Hard Fought Victory

As you all know autism isn’t easy and there is always a fight to be had, but some are harder than others. When you win one of those hard fights for your children it gives you a feeling of both relief and accomplishment. We all have to celebrate the small accomplishments because it is often all you have. Recently we won what I would call a battle rather than a fight and won out of district placement for the second time.

The first time we had to fight the school district was nine years ago when we needed to put our daughter into residential. She is non-verbal and has autism on the severe side. At the time my daughter was the first child of her level the school district had seen and they really didn’t know how to handle her. I have to say I know they tried but they just didn’t have the staff or experience to handle her. They did give us accommodations multiple times, and although they helped to some extent they were just not enough. The entire process took about a year and a half and we did everything that was asked of us to get it done, which I will tell you is a step that has to be done even if you don’t think it should. Parents need to understand that school districts can’t just hand out the out of district placement it has to be justified.

We had to allow the school to do all the testing they wanted to do, and we did all the testing that they asked for. As with every fight you need to go in prepared and that is exactly what we did. I will admit my wife took charge of most of it and did most of the fighting. Like it is most of the time I worked and my wife did the hard job and fought the district. I stepped in when I had to but my wife did most of it. We did we were going to need an advocate, but as it turned out we didn’t in the end. Our proof snd our experience, along with many doctors snd therapists proved the point. A final stay at Childrens hospital did the trick as difficult as that was.

What I would like to add was I was on the school committee when this all started but as things got a little tense I resigned so there was no conflict of interest. I could have just recused myself for certain votes on the committee and I did have the right to advocate for my child and stay on, but I live in a small town and didn’t want anyone yo think I got special treatment. Here is the 100% truth, I didn’t get it and I didn’t expect it. Everything we did, we did by the book. I originally got on the committee to help special needs children because I had a skill set that I thought might be missing. My service and business experience also worked because I knew things some others didn’t. The other thing that helped was I have always had the ability to take feelings and emotion out of the equation in regards to business decisions, and trust me that is very important. I received come take more than once that people were amazed I could do that. Truth be told in my line of work in the medical field you have to be able to do that as hard as it is sometimes because you care about people but you have a business to run. As I have said to people before, if we don’t stay in business then we can’t help anyone at all.

I know I have said this before but as much as we are all used to fighting to get what our children need, there are times you have to take it Dian a notch. In my family the reason why my wife and I work do well together is because she is the more aggressive one, and I am the more even calm one. When it comes to trying to get out of district placement, you have to remember you still have to work with the district team even after placement when you have IEP’s so you don’t burn the bridge. You have to realize they have a job to do and they have to report to someone, or some entity, they can’t just hand you the keys to the car. The key is to be assertive and consistent, but not disrespectful and mean, that gets you nowhere. Keep the pressure on and don’t give up but do it in a professional manner.

Truth be told, many parents go in unprepared and ask for something that can’t be proven. just because you know your child needs something doesn’t mean that is all the proof you need. Think about it this way, an insurance company doesn’t pay for something without a diagnosis and the a prescription from a doctor. Even then sometimes things require a prior authorization first. Your proof is all the testing, all the chart notes derived from that testing, letters from therapists and doctors. Even letters from the community that describe situation that people have seen. There are med lusts, med trials, changes of dosages over time. All of it is needed to get you where you need to be. This is exactly why it takes so long to get the placement. Never argue about tests they want done or a specialist you have to see because that only helps your case. You keep records of everything, and you make the school provide data they have, it is all part of it.

I guess all, in all this is a war and not a battle, it isn’t just one big fight, it is multiple battles over time. You are going to win some battles and lose others, but if you win more than you lose then you are in good shape. I have to say even though it was a great relief to get where I am, it was a Turing and exhausted process so it is now recovery time. Can we celebrate, yes we can, but we now have a new battle to fight, and that is the one with the new school because you have to set expectations and you have to stay on top of things. If you picked the right school it will be much easier but it still isn’t a set it and forget it situation, it requires work and perseverance. Good luck if you are fighting now, just know it is all worth it because your child deserves it, you deserve it. In the end you will both benefit for it.

All About the Insurance

Today I am going to talk about insurance because it is often at the center of what services you can get for your child. Not all insurances are the same and not all coverage is the same. Knowing what your coverages are is extremely important when you are deciding what insurance plan you choose. Trust me the old saying of you get what you pay for is true when it comes to insurance so you have to do your research. What I am really saying is if you choose a plan that is cheap, you are going to get bad coverage. Making things worse is that when you deal with Medicaid plans, it is even different from state to state, they are not all the same. So my friends, where you live makes a huge difference in your services. I have touched on this before but I am going to do it again for people who have missed my old posts.

