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.

At The Beach And At The Splash Pad

I know I have not written anything in a long time. I have really tried but having tow teen ASD children, working in two locations, and being on a school committee takes up a lot of my time. When you read what I am about to write I think you will agree faith in humanity can always be questioned, and that as ASD parents we have more than just our children to worry about. The honest truth is that as we all already know, we just deal with things your everyday parent doesn’t have to deal with. I am going to describe a situation my wife and I dealt with over the weekend while out with the children. I am going to write her exact words as she expressed them to people. I think it is important for you to hear it from her and not my interpretation. First however I will comment on the situation.

This has a little to do with bullying but not in a general sense. I will also admit that NT children are bullied and they also deal with the emotional stress that it comes with, however there is a clear distinct difference when it happens to an ASD child. Now every NT child has the misfortune of being fully capable of understanding what is going on, which brings social and emotional stress, and their parents also have to experience the same. This causes depression, lack of self worth, and in extreme cases PTSD, but for a disabled child and more importantly their family things are far worse.

I have heard it said if the disabled child isn’t cognitively able to understand the situation it is far worse for the NT child. The problem with that theory is that sometimes you have a disabled child that knows enough to understand what is going on but doesn’t fully comprehend it in all of its complexities. Then to top it off you have to try to explain things in a way that they can understand, all while trying to protect them from things you can hide from them. I know you shouldn’t hide things but from them but what I am talking about is the fact that there are things they understand to some extent but you feel you can protect them from other details that you can leave out for their piece of mind. I am sure you understand what I am saying.

So my children are 14 that is Z, and 13, who is Chickie. In case you don’t know Chickie is on the severe side, non verbal and at times self injurious. She is in residential schooling where she has been since she was 7. She has made leaps and bounds while there, which is something we could never have given her at home. We take her home on weekends and holidays for the most part, but can take her out when we want. Z is in public school and it low to moderate when it comes to ASD, he has Tourette’s and anxiety with ADHD. He is socially awkward and is currently overweight because of his medications. We are currently working him slowly off the Med that causes the weight issue.

So what you are about to read is what happened to us as a family and more importantly my children over this past weekend when we went to a beach at a local pond and a splash pad. You will all understand why as a parent that this is so horrible and makes you question humanity. Just when you think society has learned to become more tolerant, you are reminded we have not come as far as you would have hoped.

“Bright side of what I’m about to share is my children, both of them had two great days swimming, splashing, seeing family and just being a complete family without the knowledge of the disgusting and disgraceful behavior going on around them aimed at them. Normally I would do what I did and cry the whole ride home from leaving Chickie at her residential schooling for Autism after watching her tantrum, cry and look me in the eyes holding on to her seat belt using two of the handful of words she has, “more” and “help”. Commonly it takes me a day or so to bounce back from that episode alone when Chickie doesn’t do well transitioning back but nope, not tonight…. seeing what she went through and what my husband and I had to experience pulling away while she’s pointing at the car so the teachers could calm her down, this alone when it happens breaks me inside but coming off this last week of experiences I’m just angry.

I took my son to the pond near our home this week for him to be hit in the face with a float, called annoying repeatedly and horrible names while he was trying to interact socially with other children. While I tried to figure out who the parents were while I boiled over where I sat, the children were called out of the water and made to leave with their father. Due to my son’s autism and social disability he had no idea any of this was directed at him and laughed when he was hit with the float. Fast forward to Saturday, back to the local pond with both our children for a family day we have rarely had in a couple of years and yet again, Erik and I are met with our son being called a “stage 5 clinger”, “must ride the short bus”, but no, not by children by full grown adults, 3 adult men and 2 women there with their children enjoying the water as well. Said loudly enough for Erik and I to hear it was made clear WE were the disgrace for letting our children just float out there interrupting their day. While using vulgar language and teaching their children to just follow in their ignorance Erik and I let our kids enjoy themselves for as long as we could before things got ugly. Anyone who knows me, knows I have NO problem going up one side and down the other of the biggest guy in the room especially when it comes to my children and/or my husband but Erik and I were left again in a compromising position, Chickie doesn’t have the cognitive ability to know the difference and thankfully our son is innocent to this behavior because we build him up and make him understand everyone is special, matters, is owed respect and kindness and believes in his heart he is just like those around him.

