don't didn't know Botox, but I am learning.

This has been an interesting week. Interesting in the fact that I have felt awful. I think it is the change of seasons along with maybe having a bit of a bug, but it has made me wish I could crawl into bed and stay there until I feel better. Unfortunately, life is not as accommodating as I would like it to be, so.....I lay down when I can and carry on with life as best I can. Yes, I will survive, but it hasn't made this screwy week any easier to deal with.

Monday, David had Botox injections. They are likely to be the first of many in the next couple of years. Yes, I said Botox. I know....crazy right? If anyone in this family needs Botox...... I will not even finish that sentence.

Botox is something that was brought up to me about a year ago. The neurologist originally brought it up and thought that somewhere down the line David could benefit from the procedure. Not knowing for sure how David could possibly benefit from Botox, it was one of those things that as a special needs mom, you kind of let drift out of your brain or file it somewhere in the back of your mind under "I'll think about it later."

Later came, when David started going to Heartsprings for physical therapy(PT). The PT loved the things that David was accomplishing but she felt he could do more with a little help. That help she felt could come in the form of Botox. So I unfiled the topic and asked her more about it.

David already has a device implanted in his abdomen which is called a Baclofen pump. Baclofen is a muscle relaxant that is often used in kids with cerebral palsy, as their condition causes their muscles to be very tight which makes, walking, using their legs, feet, arms or hands very difficult if not impossible. In kids like David, if the Baclofen pump is implanted, then they get a steady and constant dose of Baclofen which helps to loosen the muscles. David's upper body is pretty good, but his lower body had been very tight which made PT difficult and walking almost impossible. Once the pump was implanted his muscles became much easier to work with. The problem with the pump though, is that it is kind of an all over agent. It can't really target specific muscles. which means some muscles get looser than others and then that can be a problem. This is what we found with David.

If you see the videos I post of David riding his bike or walking with his walker and you notice that he looks awkward or seems to be dragging his legs a bit, it is because his hamstrings are very tight and can't carry the load of his body properly. They are making his other looser muscles pick up the slack for what they should be doing. Valerie, his PT felt that if he got Botox in his hamstrings then this might loosen up only those muscles, thus making it easier for him to strengthen them. We went back to the neurologist and he felt that she was right and so Botox it would be.

To be given the injections, David had to be admitted for outpatient sedation at the hospital. It really was much easier than other outpatient "surgeries" David has had. They bring him to a hospital room and everything is done right there from start to finish. I haven't decided yet if it is an upside or a downside that I was allowed to stay in the room the whole time or not.

The procedure was a little rough for David as they had to put an IV in and his love of IV's went out the door many many hospital stays ago. It takes a crew of 3-4 of us to hold him down as he just freaks when he knows they are going to do it. It doesn't help that his veins fold, roll and run away every time a needle comes near them. A dose of oral Versed and 3 wildly uncomfortable sticks (for all involved) later, and he was good to go.

They then put him under, where he was in a half awake, half asleep stupor. They need his muscles reactive, but his body feeling or more likely remembering nothing. In the room at all times are the neurologist, the anesthesiologist, nurses, students (it's always a teaching moment with David) and me. The doctor then injected David in each hamstrings with the Botox. He used a long needle attached to a machine that I believe was showing waves of his muscle activity.

The actual procedure only took about 10 minutes and they said he should come out of the anesthesia within an hour. Two and a half hours later, we were still waiting for David to wake up as he slept a deep, snoring sleep.  Once he was awake though, he seemed fine and they said he was good to go to school the next day and there should be no side effects or issues. You would think by now.....we would all know David better than that.

So what is the end game using Botox? The way the Botox works is that every day we will see more and more looseness in his muscles. By about the 6-8 week mark he will hit the peak. During this time we will work those muscles, stretching them and making him ride his bike and walk as much as possible. In about 4 months, we will then do the procedure again. The goal is that each time, less and less Botox is injected and more and more hamstring muscle is built and strengthened. In the end, we want his hamstrings to be strong and do what they are suppose to without any Botox intervention.

After we got home, it was obvious Davids legs were very shaky. The looseness apparently begins right away. That night, he had a tiny seizure. It was so tiny in fact, that I wasn't even sure it happened, but with the stress his body had been under that day.....I wasn't surprised.

The next day he went to school and when he came home, he was a little monster. Yes, I can say that....he's my child. I put him in the stander and he refused to get out after an hour and a half. He went into full on hit mode every time I tried to take him down. I am thinking that maybe that stretch made his hamstrings feel good. His circulation though wasn't liking it as much as his hamstrings were, so in the end, Mom won out. That night, David had another seizure. This time it was evident.