As many as you know, I am in the disabilities industry so I have information that most do not. This is another one of those things that I say is not widely advertised, and is not just given to people. The unfortunate fact is the people who work in customer service at the insurance companies often don’t even know their insurances coverage criteria or rules. I often tell people if you want to get to the truth you are often going to have to speak to a manager. The truth is also that customer service is a different department than authorization, so they just don’t know what they should. There are often arguments between medical suppliers and customers because the supplier often knows the rules and tells them to customers, yet when the customer speaks to customer service at the insurance they contradict it. This my friends puts the supplier and customer at odds, and makes the customer believe the supplier isn’t telling the truth. Let me tell you most of the time the supplier does know the truth because they have to if they want to get paid. Listen everyone, a supplier is not going to supply a service, or any medical equipment that costs them more to buy or supply then they are going to get reimbursed. The second part to this if if a supplier is able to sell something they want to sell it so if they tell you they can’t, there is a reason.

Just to keep this simple, if you go to a store to buy something and the cost is $50 then you should know the store you bought it from paid less than that or they would not sell it to you for that price. There are times that isn’t the case, like when they are trying to get rid of excess, or poor selling inventory but for the most part they won’t sell for less. So when it comes to insurance if they are only willing to pay $20 to a supplier for something the supplier has to pay $50 to purchase, you can see why the supplier won’t provide it. To put this is plain everyday English the insurance company makes the supplier a bad guy by telling a customer we pay for that product so not sure why they won’t provide it. Well maybe they should tell the customer they only want to pay half of what the product costs and tell them the truth. This thing is they won’t because they want you mad at the supplier not them, and if they were honest they know the customer is going to argue with them for it being their fault. Look people not any one of us would do this either we can’t take a loss like that and stay in business. Now the thought out there is that a supplier makes extra profit on other products and services so it makes up the difference. Well I am here to tell you that is blatantly false because the disability industry makes the lowest profit margins of everyone. Why is that, well because it isn’t really a cash market, and most of the money comes from insurance companies and not individual people. When we talk about retail business the prices are based on what people will pay, and the mark ups can be 200%. Don’t you wonder why they can keep dropping their prices and still stay in business, well that is why.

Now I am going to add another wrinkle to the problem. Insurance companies pay by diagnosis and allowable’s. so if you want a certain medical service of product, you need a diagnosis to qualify for that product or service. So to put this simply, if you want a CPAP machine, you need to be diagnosed with sleep apnea or an airway restriction. If you are not diagnosed with that then you don’t get that equipment paid for by insurance. The second part of that is if you want the top of the line CPAP machine, you likely won’t get it because the insurance companies allowable pays less that that machine costs the supplier, so they are going to offer you a machine that is less expensive to buy. To make this worse allowables are different from insurance company to insurance company and their contractual agreement with the suppliers. So one supplier may not get the same allowable as another so some suppliers may tell you that they can’t provide what you want because their allowable isn’t good.

Confusing right, well I have been in this industry for 13 years and the rules keep changing so it is hard for even me to keep up with everything. I am really trying to help people, and I do that everyday, I often say I could not work in my business if I didn’t care about what I do and who I do it for. I have said this before, if it weren’t for my children I would not do what I do because it is frustrating to deal with all these rules and regulations. Let me tell you almost everyone without fail in this industry does care about what they do because they often feel the same as I do. No not all of them understand everything we go through in a day but they do know the frustration of the industry so they often care more than you think.

Now I am not saying the insurance companies are evil because they have rules and they have budgets they have to follow. People really need to understand that money has to come from somewhere and it is not never ending. People make a big deal about politicians and how they can control this but it isn’t that simple. Medicare/CMS is in many ways more powerful than any one politician. It literally takes an act of Congress to get rules changed, so that is many politicians not just one. In all honestly they laugh at politicians because day to day they do what they want. Something else important you should know is Medicare makes the rules and then commercial insurance plans then say we follow Medicare guidelines, so basically they say we do what they do. Now when it comes to Medicaid there are only three states left that don’t follow Medicare guidelines, the rest of them do. That said some states have exceptions so they will cover extra but it isn’t common. The allowables are different between Medicaid as well.

In the end where you live and what insurance you have makes a huge difference. States that have a lot of state funding tend to be better places to be, so the north is often far better than the south. The trade off however is that those northern states are more expensive to live in so you have to consider this. There are however places in those expensive states where it is less expensive, you just have to go out and find them. This takes time and research so it isn’t an easy task. I could literally talk for hours on this subject because it is so complicated. My advice to everyone is spend the time, do research, and ask a lot of questions. As always this is not easy but there is help out there, look into case workers and autism centers for help, they often know the truth. What you don’t want to do is just do something quickly, because of you do, you might be very disappointed with your results.