We packed up after thankfully 3 great hours of what was an amazing day for our kids and went home. Today we ventured up to Derry, NH to visit with Erik’s parents and meet at the splash pad we go to every summer. Again, the kids did great, Chickie had a few hiccups but over all a great day and my son enjoyed the water, kept to himself and did nothing but enjoy his time there. While I sat with Chickie on playground equipment singing with her to buy more time, I got full view of two yet again, grown men sitting on a bench along the splash pad make jokes, laugh and even pointed at my son as he passed by them several times while doing what he loves, walking and what he calls dancing. They used words like the R word and made fun of his weight and size. I chose again to sit and continue to be a mindful adult and parent and called my son over to sit with us for a little bit until I could cool myself down. We then dropped Chickie off, she screamed, cried and slammed her head on the lawn outside the car while also rolling in the grass and Erik and I tried to get control of her. To watch this after experiencing such disgusting behavior especially from adults left me crying but now just plain angry beyond angry. This is not a pity party, not about me or Erik but about having decency and respect for others, any single person let alone disabled children.

I’m fairly proud that I contained myself but felt that I did what was in the best interest of my children and Erik did the same. To those that took the time to read this PLEASE be kind, not every person that looks fine is capable of caring for themselves and each and every one of them adults, children any single person with any disability has a family and parents that love them and long for nothing but safety and happiness for them. In the end, I can put my head down tonight knowing we gave the kids two great days and other than Chickie’s terrible transition back to school there were happy memories made for them and smiles shared. My girl is resilient and doing just fine now on her bed playing with her babies. I feel better getting that out. Thanks to all who listened. Much love to you. xo Thank you to my husband for being strong, kind and knowing he had to make the best of a tough situation because that is what was best. ”

There you have it, discussing behavior from grown adults out in public. The language that again grown adults used at the pond was a little bit more graphic than my wife actually wrote, but she chose not to elaborate, but I assure you it was bad. The choice we made was that as parents we heard what was going on, and while every fiber of our bodies told us to lash out, we chose to stay silent. As a started this post I described that keeping things away from children is actually to their benefit. Making a seen in front of my son would have been far worse that something he didn’t realize was going on.

In the end it is what it is but it by no means was easy for either of us. After chilling out and calming down at home we did come to terms with the weekend, however neither of us forgot it today, nor will we anytime soon. Stay strong out their my fellow ASD parents, and keep up the good fight. Society isn’t getting much better lately but as usual we have to stay strong and never give up the fight.

Teen Troubles

Now that I am done with the catch up posts I will go back to what I always do and write about autism. I am going to try to not be judgmental but we will see how it goes. Ten years into my autism journey and I find myself far less able to hold my tongue and keep my thoughts to myself. Well ok, you got me, I wasn’t really good at that before, however I did have more of a filter in the past than I do now. I guess I just don’t care what others think anymore, and I just don’t have time to to deal with people not understanding, and being ignorant. As all of you know, autism never goes away, and although it sometimes gets easier to deal with when the children get older, it generally just mutates into a different form.

my oldest, my son Z is 13 and his sister, is 12, and both of them have been going through some issues lately. The issues revolve around hormones and behaviors brought on by them. All of us who have our children on meds know that a particular Med or combination of meds only works so long before you have issues. Generally it revolves around weight and the dosage of the meds so a little tweak in dosage generally does the trick. Sometimes though you have to change to another Med entirely, and when that happens things get tricky because you have to start at square one and play with dosages until you get it right. Most of you know it often takes weeks before you get it right, and in that time you are going to have some rough times. I think we all expect this, and we all question whether meds are the right thing to do. Most of us come to the conclusion we need the meds and the transition without them tends to prove that true.

Right now to add to the Med changes we are dealing with puberty in my household, and not just one child but two. My daughter is developing early due to what we think we’re meds she used to take, but it is so hard to tell for sure. The way children are developing these days it is hard to exactly know if it is meds, it is foods, or if it is the environment itself. No matter what it really is, we just have to deal with it, and it isn’t worth the time to grasp at straws and figure it out for sure. I have gotten into the Med battle, and I have gotten into the food battle before so I won’t do it here. Maybe I will in another post sometime but not right now. This is one of those times where I remind myself that I just have to get through the transitions and things will work themselves out.

Chickie has come a long way since being in residential, and she tends to deal with changes better than she used to. Other than her sensory issues, transitions have always been a problem. The school suggested that we let them have her more, and not take her home as much, and as much as we were against it, we knew they were probably right. We did try this and it has helped, but it has proven she still needs her home time as well. It took some time but we now have a combination of school and home time that works so we have tried to stay with that balance. When we do veer from that balance we do see pretty quickly that we shouldn’t do that. She really likes her home time to be just staying home and chilling out because she is under demands and schedules at school, so we let her do that as much as we can. I can say puberty is rough on her, with the irritability and the cravings, so when we know that is going on we try to back off even more.