Over the course of the next 36 hours, he had three more. In the process of all of this, the neurologist and I were in close contact. Why was he having seizures? It could have been the stress of the procedure, out growing meds, the wind blowing the wrong way.....who knows?! Whatever it was though, we needed to get them under control, so he upped the dosage of one of his night time meds. Yesterday morning I kept him home from school because of his seizures and his less than sunny disposition. It had been a long night for all of us and quite frankly I didn't figure he would be any good at school. I was right.

He got up and played until about 11 a.m. at which time he crawled in bed and fell asleep. You remember that post procedure sleep I was talking about on Monday? Well, that is how he slept yesterday until 8 p.m. He woke up long enough to eat and then fell back asleep. He didn't move until I forced him to get up at 9 a.m. this morning. This is so not David. So, the neurologist and I had another talk. Apparently David is not handling the added dose of the med well. The doctor is however hoping that he was on it long enough to have handled the seizures. So as of tonight, we are back to our regular dosages and we will see what happens. We may have to play with meds for awhile, but Zombie David with the nasty attitude is not acceptable.

Today, David went to PT and his therapist had him riding his bike. His muscles aren't strong enough yet to pedal by himself like he was doing, but he was riding with assistance and with every pedal he was stretching and strengthening those little legs. So for now, my job is to put him in the stander daily. Schools job will be to make him walk and ride his bike as much as his strength will allow. The bike will likely be easier but the walker is still necessary. And finally....Davids job is just to keep pushing forward like he always does.

Oh....and a little update to project Fatten David Up. The 5-6 meals per day along with protein and good fats seems to be working. When he was at the hospital Monday, they weighed him. Since February, he has gone from weighing 74 lbs to now he weighs........87 lbs!!!! I am very pleased and so was the doctor. Way to go David!!!!

So there you have it. David's getting Botox and Mom's gray hair and wrinkles.....well.....they remain the same. Stay tuned!

Riding the Waves of Peace....a David Update

April! And the end of April to boot. My how time flies when you are living life!

It's been a while since I did an actual update, so while I appear to be on a blog binge, I thought I might do one today. It's hard to update though when things are quiet and normal because no one wants to read, "Things are quiet and normal!"

I'm really not sure when the last update was so I will just start from January.

In January, things started changing for David. Now I am not a fan of change, simply because I equate it with something negative. Yeah that's me, the cup half empty kinda girl, but the changes we have under gone have actually turned out to be pretty positive.

Also in January, David was still home bound for school, but after some discussion, we decided that since he would be transitioning to the high school next year anyway, and since he was 15, perhaps this was the ideal time to actually start the transition. So....his whole team changed and his new high school team began coming to the house to work with him. Although we (especially me), missed the comfort of knowing everyone and how everything worked at MGS, I knew that it was time I bit the bullet and admitted that my baby, wasn't even remotely a baby anymore. Can I say this sucked? But I knew it was for the best.

David seemed to like the new faces and the new home bound schedule and amazingly seemed to handle it well. After a couple of weeks, we set a date for him to actually start back to school. This time, he would be attending high school. You will never know the mixed emotions I had when I sent him that first day. As I put him on the bus, I had great hopes that this would be the start of something really good for him, but I still felt hot tears stinging the backs of my eyes as I sent him off. It was a mile stone that I only dreamed of previously. Now we were living it.

Well, it seems that the move to the high school was a good choice for him. I think he truly enjoys being with kids his own age and I have noticed that his attitude and mannerisms have matured a bit, even at home. He is not nearly as wild as he was and the reports from the school are that he is acclimated well.

One of the best things about the transfer to the high school, has been the kids. I have had several parents contact me and tell me that their kids have come home and told them that they have seen David in the halls. They are truly happy he is there and very welcoming. A couple of kids have even told me that....they have Davids back, should the need arise. While I don't anticipate the need arising, this has still been very unexpected and very appreciated.

In March David had another EEG. It was a great experience for many reasons. Usually David has to have mild sedation in order to do the test because he likes to move around and is a little bit combative when people come at his head. This then adds a good 30-45 minutes in the office. This time though, David sat in the chair, let them put the wires on and never moved. We were in and out in under an hour. It was wonderful! The best part though was that his results came back NORMAL. This means that his meds and his VNS are currently keeping the seizures well under control. In March he had been almost 4 months without a seizure. That is the longest he had been since he started having seizures in 2008.