Autism Podcast

Hi everyone, check out a Podcast I was on talking about Autism

https://www.buzzsprout.com/1744303/8838368

Medical Troubles

This post is a draft I started a few years ago and never finished, but since the content is still relevant I thought that I should just finish and post it. We are still currently working through this particular issue two years later so this is a condition that my son currently has and is dealing with. Technically my wife and I are still dealing with it as well but that is how it always is.

I know many of you have been where I am right now, and I also know that I will eventually get through where I am, but it is sure tough to be here. Both of my children have issues time to time but there are times when life reminds me that my children are in fact different than NT children, and no matter how hard I try, or no matter what I do, it will always be that way. Because my son is on the high side of the spectrum I sometimes think he isn’t as affected by autism as I know in my heart he actually is. I know I should have certain expectations and I know I should always strive for him to be the best he can, but there are times like this past weekend where reality slaps me in the face.

this story actually starts when I took the day off of work to go to a relatives house with my wife and the children. I did this because it is tough for my wife to handle both of them alone. This is mostly because of our daughter and the fact that she is almost my wife’s size now, but much stronger. Even though she is nonverbal and on the more severe side of the spectrum, she is very athletic. She routinely competes in Special Olympics and Spartan Race. Now this story is more about my son, but I thought it best to explain why I had to take the day off.

To set this up, my son has gained almost 60lbs in a year, and this is Med related. We wanted to get a handle on things because he is going into high school a year early. The early entry in HS is because we are closing the middle school in our town because it is old and not in suitable condition to have children there full time. The other 3 schools changed the grade arrangement per school, so since the 8th grad is the oldest grade it the middle school it was decided that this class would go to the HS. Knowing this, the fact that Z has gained weight and he is autistic, we thought he would be fair gain for extra unwanted attention.

At this point the decision is do we take him off of the Med making him gain the weight and switch it to another, or keep him on it. This is always tough as you know so we were weighing pros and cons. The truth is that he still had anxiety with his current meds so we thought a change might be good. We consulted all of the doctors and therapists and made the decision to make the switch. The plan was to step down the main Med and then once he was off of it then a new one would be introduced. The first week was ok but in the second week we noticed some motor ticks and they started getting worse as the time went on.

Now we are at our little vacation day with the children and with our main attention was on Chickie, we didn’t notice Z was having issues. Once it was brought to our attention that Z seemed to be struggling we saw what was really going on. Not only were there facial ticks but he was literally grunting and could not control his arms to keep them still. He complained he couldn’t control himself and his anxiety started to kick in. Well at this point we are now making our exit, but the problem was that we were an hour and a half away from home. Chickie was now at her end of being fully tolerant so the ride home was not pleasant. As the ticks and grunts got worse my wife made the decision to call the psychologists office for help.

Now I just want to make note here this is where the updated content starts to add a little to this story, as I said at the beginning it is still going on. So this psychologist office was of no help, the therapist was on vacation and no one filling in do no one else would help. Now just to describe what is going on here, my sone started with facial ticks but it progressed to involuntary movements of his toes and hands. What I mean by that is his ties curl in and his arms and hands kind oh jump around and flex. We ended up calling Children’s and set him up with the psych department which also included about a ten day stay at the hospital. He has had to do this about four times in the last two years. Thankfully we have Boston Children’s because they are fantastic. Anyway to also describe how bad this is when it happens, my son has to use a shower bench in the shower because his toe flexing makes it unsafe to stand in the shower.

Ok so after working with Children’s my son ended up being diagnosed with Tourette’s which was the cause of the involuntary movements. He was also diagnosed with a movement disorder. I know isn’t it great that you get all of these secondary disorders to autism, they just make things much easier, I mean hell. On a good not he did get set up with a movement specialist and he is outstanding. You can literally text him all hours of the day and he will respond to you. He has also worked with us on multiple med changes so he is a great help and resource for us.

Now to this day two years later my son is still having this issues that we have to work through time to time. He does struggle but we generally work through it. We are in the middle of some med changes and he is just about a month past another hospital stay, again at children’s. The good part of any is that all of his doctors and teams are all from there now so they all collaborate on his care. Yes you have to go into Boston, but they are really the best at what they do. My advice to anyone is if your child has complicated issues you should consider a pediatric hospital and working with all of their staff and departments. Everything just goes much smoother this way. You don’t have to make multiple appointments at different places and they can all easily communicate together. Having a dr on standby doesn’t hurt either.