When it comes to my son Z he is high on the spectrum but he has social, emotional, and anxiety issues. He has had some struggles lately because his meds have caused him to gain a lot of weight over the last year. This is very concerning to us because he is going into high school a year early because of the closing of the middle school in town, so that change is going to be tough on its own. If we add the weight gain to this equation, it just gives older children an extra excuse to be mean to him. I have to say the school system doesn’t have a rampant problem with bullies but it can always happen no matter how good the school. Z has also had to get back involved with intense therapy again as his anxiety and thoughts on the world have changed a little. We have now made the decision to take him off the Med that is causing the weight gain while he is off for the summer so we can get things under control before the new school year starts. What this means is we have to work with another Med and dosage combination and that is never easy, it also means no summer school because that extra anxiety would be really bad. I know we will get there but it is going to be a rough summer for him and us.

I have to say our original thought of having children close in age has come with a price. We thought we would have a few children and go through rough times early on and when they got older it would be easy because it was all at once. At the time we never considered autism, or even knew what it was, so now having two autistic teens at once is something we could never have foreseen. As many of you know, it never ends with autism so you just have to chug along and make the best of it. To say this has made my wife an I stronger people is an understatement, I think it made us superheroes. We will just handle these struggles as a team as we always have and we will get through it. We always end up telling each other it could be worse, and it could for sure, but it will definitely never, ever be entirely easy.

The Journey Thus Far Part 3

We left off the last post with my daughter struggling because of a lack of medical care. Throughout our time in Florida we had gone through multiple doctors and specialists and no one seemed to be able to help us. This was a common theme with the medical professionals in Florida, and that was that the goods ones we did actually find all recommended we move back North, so that we could get her what she needed. One thing I haven’t really said before is that the stress and anxiety that my daughter was going through made her get so upset she would often tantrum and vomit whenever she went to a doctors office or hospital. She had been in and out of offices and hospitals so much that she really didn’t want to go to either after a while.

The last straw was that we had to drive almost three hours to bring our daughter to Children’s hospital because all the local specialists said she was beyond what their experience. After a few appointments with lower level doctors even there my wife was referred to the head of Psychology. The day of the appointment my wife really had a hard time getting my daughter into the hospital, then the elevator, and then the doctors office. When they finally got into the office it literally took minutes for the doctor to ask my wife where she was from. He said he could hear the accent and he knew she was from New England, so she said Massachusetts. He then said you really should move back home, Florida is 20 years behind and even his hospital wouldn’t be able to help. He suggested residential or at least a really good day program, which Florida had none of. That was the last shoe to drop and we were making plans to come back home.

Moving back home meant I was going to be leaving a full time job again to a place I had nothing set up. In case you didn’t know it is tough to find a job in a state you are not living in, especially if it is five states away. I was back to working in retail. Even though we were moving back to our home state, we still wanted to find a school for our daughter so we contacted the school about admissions and then looked for surrounding towns. Not to take credit my wife did all of that while I was still working and it literally took weeks of research. Once everything was set we were set to move, but Florida wasn’t done taking things from us yet even though we were leaving.

As I mentioned before we were paying for therapies and all the other things that having two autistic children require. During the last year we were in Florida we had to sell off our possessions just to get by, and that included everything worth any value. The only thing that was off limits was anything that the children had or we needed for their care. It got so bad that my wife and I both sold our wedding rings to be able to afford the move and get back home. The move took 4 days because we had to stop repeatedly for the children so the hotel and food costs were more than we expected, and to make things worse we didn’t think about the tolls in NY. You see we were not thinking that because we had a trailer it basically was the same price as a cargo truck. We pulled up to our new place, which we could not move in yet and just could store our things. We were literally running on fumes with very little room for error on the way back. To make things worse my company didn’t direct deposit my last check and it delayed us getting the check for days while they mailed it. Fortunately for us some of our family members took us in for about 3 weeks while we waited for my check and our monthly SSI for the children.

Once we were settled in we had our daughter evaluated at the school we chose and they recommended residential because of how bad her situation was. I won’t get into details as I have done that in previous posts but the fight to get her into that school took us a year and a half. For me I yet again had to work in retail for very low money until I found a full time job 4 months later, but that job was an hour and a half away from home. We didn’t have a choice so I lived with relatives that lived closer to the job half of the week and the other half I commuted. To call this rough on the family is an understatement. I did this for a year before I found my current position but when I was hired I went in at a low wage because my boss at the time was giving me a chance to prove myself. Just to clarify this situation that company was acquired by my now current company. As most of you know I did prove myself and I did it pretty successfully so my pay has jumped up multiple times and I now manage in two branches and am one of the most skilled managers in my region.

The town we moved to has been great to us and many people and organizations helped my family with anything we needed. Community and church organizations helped us get back on our feet and went above and beyond to make sure our children received everything they needed. I cannot thank everyone enough for helping out. I did join a local community organization where at different times a year I volunteer my time in community events and raising money for local charities. I have also been elected to the towns school committee where I can also help the children of the district get the best education they can. I just feel I owe this community for everything they have done, and maybe I can help others get back on their feet as others did for me.