David has a flex sort of schedule at school this year. He goes Monday, Tuesday and Thursday. He has Wednesday off as a sort of a recuperation day and Friday because he has Physical Therapy (PT) at Heartsprings in Wichita. This is working out well for him and I think it makes school easier for him. Honestly, it makes my life easier too. This will likely change next year, but for now, it is ideal.

In February, it became apparent that Davids home bound school status and his more inactive lifestyle at home had done him no favors. He had lost some weight due to the fact that he had grown a couple of inches, but more alarming to me was that he was losing muscle mass, which meant he was quickly losing his lower body strength and his ability to walk. His upper body is very strong, but his lower body was starting to fall way behind and with these kids, when they start to fall behind, they may never be able to regain what they lose. David had undergone too much and worked too hard for me to allow him to lose anything.

I was now on a mission to get David back to where he was prior to being home bound. I talked to the doctor and his PT and then I put him on a new food plan. He now eats 5-6 times per day and his diet is full of  healthy fats, protein and a good selection of fruits and veggies. You would be amazed how expensive it is to eat this healthy. My grocery bill has nearly doubled, but the up side is that he has gained 4 lbs and he is getting much stronger. His PT is thrilled at the progress he is making and so am I. We are finally starting to catch up again.

At the end of March, David had his baclofen pump surgically replaced. This pump is in his abdomen and it has tiny tubes/wires that constantly take baclofen (muscle relaxant) to his muscles to keep him from being very tight and rigid because of his cerebral palsy. Every seven years this pump and the wires (if necessary) need to be replaced. This was his seven year mark. It is an outpatient surgery, that went very well. He was back at school within a week. Unfortunately, he was allergic to the steri-strips or possibly what they attached the steri-strips with and the skin around his incision became inflamed and almost infected. It happened all of a sudden and about a week after the surgery. Luckily his school para and teacher were on their toes and caught it. We got him in just as it was starting to blister and get very nasty. It took a doctor appt., antibiotics and an ER trip but now it looks amazing.

Then this month. Hmmm....well....he has had one really rough seizure which landed him in the hospital and then a couple of small seizures. The main (big) seizure he had was the product of him hitting his head when he came up underneath a door knob. He kind of half laughed and half cried when it happened and I frantically checked him for a break in the skin and that he didn't hit his shunt. He seemed fine, but within an hour he had a full on seizure. It earned him an ambulance trip to the ER and an overnight stay in the hospital. Luckily there was not shunt damage, but unfortunately he did give himself a concussion. He was my first kid to get one. Sigh..... What an honor! Since, he has had a couple of small seizures, but they think that more than related to the concussion, it might be that his growth spurt has caused him to outgrow his med dosages. We are watching them currently to see if a pattern emerges. Stay tuned......

All in all.....David is doing amazing. He has lots of energy and he is very happy. He is doing well in school and he is non stop on the go at home. He seems to be comprehending more than he ever has before and his physical abilities continue to expand and grow daily.

Currently the speed bumps are small but when they do happen they are few and far between. We did find out that probably in the next 6-9 months he will have to have a spine fusion surgery as he does have a pretty good case of scoliosis. His is in the lower part of his back and he currently has about a 43% curve. They don't want to do anything until it is 45%. It will be a fairly significant surgery with about a week in the hospital and a 6-8 week recovery time. When he gets it, it should make a huge difference in his posture and his ability to move, walk and position himself. With that in his future, his PT and I are working like crazy to make sure he is as strong and healthy as he can be by then so that his recovery is just that much easier. Yep....another speed bump.

So that about covers it all. Life is good right now. We ride the waves of peace when we can and then pick ourselves back up when we fall. But really....isn't that the way everyone does it?

Until next time.......

The Special Needs Parent Kind of Tired

"I am tired!" No...."I am exhausted!!!" Those are statements that we all say or at least feel from time to time. When you are a special needs parent though, often those words become interwoven in the fabric of our being. Instead of a feeling, it becomes a way of life. If you are one of us, then no explanation is necessary. If you are not.....then no true explanation will ever be possible. No drama...just truth.

As a parent of a special kid, you are not merely a parent of a special kid. Most of us have other children, family, home, jobs, spouses and life in general that take up a full 24 hours in our day. Add to that doctors appointments, therapies, IEP's, ER visits, surgeries, hospital stays and endless phone calls about insurance, funding and the many hundreds of changes that occur in the life of special needs and is there a wonder many of us are down right cranky, sometimes forget to shower and often times have no patience for that which we deem insignificant, unnecessary or just down right bullsh**?