Pandemic pandemonium

It is a crazy world we live in right now, and it can be a real struggle if you have disabled children. This virus is bringing out the worst in people, but it is also bringing out the best in people. As with everything in life sometimes the adversity makes you stronger, and sometimes it tears you down. There are a lot of people struggling right now, and a lot of people who are doing their best to help. People are on the front lines knowing they are at risk because that is their job and that is what they do. Being essential is not easy, but people in that position know this going in, but still chose to do it anyway. For those risking their safety for others it is just another day at the office. When the ashes fall legends rise, and there are a lot of legends out there right now.

Autism on TV

In the last few years there have been a few shows on TV representing autistic individuals. Shows like Atypical on Netflix and the Good Doctor on cable are examples of these shows. There is always a question when there is a series on TV about autism and it always goes right to the question of do the a actors portray Autism correctly. Then the second aspect of these shows that comes up is does the show do a good job reflecting how the word views autistic people. I know one of the first things that came to my mind is do these shows give positive or negative attention to autism in general. We have all heard the saying even bad publicity is good, but when it comes to autism I am not sure if that is true. as many of you know autism is a very wide ranging and complex disorder and not all autistic people are the same, even if they have similar traits in common. My problem in general with Hollywood is they always glorify things, and I am not sure that this is good for autism because I think they glorify the wrong things.

Ok so you guys want to know what I mean about glorification not being good. In my opinion Hollywood is more interested in the less effective side of autism where the individual has some over glorified ability that makes up for their deficiency. The example that comes to mind is the good Doctor. In that show the main character is autistic but he has an ability to see complex medical problems in his head and figure out what is wrong like he is looking through medical books in his mind. Now again this sounds great and makes people think that yes autism is a disability but look what an autistic person can do. Look I think anyone that can do that is great but my problem is they don’t go deep enough into that persons struggles. The first season of the show they did kind of do that, and a few times a season they do it again, but it isn’t common on that show that the doctor struggles. I think we all know why that is, it is pretty simple right, yup if the show was about horrible experiences and tantrums on every show then people wouldn’t want to watch it. Well guess what, that does happen with us in our daily lives caring for an autistic person. Yeah I get it no one wants to see the mass chaos that breaks out in our lives because it tends to be disheartening, and therefore not entertaining, but if the goal was to show what autism is, that isn’t it.

I have always thought that Hollywood would never put a show on with a severely autistic individual who didn’t have a special ability, and honestly I know it would never happen. That said wouldn’t it be refreshing to see a show like that where the goal of the show would be to show how the rest of the family is affected by the autistic member of the family. I mean you could really show the daily struggles of that individual and the family having to care for them and it wouldn’t be hard to do. you could show how others outside the family react, and how hard it is to get help and support. Maybe you could get into the therapies that a person with autism needs and the financial strain that it is on the family. Sounds great doesn’t it, wouldn’t that be nice for people to see? Yup it would but don’t hold your breath. Yeah kind of sounds depressing right, so who would ever want to watch that, the answer is no one because no one wants to admit other humans struggle to just live their life, and they certainly don’t want to be reminded of it after they have worked a long hard day. Let me let you in on a secret people we have to do that same long day at work and come home to chaos so we can give the other parent a break. I would even get into the parent that has been home all day dealing with that unbridled chaos.

Where this leaves us instead is we can only show the public a savant with these great abilities that does great for the world. I get it people want to be entertained and they just want to not think about the bad things going on in the world. Sorry but I just think over glorifying autism and pointing out its good points doesn’t help the cause one bit. I have had people argue with me and say at least people then know what autism is and that it is real. The problem with that flawed theory is that people think to themselves, yeah it has its bad points, but look those amazing abilities really make up for the struggles. Any parent of an autistic child will tell you live a few days in my shoes and tell me if the true reality changes your mind at all, something tells me it would.

To touch on another show Atypical on Netflix, it is slightly a different story. In this show the main character starts out as a high school student, and now by season four he is in college. I will admit on this show they do portray the struggles a little more and they didn’t give him this special gift so it is a little closer to real, but I still don’t think it goes far enough. One aspect of things that it does point out is the difficult dynamic between the mom and the dad, and how they cope with the world. Neither of them is perfect and they both do things that risk their relationship and family, so that is real in some way. It does also show that they both realize that they need each other and they both have to work as a team to get by. I also really like that they could easily just have called it a day since their children are older. It doesn’t actually say it in the show but I really think that they know the negative affect it would have on their child if they were to break up so they stick it out because of that. This my friends is where it is at because both parents need to work as a team to get the job done if you want your child to be as best they can be. Sorry I don’t mean to offend anyone and say a single parent can’t do the job because they can, but both parents working together makes things a hell of a lot easier on everyone. Unfortunately it is all to common in the autism world that the parents do not stay together because of the stress and pressure of it all. It makes me sad but that is life, and not all people can handle it and choose to bail out.