To close this out and give some perspective, I am now ten years out from the time I left my full time job and moved to Florida and left the great job it was. With my added responsibility and my promotion I am finally back making what I was back ten years ago. Now this is great and I am very happy about that but because of that we lost SSI for the children, so this means I didn’t really gain any ground financially but it does mean that we are making our way on our own. This also means that my wife can work and have it not affect SSI because we have already lost it. Prior to this is she would have worked it would have been for nothing, but now her working will actually put us in the black financially. I am so proud of her as she just got her real estate license so she is now a realtor. This let’s her still have the time to take care of the children, but also bring in some extra money.

If you really want specifics on this three part story please check back in my archives and read my posts it will break things down. I just wanted to do a little refresher as to what my story is. As you can see my family has gone through some rough times, but because we fight and continue not to give up, we have succeeded despite some tough situations and tough odds. Life still isn’t easy and most likely never will be but at least I know all the sacrifices my wife and I have been through have been worth it. I can sleep at night because I know my children have come first and always will. If you ever wonder why I sometimes call out people for not doing the right thing, you know where I am coming from. Now the one big thing left to do is pay back my very expensive student loans, which will be paid off when I am about 80 or so. Any and all donations to the payback my college fund will be accepted, just kidding, but not really.

The Journey Thus Far Part 2

Last we left off I had decided to leave home and move to Florida where we would be close to relatives. Leaving home meant leaving my union job of 17 years. I had been off on leave for the past few months because of my blackouts but because my head was not clear and I had everything else in my life going on I just couldn’t imagine going back there. To be honest the stress of what was going on at work with other employees was a lot, but I think if I had been stronger I might have done things differently. I did have to think of my family and my two now diagnosed autistic children as well as, my wife so things were complicated. Just to make note of this, but me leaving my job meant cashing out my savings and retirement and moving multiple states away with no full time job set up ahead of time.

My wife had done a good job finding a place to live and setting up or home in a really nice house so at the beginning it seemed like we had a fresh start in life. I had also made the decision shortly before I left my job to enroll in college as a full time student. I thought that getting a degree would open up some opportunities for me, and after years of doing service work out on the road I might be able to get an office job. After a few months and no luck finding a full time job and finances dwindling I had to swallow my pride and take a part time job. To put perspective on this, I was making just short off six figures with OT at the job I left and now I was forced to work part time for just above minimum wage. I ended up finding a job unloading trucks for a retail store which I felt was below me and I felt very bitter that I had to take it, but I had to do what I had to do. I did do what I had to in order to provide for my family but I was be no means happy. I did get to full time after a few months because I basically outworked everyone else there because of my work ethic. I couldn’t work at the speed of Florida it just wasn’t in me, I am and always will be a New Englander.

while I was busting ass unloading trucks and stocking shelves I had my resume out and one day received a call. The call was from a company who sold and repaired power wheelchairs and they wanted me to work for them and were offering a full time position with a vehicle. When I interviewed with them I asked why they thought that I was the one for the job, and they said from what I had repaired in the past and the fact that I would take a low paying part time job that I would be a great for them. As it turned out this job would change my life and change its course as I knew it. Once I started helping disabled people it gave me a new sense of purpose and a new outlook on life. The children were also changing the course of my life as well but for a different reason.

At this point my wife and I had burned through all of our savings and found that Florida was by no means autism friendly. As the days turned to weeks we were beginning to notice that our daughter Chickie was spiraling out of control and that we could not find therapies or medical care that could help her. My son Z was struggling as well but since he has on the high side of the spectrum he was easier to handle. Since the state didn’t offer much we had to apply for an autism grant to help pay for a summer program mostly for my daughter but really for both children. We did get the grant but it wasn’t enough to pay for everything so we had to pay $4000 a summer for them to have care and therapy all summer. The summer program was not a full day and it was almost two hours away which was not ideal. Because of the distance and the cost of gas my wife would drop the children off and then wait around locally for 4 hours, and then pick them up and drive them home. To travel the distance to come back home was just not worth it. My wife spent her time doing medical transcription out of a packing lot where she could get a WIFI signal from a hotel. Doing this out of our truck was not ideal but she did what she had to do.

We did luck out and find a preschool teacher who was amazing and who worked well with both of the children. She took to them, and they took to her right away, and the bond was strong. To this day she sends them cards every year on Christmas and their birthdays, and when we went to Florida to pick up our final storage last year she met us and gave them both gifts. She really cared for the children and she gave them a great start, but they really needed more after school hours. Since the state would not pay for anything and we were out of money for services we all struggled.