Don't get me wrong, there is nothing more rewarding than being a mother to David. He has changed my life and how I see the world. He is a shining positive in my life. Seeing the world through his eyes has taught me to cherish and appreciate all that I took for granted with my other children. He has taught me strength, bravery and what it means to deal with the unexpected head on, without asking Why? He has also taught me that life is not fair, not everyone cares, not everyone knows (even if they claim to be experts) and that special needs has a learning curve like nothing else in this world.

Today I was talking to a friend and lamenting (yes, I lament at times when I am really tired), about my day yesterday. It began at 8 a.m. with my first phone call and between the 8-10 calls I had to make and return, along with hold times and the always enjoyable...."There is nothing we can do to help you," I was on the phone until after 5:30 p.m. This resulted in a migraine and tremendous frustration, as the end result was that I had no more information after 9.5 hours on the phone, than I had when I started. It was exhausting and unfortunately......just another day in the life of a special parent. Truthfully speaking, there are at least 3-4 of those kinds of days every month and just when you think you have it all figured out and are on the right track, you find out all the rules have changed and you are back at ground zero, starting all over again.

No! I am not complaining, because knowing all that I know now, if I had a chance to do it differently, I wouldn't. I am however, being honest. This is just the way life is and like anything else in life, you learn to live with it and how to make the best of it. Some days, the best is easier to find than others.

As I said, I was lamenting to a friend about the details of yesterday and she said, "You should write a book about all of  this. You could really educate a lot of  new special needs parents." I just laughed. As I told her.....I really know nothing that would help anyone. The truth is, none of us really do. Each child is different and so is the journey that they must take. Special Needs is a wide umbrella that covers everything from cerebral palsy kids like David with a laundry list of other issues, to physical needs, mental needs, behavioral needs, down syndrome, autism, and the list goes on and on. The needs are not all created equally and neither are the paths which child and parent have to go down to get what is best for the child. You are dealing with doctors, therapies, equipment, hospitals, insurance, schools and often because these needs come at huge financial costs, you have to be on lists for funding and both financial and medical help. All of this takes constant updating because there is constant change within the system, funding possibilities and the rules in general. It is a never ending cycle of paperwork, phone calls and often......frustration. More over, you are constantly dealing with conflicting opinions about your child, misinformation and sadly, people that are in positions that should know more than they do. In the end, as a parent, you are often left to your own devices and your own ability to research, ask questions and eventually learn to trust and go with your own gut instincts and your ability to know your child better than anyone else. It can be daunting at times........especially if you are doing it all by yourself.

Perhaps if I could give new parents of special needs kids any advice or words of wisdom it would be this: When you get that original diagnosis, don't let that limit you or your child. Remember, medical science is fluid and what is one way today may be something completely different in 2, 4 or 10 years from now. On the other hand, don't hide your head in the sand and live in denial about your child either. Many times, the earlier your child gets into therapy, has surgery and is hooked up with the right team from doctors to teachers and therapists.....that makes all the difference in the world for their outcomes and their future. Don't cheat them because you can't deal with a diagnosis.

Finally, Davids first physical therapist with Rainbows and then his amazing team in early childhood education, both told me the same thing, and this was the best advice I was ever given. I was told: "You are your child's advocate. You are his voice and no one will ever know your child better than you. You must fight for your child at every turn and never let ANYONE (doctor, teacher, therapist, etc) ever tell you differently." They are words I grabbed onto like a drowning woman on a sinking ship. I took them to heart and have lived by them ever since. However, living these words has not always made me popular or won me friends but I have always known that I have been true to my son and his needs and that is all that is important.  I would in fact say, that this is the one static fact in all of special needs. Regardless of your child's needs.....these words should be considered the foundation for all special needs parents.

No, there will be no "How to be a Special Needs Parent" from me. The fact is, there is no straight line to the finish. As I said, every road is as different as every child. What I will say though, is the next time a special parent seems as if they are a bit cranky, you might figure they have been fighting some lengthy battle for their kid, so maybe cut them some slack. If their hair is not done and they smell like they took a baby wipe bath, they probably did. Just know that bathing was probably so far down on their list of priorities that it simply became expendable that day. And finally.....if they look, act or even say they are tired.....know that it is true and just be thankful that you will never know the kind of tired of a special needs parent.