Ok so I am going to be honest and say no, not everything is bad because it isn’t, but we parents just find ways to enjoy the small staff. Celebrating a word said or a task completely is what we live for, and sometimes that is all we need. even in these shows they do celebrate the victories sometimes big and sometimes small. Here is the truth when things are bad those small things are what we live for and look forward to in order to keep us going. It is kind of like a little recharge after you feel you have burnt out. I swear sometimes my daughter cracking a smile, or giggling just makes my day. There is this light that just radiates that it is infectious, and full love and innocence you just can’t help but feel good. Why couldn’t one of these shows do something like that. Really show the struggle but then show the light and glow of the happiness autistic people have. So to end this out I think that while these shows do show you what autism is, I just think they could be more honest in the portrayals and expand a little more on autism in general instead of just showing a version of it that isn’t real. I really think people would watch but I get that it would be a tough sell to some people. I guess time will tell if we ever see it or not, until then I think I will think about my next subject to write about.

Pain of the Day

There are times when the difficulties of autism show their ugly head above and beyond normal life, and recently I am in that place once again. My daughter has a current medical issue that has been difficult on her and the rest of the family, but because of her autism it is far worse than it would be with an NT child. Chickie is 15 and in a residential program, which just adds to the severity of the issue, because my wife and I do not have full control of the situation. Look the school is great, they really are but the teachers are not parents so they don’t see things the same way that we do as parents. They do try but not having children the teachers have a hard time relating to the things that parents think of on a daily basis. My issue is that I still think that some things are evident regardless of you being a parent or not.

So to get to the point of this post, my daughter recently hurt her nose and it is pretty serious. Chickie does have self injurious behavior when she is upset so from time to time we run into issues with her. Don’t get me wrong, at 15 she does it less than she used to when she was younger but the problem now is she is bigger and stronger, so she has the ability to hurt herself more seriously. The second issue is sometimes she gets something out of the action of hurting herself, most of the time sensory related. Because of the sensory aspect it is extremely difficult to change that behavior. Really sometimes I think it is next to impossible because you literally have to actually give her something else to take it’s place that doesn’t hurt her. As always autism brings up challenges that most people with NT children just never have to deal with. Imagine your NT child liking to hurt themself and then on top of that actually enjoy it, and getting pleasure from it. Sometimes this stuff just boggles the mind, but I guess we just get used to these things and accept that they are going to happen from time to time.

Just to put some perspective on this, years ago when my wife and I first agreed to Chickie going into residential we had to agree that the school can restrain her if it is warranted and needed. Now they have to report to us every time this happens but the goal here is to stop her from hurting herself. Now let me tell you that was a tough decision to make, it is heartbreaking to tell the truth, but we knew if was an evil we had to agree to so she would be safe. Ok so to get to the point, Chickie is putting a finger in her nose and she is pushing through to the other side deviating her septum. At first we thought she was just picking her nose so when it would bleed we though she was picking it hard causing that. She does have nose bleeds here and their anyway because she would smash her face on the floor being upset. A few months ago we noticed what we thought was skin hanging down, and it proved to be exactly that when she was examined. She actually had a hole, and she was making it bigger by putting more and more force behind her finger. Now my friends we have a big problem because this is serious for a child like her as the action is tough to stop and an infection can be extremely hard to deal with for a lot of reasons. To make matters worse here, when we first reported to the school that we thought there was an issue and it was infected they really didn’t agree and the teachers didn’t even notice it. To give them credit when we brought up the seriousness to nursing they did figure it out, my issue though is these are the things the teachers miss. I mean when blood and fluid are draining from your nose you know something is wrong. To think that this was just a runny nose mystifies me.

Now at this point we have a serious decision to make, do we treat it with antibiotics and try to let it heal, or does she go to Children’s and have her put under sedation so it can be surgically fixed. This might sound easy but the huge elephant in the room is whenever something needs to be done medically she often has to be put under, and you don’t want to do it multiple times a year. When we started talking about this with the school the nursing staff and pediatrician want to let it heal, but the big question is how do you stop Chickie from picking at it because again she is getting something from it. The only solution to this problem is to put arm guards on her so she can’t bend her elbows. Let me just tell you, that alone is going to be a trigger because she has sensory issues with extra cloths touching her skin so arm guards are going to drive her crazy. This course of action is going to bring out hold situations and she is going to act out so that isn’t good either. The worst part is that we cannot take her home, because she will not wear them at home at all because home is her vacation from the demand routines she has in school, worst of all we are talking about weeks away. Last year was horrible with Covid, and we lost so much time with her, and now here we are again having to leave her at school. This situation is emotionally draining and soul killing, but it is something we have learned, we need to live with.