When the children were out of preschool things did not go to well for us. My son transitioned better but since Florida did not separate the different levels of autism or special needs he was put into class with other students of all abilities. Things went well for the first year but in the second year in first grade he all of a sudden would not go to school. It wasn’t just going to school he would not even get in our car or leave the yard. After the principal and his teacher would not admit to anything we requested a meeting, at which time they said maybe he was a child who just didn’t like school. This did not go over well with us as you could imagine but we had no proof. Well that was until an aid who worked with our son blew the whistle a day later and told us another student was violent with other children and my son hid under his desk. Let me tell you when we went back it was not pretty because they again lied and said they didn’t know, but we know they did. We had to keep him out of school for the last month of the year, and in the fall he went to a different class and a different teacher.

For my daughter she would never go to kindergarten full time no matter how hard we tried to get her to go. My wife had to try to bring her at one hour at a time intervals but the most we could get her to do was two hours. My daughter would get so upset she would vomit. This is when we had to get her on her first meds to try to calm her down. Even being at school she was not learning anything so it was more of just killing time. The rest of my daughters day was spent at doctors appointments and riding around in our truck watching DVD’s and listening to music while my wife drove around. This was the only thing that would calm her down and keep her from not hurting herself. My wife was able to get her home on occasion and take her into the pool for a while, but my daughter has never liked it when it is really hot. This of course was when we could afford to keep the pool running and chemicals in it, Florida was tough on us.

Medical care for a severely affected child like my daughter was hard to come by and in some cases non existent in Florida. Nothing brought this home more than when my daughter was having a reaction to a medication and was really out of control and tantruming. My wife and I didn’t know what to do so we called an ambulance and soon after they arrived. When the EMT’s came in and saw what was going on one of them had me restrain my daughter and hug her tight. He could see she was having a reaction and told me to keep holding her until she tires out. He told my wife and I even though he and his crew would get in trouble, they would not leave until she calmed down. He told us that we should not take her to the hospital and we should not call the police. He told us that we were her best option. It took 20 mins to calm down, but she finally did. He went on to explain that he knew about autistic children and that he knew how severe she was. He said he could hear my accent and said why are you here, you should be back home, Florida can’t help her.

One of the things that hit me about the EMT was that he said the hospitals don’t know what to do with a child like my daughter, and if we called the police repeatedly they would just call social services which would make things worse. He knew what he was talking about and he was completely right, we came to understand this better a year or so later. Just in case you were wondering the EMT and his crew did get in trouble and were questioned about why they were on site so long. My wife did speak to his company and let them know that he helped our daughter more than a trip to the hospital would ever have helped and that they should have more people like him at their company. This was the first time medical staff would tell us to go home but it wouldn’t be the last.

So as you can see, life was tough and there were some good moments but they could not override the bad ones. In the next part of the story I will get into the end of Florida and our move back home. Just as a preview, coming back home was better than Florida but by no means were we out of the woods, we had some tough times even back home, but things did not get better for a few years after that, stay tuned.

The Journey Thus Far Part 1

Since I am now back into the swing of things I thought I would write about where I came from and where I am now. It is hard to believe my autism journey has now been 10 years, time does go by fast. My children, my son Z was three and my daughter Chickie was two when they were diagnosed with autism. Now at 13, and 12 respectively it is hard to imagine them any different than they are, but before I knew about autism I would never have believed life could be so rough. I will never say I am ok with the children being autistic and I will never say I wouldn’t change them if I could because it isn’t my life being rough that I would want to change it is theirs. Prepare yourselves, this is a wild ride and I am about to open myself up in a way I never have.

When my son was diagnosed we never even considered his younger sister had anything wrong with her because we were so worried about him not speaking at three. When early intervention told us they needed to come back to evaluate my daughter it was a total shock but it shouldn’t have been. To then find out that she was severely affected by autism was just crushing to my very soul. Not knowing about autism at all and then to find out we had two autistic children was a very dark day for my wife and I. When we found out what autism was and what it meant for our children was just like getting punched in the face out of nowhere. We had no resources and lots of questions so to say we were in a new world was an understatement.

At the time I thought I was young and I could handle anything but the truth was I couldn’t. I was already having some struggles at work with some other employees and a union battle so the added stress was a lot on me. To add to this I had a pretty big financial dispute going on with my family and some property I owned with them. I will not really get into high detail about exact situations because I don’t want to open old wounds, but I will explain a little. What I will say is that there were things that could have been done differently on both sides, and I regret not doing things differently. As the housing market was crashing and utilities and the cost of living was increasing the cost of a multi family house was becoming extremely difficult to keep up with. I was just married to my wife for two years and my children were really young so I had to make the difficult choice of asking my best friend who rented from me to leave so my brother could have his own apartment. I was trying to keep everything going but even with my wife working as well the house was no longer affordable.