The decision was made to use the arm guards and let it heal, and it has not been easy. She has had outbursts and she has picked at her nose when they are off at night, and she has gotten them off and done it to. The problem with letting it heal is that the wound is scabbing up snd it is as I could imagine itchy and weird feeling in her nose, and she can’t touch it. Recently it cleared up a little but she got to it and it got infected again so we now have to get her to an ENT to see if we can surgically fix it because this can’t keep going on. Admittedly the school told us they have never had to deal with this, which is par for the course with Chickie, she is always full of surprises. Unfortunately the last appointment for the doctor she had, she ended up sick that day and couldn’t be seen so it had to be rescheduled. The appointment is coming up shortly so hopefully they will just fix it snd end this issue for good.

I just feel really bad for her because she doesn’t fully understand or comprehend this, but we do think she has figured out the arm guards are because of her nose. Her basic instincts to pick at it still overrule her understanding but we are hoping she understands this isn’t a permanent situation. So there you have it, another wonderful gift autism has given us that most people never have to worry about. The consolation to this is she is still having her happy times and they are trying to be less restrictive with her, but we just want her home. As they say time heals all wounds, we just need time to pick up the pace right now.

Schools, Schools, Schools

Covid was a rough time for everyone, but it was really devastating to what it has permanently done to our children’s future. Like everything else in the lives of a parent of disabled children, we got the extra benefit of the situation being worse for us than anyone. I know people hate it when they hear me say this but if you are not in our position you don’t have a clue how good you have it in comparison. If your car has four gears, our cars have five that is just how it is, and if you don’t believe that then you can switch places with me any day of the week and see how you do. No this isn’t meant as a bash fest to NT parents it is just the obvious truth that people fully understand but have such a hard time admitting to themselves. The truth is some of us don’t have that end in sight with their children growing up and moving out to have an empty nest, we have a full nest until we are gone. We also have struggles literally everyday for things others don’t have to think of. My choice of struggles I am going to talk about today is school struggles, and the struggle is real.

A few years ago I thought to myself, how do I really help my children and children like them, so I thought about the school system. Now I wasn’t going to go back and get degrees in education or anything like that, I am too old and have a family so I wasn’t going to start over again. Many of you know I work with the disabled so I already help in a certain way but it also isn’t something that would help them directly so I thought there has to be something else. Well one night I was watching our public access Chanel and I found that there were a few openings on the school committee so I looked into it and decided to give it a shot. There were some resignations so these positions were appointments and not elected positions so I wouldn’t be out collecting votes. I went to a few meetings and expressed my interest, but when it came to a vote for the open positions, I wasn’t picked for one of the two open positions. I was sad about that but I was ok with it, you can’t win them all. It actually came down to a tie breaker.

I had let the thought go until about seven months later when there was an actual election and there was very little interest in filling the the positions. I was approached by someone in town that didn’t think the tie breaker was fair and asked me if I was interested in running, so I reconsidered. I ran as a write in candidate and I was elected to an open seat. I was very excited because I actually received a lot of votes which was really a surprise, although a lot of people know me in town. The other members of the committee welcomed me with open arms and this began my term on the committee. I have to say I enjoyed my time and I learned a lot I didn’t know, but the most important part was I was making a difference in the lives of children. By the time my term ended I was vice chair which made me very proud because the other members trusted in me.

Now last year during Covid it was difficult to say the least because we had to decide whether to have the children in remote or hybrid. Meeting after meeting all summer long, and a late spring of failed remote was not helping the situation. The thought was that remote was rushed so if we could plan for it, then that would be better, I had my doubts, and I still think in the end our children have lost a year they will never get back. People don’t really realize that we were literally having to decide something that could hurt children, and that we had to have it in our conscience if something bad happened. It was a lot of stress and it was a lot of long restless nights. In the end because of being able to distance six feet and the ventilation was pretty good we went with hybrid. I can tell you the union fought that to no end because they wanted full remote, and it wasn’t just the district, it was the state as well fighting us. We had a strong committee so we were not willing to give in because we knew it was best for the children. the thing is most of us had different backgrounds and expertise but we all worked very well together.

By the time summer was over and we were solidly into the fall, the two a week meetings, and the late meetings were over, but it left me exhausted. During this same time I was also opening a new branch office in a new state at work so I had zero free time and I was burnt out. During this time my wife and I were also fighting for out of district placement for my son because he desperately needed it. I let her handle most of it because I was on the committee and I didn’t want a conflict of interest. The fighting got pretty bad so in the end I resigned my position a few months before my term was up because I felt really weird fighting with the district I was on and did not want to be accused of using my position as a means to get what we wanted. Trust me when I tell you the district wasn’t playing favorites and they were not giving in. I will get into that story in another post but it is still going on six months later. The whole fight has been over a year, close to a year and a half. Just as the district wasn’t giving in nether were we, and we have 12 years of experience so it has been a prize fight. I am not sure they have been up against parents like us, but they will sure remember us. We didn’t give up for our daughter seven years ago so we were not going to give up on our son. She got what she needed and so will he.

The advise I would give others is don’t get pushed around, don’t give up, and go in loaded for bear. You have to be prepared and you have to come in with experts and paperwork from them. Even then it is still hard but at least you have a chance. Know your rights and fight for them, your children’s future depends on you. If you don’t understand the law, learn it, and know it. If all else fails get an advocate or a lawyer if need be. My wife and I fight on our own most of the time because we can, but if you are not equipped to do that get help. Look to be honest, the schools can’t just give up expensive services to everyone if it isn’t required, but if it is and you can prove it fight for it because no one is going to be nice and give it up. This is actually a good life lesson, going with the flow and just trying isn’t good enough, you have to go in armed for battle and fight until it is won. No quitting, and no quarter given because your children need you.

It’s been a long time

Wow, I didn’t realize how long it has been since I posted. To be honest it has been way to busy to sit down and write so I have kind of just let things go. I used to say that writing was always my way to relieve stress and to decompress but in all honestly life just took its toll and took up my time. There are so many things I can write about from the last year that it was a little difficult to actually pin down what I wanted to write about. In keeping with my tittle let’s talk about how time goes by but sometimes we as humans tend to fall back to our base instincts to make our lives easier.

Let’s face it 2020 was just a crazy year but one good thing about a pandemic is it gives you time to think about a lot of things. I will come right out and say there was no vacation for me, I never stopped working and things at work never slowed down for me. For those who don’t know what I do for a living, I work in healthcare, and service the disabled. Business was slow once Covid kicked in and the company I work for was forced to furlough people, but I am an operations manager of multiple branches so for me it was same as usual, well a little more stress and a little more coordination and chaos, but my basic job didn’t change. Since I don’t work in the field I was able to work from home and wasn’t exposed but I still had to worry about my staff that did have to go into the field. There were days I would think to myself, please let them be safe, and please don’t like them get infected.

It was a weird world for me because like many I only left my house to get food and supplies, but I tried to only do that once a week or more if I could. My company was very nice and supplied me and the other staff PPE for person use so I really didn’t have to worry about having to find it. In regards to PPE my branches were also ok because since my OCD guides what I do, I always have to know that I am stocked so while other places were running low, my staff had what they needed because we started out with plenty to hold us over while the world struggled to get theirs. I was actually able to give some to other branches I had so much. Life lesson here people, always be prepared and think ahead.

Ok so I can’t take full credit for learned the life lesson of being prepared, I have to give autism experience the credit. For those that don’t know I have a 16, and 15 year old child, both on the spectrum. They were diagnosed at 3, and 2 so many years of experience. If you are not prepared in my situation then you are going to suffer for it, so I learned long ago, you leave nothing to chance. As The old saying goes, you prepare for the worst and hope for the best. I have to be honest, sometimes the hope goes out the window. I am also going to tell you I don’t like to lose anything so there is no way I am letting something, or someone best me without a fight. My fight or flight is fight every single time without exception. I really think my mom instilled this in me because if I lost at anything she would say so you lost again huh. I sometimes think it was her way of saying you better try harder because you are better than that.

A funny story about how much I will fight to prove someone wrong was my high school experience. My older sister was 4 years ahead of me in school, so when I was at her graduation with my parents there was a student who won what they called the miracle award. Ok so you are asking what is the miracle award, well that is a student not missing a day of school throughout high school. My mom and dad said to me you could never do that, and they said that because I wasn’t highly motivated by school so I didn’t care if I missed a day. Now without sounding like a pompous ass, the reason for that was mostly because I was bored. I was a straight A student who never had a hard time so even if I missed time I was still going to get an A so it didn’t matter to me. Ok so back to the story, guess what happened during high school, yup you guessed it I went 4 years and never missed a day, and I got that miracle award, and it was the first time it happened since I witnessed it at my sisters graduation. Not to drag this out, but my friends threatened to tie me to a tree across the street so I could see the school but couldn’t go in. As soon as I walked off the stage to a standing ovation I pointed at my parents and said I told you so.