The issues related to the house did involve my brother and while I was working my wife was trying to help him with finding a new job and get a diagnosis. He really didn’t like his job and when he went on interviews the companies told us that they knew he was not NT but without a diagnosis they could not hire him as disabled. My brother is now diagnosed with autism but he wasn’t back then. I don’t think my sisters liked that my wife was helping him while I was working. I believe this caused a lot of hard feelings because the impression was that I was not as highly involved as I was . In the end I ended up loosing the house we both lived in. I don’t think I helped the situation by borrowing from the house to finish a lift and make an apartment out of it. I did it so my friend could live there but also because it would increase the home value.

Thinking back I should have told my sisters everything that was going on much sooner but I didn’t. I really don’t know if them knowing how bad things were sooner would have changed anything but I think I should have tried better to communicate it. Truth be told my social anxiety back then did give me big issues when it came to conflict and difficult situations. I ultimately lost the house to foreclosure and I had to file bankruptcy . I did try to sell the house first but since the family relationship had been strained we could not come to agreement on a price. As much as my sisters may not believe it I have a lot of guilt I carry and have carried from the start. I had to choose my children over my other family, more specifically my brother so it hurts me deeply that I let him and everyone else down.

Now at current day my brother has an official autism diagnosis he is working, and receiving housing benefits. I was really trying to do this for him back then but emotions and a tough situation stopped it from happening. I feel so sad and guilty that this was what I tried to do originally but failed because my relationship with my sisters and the relationship between them and my wife lacked trust. We all let emotions get in the way and we don’t speak to this day, over ten years later. If I was able I would do things much differently and I would have been more proactive.

Claiming bankruptcy having my house foreclosed on, and having a vehicle repossessed was rough but life was going to throw me another curveball. My best friend who I had asked to move out during the whole house debacle was having rough times that I never even noticed. He had lost a really good job and had to take one that didn’t pay as much about a year before, which he didn’t like in any way. He then felt as he had lost me because I was married with children and was not able to spend as much time with me as we used to. I still don’t know exactly the circumstance but I received a phone call from a mutual friend that he was living with that he was found unresponsive in his bed when he hadn’t heard from him. He was already gone by the time he was found and it was to late for anyone to have saved him. To say that I was devastated is not even close to how bad I felt. I felt defeated, I felt guilty and I felt like I should have know he was struggling and I should have know he was hurting, and above all I should have been there for him, and I wasn’t. I think back and ask myself why didn’t I see his pain and notice he was in a bad place in his life. I know I likely couldn’t have changed anything, but maybe if I had reached out more he would have opened up to me. I guess I will never know, but that still doesn’t stop me from thinking about it time to time.

At this point I had moved to a house we had rented because our credit was gone, I found out the children were autistic and I was having issues at work. I had been taking depression medication and was doing ok until one day when things at work got really bad and I mentally blacked out. I don’t even remember everything that happened but I managed to drive myself home, came in the door and started to bake a pie. My wife had been calling me from the other room upstairs and when she didn’t hear me respond she came down and found me cutting apples with tears running down my face but I didn’t respond to anything around me. She immediately called an ambulance and had me taken to the hospital. I didn’t come to until 3 hrs later in a hospital bed and could remember none of what happened. I recovered but about a month later I had another black out session and ended up back in the hospital. From there I voluntarily admitted myself to a psychiatric hospital. I stayed there for a month of inpatient therapy before I got out and I thought I was safe to be out in the world. The doctors told me that my brain could not handle the pressures of what was going on and shut down to protect itself. There is a term for this but I can’t remember what it is. I vowed I would never be back in that place of depression and sadness ever again in my life, and so far I have kept that vow.

At this point my wife and I needed help so her parents came up from Florida to help us with the children, because although I was alive and somewhat well I was still out of work on family leave because I was not ready to work again yet. One thing I did know was that my children needed me, my wife needed me and I had to be strong. To be honest I was still not strong and my head was still not clear, and I was about to make a decision that haunted me for years. I left my job of 17 years, cashed out my retirement and moved my family to Florida to live near my wife’s parents.

Part 2 will be coming up next where I will discuss autism in Florida and what I had to do to provide for my family and the struggles that autism caused my family in the early years of my children’s life. Don’t worry I will bring you full circle to the accomplishments and successes I have achieved all these years later. I know the story sounds bleak but autism has brought me from the edge of despair to the strong successful person I am today. As bad as autism can be it also can bring out the best in people and make them stronger than they would ever though they could be.

Suicide Is No Solution

As is normal I am going to take things in a completely other direction. Well not totally but I am going to share my thought on Suicide. Let me first off say that mental illness is very serious and it needs to be dealt with like any other serious medical issue. There are many of us out there today that suffer or have suffered in the past from mental illness, and as parents of the disabled it is all to common. There are days that are worse than others, but on the really tough days it is intensely hard to cope with life itself. I have been in a bad place in my life and I thought the worst. I didn’t think it would ever get better but it did. As I have said many times before that my children have given me great perspective and have changed my life in so many ways. Even though times are often tough they have taught me that I am needed and they above all need me to help them through life. Ok enough about me, here are my thoughts.