Getting back to where we started, as bad as Covid has been, my family and I got through and we did pretty well. Fortunately for me I think my whole life prepared me for this pandemic and I was able to get through most of it because I was made for times like these. The more it threw at me and my family the more I fought through it, and the more I resisted. The more it got worse the more prepared I was. Look I didn’t go through with no scars, no one did but it could have been much worse. In my free time I would reflect on the past and what life lessons I learned. I would also think about things coming up, and what I needed to do in order to make it easier, and I have to tell you I succeeded more than I failed. Covid did take a toll on me, and so far 2021 has been worse than 2020, but as Conan said, that is a story for another day.

Welcome To The Teens

It is now official, I have two teenagers in my home. My son Z is 14 and my daughter Chickie is 13. Now my children are not your ordinary teens they are autistic teens so their story as usual is a little different than usual. Most people of two teenagers are preparing for dates, dances, what phone you are getting them, parental controls, and all sorts of rebellion, but not in my house. My house is much different than normal, it always has been, and always will be.

Let’s start with my son Z who was a teen last year officially. Z is in high school but normally would have been in JR high so there was worry when we knew he would be going to high school a year early. This happened because our town had to close a school so we had to move the students around. We are in a small town so there was no other option. The first worry was of course the thought of younger children being mixed with older children, and that made us worry about bullying. Fortunately that worry was not a real worry because he went through the entire year and the opposite has been proven to be true. Instead of the older children targeting and bullying the younger children, they are working with them and helping them find their way in a new school. The younger children look up to the older children, and the older children are being models of what children should be.there have been other issues in the school but nothing related to Z or other disabled children.

The other worry we had was that Z would not be able to make friends and handle his classes. The class structure is high school based so we were not sure Z was ready. Now we were not going to mainstream him but we still worried. We did put him in a few mainstream classes but they didn’t work out. It wasn’t that the other children were a problem, but more because as the content changed as the year went on and became more than he could handle. This issue once again proved that Z was not your average 14 year old, but more like a 10 year old. It is always the same in that you have to temper your expectations and not expect your autistic child is going to perform like their peers.

Z is very smart and if he could use his tablet to learn and research he would be far better off. He learns from hearing and seeing and not from reading comprehension. He did miss almost the last month of school because of Med issues and a new diagnosis of Tourette’s. This Med issue caused him to gain 60lbs in a year. He now has a lot of Homework to catch up over the summer but he is working through it.

Chickie went through her Med issues as well which caused her to have high anxiety and less tolerance. We have been working with the school but it is never easy because the nursing staff her house team and the doctor all have to come together. This meeting happened at the beginning of July and we finally all agreed on an adjustment and increase to some of her meds. This is never easy and the frustrating part is that as parents my wife and I are very experienced when it comes to autism and our children but sometimes people just think they know better than we do.

The situation with Chickie was tough on her and us because she wasn’t able to participate in school events or events with the family. She just couldn’t tolerate the people, the noise, or her surroundings. Since we did do the Med change everything has turned around and she is much happier and able to tolerate the world. She is still hard to handle in certain situations and her mom has a hard time handling her. The biggest issue is that Chickie knows my wife can’t handle her so she uses that to her advantage, which is very frustrating for my wife.

I have to say I expected that Chickie was going to develop early because her doctors told us it would happen. We were really hoping they would be wrong but they were not wrong at all. For me as a dad it is really hard to get used to the idea that I have to help her in the bathroom as she isn’t fully potty trained. I know I am her dad and she is disabled but it is just a little weird because she is fully developed. I am dealing with it but it isn’t easy. I try to think that she is really a toddler in a 13 year old body because that is exactly what it is.

Look considering my last post and that issue we have our hands full in my house. The positive thing is that both the children are in general happy children. My daughter in particular is a very happy child, and her innocence really makes me smile sometimes. For his part Z also is innocent to but he also is showing some rebellion as well. I honestly thought my daughter was always going to be much worse because of her issues, but I have to say he is a challenge to because he can comprehend things but not at his age level. He doesn’t know he is being treated poorly when he actually is. Maybe this is a me problem because I care more about how my children are treated, or how they are struggling than they do. This is the life of an autism parent, and I should be used to it by now. Truth is I don’t know if I ever will.