Every time I see that a celebrity has committed suicide the negative part of me screams out, why do they get more attention than anyone else. Look it is sad and I know they have families that suffer just like anyone else but it is more than that. I immediately think that autism families like mine or yours have far less resources to pull from than this celebrity did. Ok here comes the judgement, and you can fell free to start getting mad st me. Look the facts are that most autism families, or families of the disabled live life day to day because we have a limited income and the costs of autism are so high. I mean all the extra gear, cloths, foods, doctors appointments, copays, therapies and meds are far more than the average family pays. Ok so how is that different form a celebrity, well celebrities generally have a lot of money in which to pay for theses things. The second part of this is that celebrities don’t have to work day to day to generate their income so they have more time to get help, as opposed to the rest of us who don’t have that opportunity.

Look suicide or mental health issues does not care how much time or money you have it can get to you anyway. The underlying issue is there no matter what but again the treatment is often related to resources and celebrities just have more of them. Let’s take this a bit further with our veterans who have went to battle and war to protect our freedoms who sometimes come back a shell of themselves because of PTSD. These vets have to deal with a medical system that is broken at best. They are often so affected that they can’t hold down a job and that again makes things must worse because it limits their access to help. Vets are often very proud and prideful so they don’t want others to know they are compromised making things much worse. Autism parents often go through the same issues and some of them are often now diagnosed with PTSD as well. No it isn’t from bullets and explosions but from severe emotional distress, and loss.

I think you know where I am going with this don’t you, well you should if you have been paying attention. Celebrities have both the time and the money to get help, so that fact that they don’t just boggles my mind. They can literally lock themselves up for a year to get the best help known to man if they so chose. They also have access to far better meds and treatments than you or I ever would. Knowing this why should I feel worse for them than I do for a vet, a disabled family or just an everyday person. Ok so bring on the judgement, I am a horrible person because I separate the two instances, but sorry I do. I guess maybe celebrities just think their family will be all set without them because they have the money they do. Let me tell you that if a celebrity leaves behind children, and young children even worse then the money doesn’t change much. Their children just like everyone else’s have to go through life knowing their parent took their own life. Many times they like and other child in this situation believes it is their fault and they were not reason enough to get help and not kill them self. The pain be gone for the person that has left, but the people left behind suffer horribly for years, if not forever. A loss of a loved one is bad enough but suicide just takes it to another level.

Now that I have spouted off I just want to say that there is help out there, their are people who care about you, and things can get better. You are not alone even if you think you are, and it isn’t a sign of weakness to ask for, and get help. There are medications out there that can help short term and long term and there are people other than your family that will listen and actually offer to help you. You life means something and you are someone’s hero and you have a lot to give to society, you just have to clear your head to see it. Please ask for and get the help you need and think about the people you would leave behind and how devastated they would be if you were gone.

To get help please visit the Suicide Prevention Lifeline website https://suicidepreventionlifeline.org or call 1-800-273-8255. You are important and you are special, please get the help you need.

The Long Road

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It has been a very long time since I have posted, it has been so long I was kind of afraid to post at all. I know it is crazy but I really had to think about whether I wanted to do it or not. Truth be told, I have had to deal with a lot so it has been really busy in my house, starting with some health issues that I have had to deal with. The children always have some kind of issue going on, you all know how that goes. My wife has had some health issues that have been a concern. She also lost her father so that on top of her health issues life has been hard on her and the whole family. I received a promotion at work so I am traveling between two branch offices. Finally I have been elected to the school committee in my town which is very exciting to me. I will touch on all of this, plus I have so much other material to write about that I should be able to get out a lot of posts. I guess it is just a matter of actually doing it isn’t it.

Let’s start with me and the things I have going on in regards to my health. I went to the doctor to meet my new doctor, as mine had retired. I know we all hate to switch doctors but that was not my main concern when I went into the appointment. My concern was that I had really let myself go and had gained a lot of weight, which for me is not good because I am diabetic. After my doctor saw my previous lab work and basically told me was a heart attack waiting to happen, and if I didn’t do anything I would be lucky to survive, not what I wanted to hear. After discussing things he told me I needed to both take care of my physical but my mental health as well. None of us need any mental help right? No we never have mental stress with our children right? I agreed I could use some med adjustments maybe but life stress is basically something all parents of the disabled have to just deal with, we just are never going to totally get rid of it. Other people really don’t understand the everyday stressors that we have to deal with no matter how much you try to explain it so I think we just agreed to disagree.

I did take everything the doctor said to heart because number one I knew he was right but number two, my wife wasn’t going to let me get away without doing something. I started to change what I ate and how I ate pretty much the next day and started to cut back slightly on the hours I have been working. I also tried to monitor my diabetes a lot closer than before with some new technology that allows me to wear a sensor instead of to finger sticks multiple times a day. Within three weeks I had all my lab results back on track and lost seven pounds. On top of that I changed my attitude a bit and started to not let things stress me as much. Most of that came from work and how I just took it down a few notches. I am very passionate about what I do and I take it seriously but how am I supposed to help my disabled customers, or my own children if I am so run down. It has all seemed to work as I am feeling much better, and I have kept up with the weight loss and have controlled my stressors.

Speaking of the work front, I did take on some added responsibility and took on a second branch to manage. I was brought in to help turn around an underperforming branch and help the manager to mentor him. My boss wanted me to take on the service department and then do the mentoring but I knew I was in for more than that, I was going to co-manage. Since starting this position the finances are back on track, we got rid of some underperforming staff and I have the staff both happy and respecting me as a leader, which to me makes me feel the best of all. I was so proud when I was rated on my management skills, like we do once a year and many employees said I was the best manager they have ever had. Motivation is honestly something I am really good at and being able to guide people to be the best they can be really makes me proud. I knew I had done my job when the staff hit their bonus forthe first time in two years. Now this relieves a lot of stress let me tell you, because not only is the staff happy, but I can now back off a little and let them shine and do their jobs.

We did get a little scare with my wife when she ended up needing two different surgeries and had complications with them both. The worst part of this was that right in the middle of everything she lost her dad a a relatively young age. His health wasn’t the best but we didn’t expect to loose him when we did, and all of a sudden. The worst part was that my wife, her mother and her sister had to witness his passing at the hospital in a dramatic way. Not that my wife didn’t have enough stress going on in her life with the regular everyday dealing with the children, but to add my health situation, her situation and then her dad, it just pushed it right over the edge. My wife really had a hard time with all of this, and it landed her in the hospital for a week which worried me and my son Z very greatly. He really took it better than I could have expected and held it together. I though with the loss of his grandfather which he took really rough, and then his mom in the hospital that he would have done far worse.

Speaking of Z he has had some of his own issues with hormones kicking in and him turning thirteen. I think the fact that I kept him away from the hospital and did special things with him and spoiled him a little helped him out a lot. Thankfully Z got his two therapists back in the middle of everything because I think they helped him deal with things. Z had lost his home therapist for a while, but after regressing and having some outbursts both at home and at school we were able to get her back. She is a very calming influence on him, and his social therapist has the same affect on him. He has struggled because he realizes he is different and wants to be the same as everyone else, but he knows that he isn’t. As opposed to his sister who does not have the ability to comprehend the world around her, he knows when he can’t do something and he knows when others treat him differently. Z is a very smart child when it comes to facts and knowledge, but he struggles in social situations and reading comprehension. I always say that if he could use his tablet for research he would excel but schools are just not set up that way. He does do well in Science and social studies but he struggles in math and english. This is all a work in progress and the school staff insists he well be able to graduate when the time comes and will be able to get a diploma and not a certificate. My wife and I hope this is true and we will do our best to make it happen.

Now that we are speaking of schools, I am happy to announce that I have been elected to the school committee in my town. I did run a few years back for an appointed seat but lost in the voting by one vote. At the time I let it go because it started to get busy at work and I thought I gave it a shot and it didn’t work out. I did have a few people in town throughout the past two years ask why I didn’t actually run again and suggested I run again, but the time was just not right for me. The town schools have been having some issues in the last year and although it did concern me I thought that I would let the professionals handle it so to speak. Our town elections were a few weeks ago and there were three seats up for election, one was a current member rerunning and the other two were open. With two days left before the election there were still two seats open and very little interest so I spoke to a few people and I spread the word on social media that I would run as a write in candidate. The day of the election came and I won a seat which made me really happy. Not just winning made me happy but the fact that I was able to generate so many write in votes really threw it over the edge. I just could not believe how many people believed in me and came out to vote for me. My first official duty was attending our high school graduation the other day and now I have my first meeting this week. I am hoping to give some perspective on special education and work with a great team of people all stepping up to help the school system be the best it can be.

So as you can see I have had a lot to deal with lately, but I have made some progress. What I am most happy about is the fact that my head is clear and I am able to write again. I was just clouded for months and although I had plenty to write about, I just couldn’t bring myself around to it. I did have a lot to think about, but I really think that although there are always things to write about, that I just had it in the back of my mind that I was just going to be just going over the same material. I have always said I didn’t want to just repost old articles to fill in gaps of time, even if they would be new to new readers, so at least I was true to that statement. Well more to come, I am glad to be back. I guess if new readers want to see some of my old content they can just go back in my archives, it is all still there.