Month: February 2019

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Autism and My Biggest Regret

Autism and My Biggest Regret

Every parent has regrets. Some big ones and some small ones that no one else may ever think about. As an autism mom, I have many regrets – things I wish I had handled differently – therapies I wish I had tried – not spending enough time with each of the kids. But my biggest regret still haunts me. Not every day, but often enough that it really gets to me some days. I can’t change I how I feel, even as I know I’m too hard on myself at times.

I’ve shared before that Casey was four when she was officially diagnosed. It had taken a year to get to this point, but other people knew something was up even before that. She was my first child and the only little one I had ever really been around, so I had no idea what she should be doing. She was never sick, so she got all of her check-ups at the well child clinic in our town. Maybe if I had taken her to the doctor, instead, she would have gotten help sooner. Or maybe not. Autism wasn’t well-known in the late 80’s – early 90’s.

When we finally saw the neurologist, I already knew she had autism. I had read a book by a mom with a daughter with autism and Casey did many of the same habits. But still, who can know for sure?

So, at this appointment, the doctor asked a few questions and observed Casey. When he said he was pretty sure she had autism, I just nodded. There was nothing else to say. Then he told me of a “wonderful book” about autism that I needed to read and said it would help answer all of my questions.

I bought the book right away and highlighted parts of it as I read. As I read, I was also taking care of newborn Rob and toddler Mandy, plus Casey was in preschool. And I got so depressed. This book told me she would never talk. Never be potty trained. Never be able to love. And on and on about the “nevers.” It didn’t mention sensory issues or so many other things that people on the spectrum may have.

Now, I know that there just weren’t many books about autism written at that time. It wasn’t as wide-spread as it is today. It probably was a great book at some point. I still hate it – because that book didn’t say anything about sensory issues. And I wonder, if I had had a clue what she was going through, could I have been a better mom? Maybe, my biggest regret wouldn’t be getting so frustrated with my sweet child.

I had no idea that her clothes might be causing her pain. I had no idea that sounds were causing her pain. I didn’t know that when I left the room, she thought i was gone forever. I didn’t know her screams were anything more than a tantrum because she wasn’t getting her way – even when I could find no reason for her to be mad.

I didn’t know that she desperately needed her routine so she could keep her sensory issues under control. I didn’t know she couldn’t sleep because she was too hot or too cold. I didn’t know she needed a ton of blankets to feel safe so she could sleep. I didn’t know getting her hair washed hurt her ears. I didn’t know the shower caused her pain. The list goes on and on. It doesn’t matter to me that I understand all of this now. It matters that I didn’t know then – and I couldn’t help her.

Her meltdowns started at school before at home. I’m sure it was because there were more expectations of her there and she couldn’t communicate what was wrong. I could guess at home and try to help her before the screams started. Mandy was also really good at guessing what Casey needed. (Another regret – Mandy had to be a big sister to Casey and Rob way too much.)

When her sensory issues really kicked in, the meltdowns began at home, too. But I didn’t know why she was screaming – only that she would be out of control for hours. I couldn’t comfort her. Most of the time, she had no idea I was even there as she screamed. She didn’t want my hugs. She didn’t want me to talk to her. She simply screamed. I made it worse by trying to help her.

And now my biggest regret. I got mad at her. Sometimes, I yelled. Sometimes, I slammed doors and cried. I don’t regret crying. I regret that I got mad at my sweet little child who needed my help – and I didn’t know it. I regret that I didn’t know enough to help her. I regret praying that Rob wouldn’t be like her. It’s a terrible thing for a mom to think. I should have been more patient. I should have been more understanding. I should have just sat quietly and waited for her to calm down, come over and lean on me.

I didn’t and I can’t change that. Could have. Should have. Would have. The definitions of regrets. I try not to dwell on it. I look at how much she has grown and changed. I want to find the author of that book and tell him he’s an idiot. But maybe he didn’t know any better, either.

By the way, I still have that book. It’s still the scariest book I’ve ever read. But, every time I see it, I know how far we have come and know that no one can EVER know what the future holds. It reminds me to always have faith and hope. Please, if you remember nothing else you read here today, please remember that. Never, ever give up on your child. The future is ours.

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Autism and Adulthood – It Doesn’t End at 18

Autism and Adulthood - It Doesn't End at 18

I’ve seen several comments lately about services for people with autism after they become adults. It seems that many have the idea that once a child reaches the age of adulthood, the autism goes away and services are no longer needed. It is a terrifying reality.

When children are diagnosed, schools (or early intervention programs, depending on the age of the child) are responsible for providing the child with the services they need. The speech therapy, occupational therapy – whatever the team decides they need are arranged and usually provided by the school district. Parents can work, knowing their child is safe (usually!) at school.

But then. the child turns 18. In some states, the schools still have to provide services for that child until the age of 22. I know some families have taken advantage of this in my area because their child enjoyed school. For us, finishing school was a milestone. Casey participated in her class graduation, but Rob didn’t. They both received a diploma, not a certificate of attendance. (Thanks to hardworking teachers!! 🙂 )

When Casey was a sophomore, we began to talk about what she would do after graduation. Our county board of DD had a sheltered workshop and I knew many of the people who worked there. She visited a few times and seemed to like it. In her junior year, she went to the workshop on Fridays and the high school the rest of the week for the first semester and went two days a week the second semester.

Her senior year, she started at both places. The first semester, she went to school Monday, Wednesday and Friday and the workshop Tuesday and Thursday. The second semester, we switched and she was at the workshop more. When she graduated, she began attending the workshop full time.

Rob didn’t need as much transitioning because he was already familiar with Hopewell from Casey being there. He started in the second semester of his junior year and we followed the same schedule as Casey his senior year. When he graduated, he went with Casey full time to the workshop.

They both enjoyed the opportunities there and even made a little money doing piecework. Neither of them understood the idea of working for a paycheck and despite my best efforts, the check they got never meant money to them. Money (besides 3 quarters every morning!) still means little to them. They both know they need it to buy what they want, but have no idea how to get it (besides Mom’s purse! 🙂 )

We are lucky. There are several day habs in my area that provide day services to adults with special needs. I haven’t checked into the other ones, as the kids are happy where they are. Some offer small jobs where the adults can earn money. We also have a county board that does their best to make sure adults with special needs are taken care of and their wants and needs fulfilled.

Again, I am lucky. Casey and Rob have no desire for a job. So many adults with autism want a job – to have a group of friends – to make their own money – to live on their own. Casey and Rob do not have these desires. To be happy, they want to see people they love. Go for hikes with Tracie. Go shopping. Volunteer. Things that are easy for me (right now, anyway!) to provide.

But for many adults with autism, obtaining what they need is a bigger fight than getting services in school. Social security benefits can be difficult to get. Guardianship cases have to be decided. Finding a place to live if living with family is no longer possible. Finding someone to stay with the adult while families work or need respite is hard. (My parents and Tracie are my kids’ respite providers – I worry what will happen when my parents are no longer able to help. Finding people you can trust to be in your home with your child is scary as hell.) Trying to get waiver services. This list goes on and on and often, there is no one to help the family get through the process. (We have a service and support person through our county board of DD).

Sometimes, the problem isn’t money, but that there are simply no services available. There is a desperate need for providers, both in residential centers and home based. It takes a special type of person to work with people with disabilities. Many think they can and find out quickly that they can’t handle it. I often think I should get my certificate to provide services, but I’m not sure I can handle it. When I worked in the preschool for children with autism, there were many days that I came home exhausted and had to deal with autism at home, too. I loved my job and hated when it ended, but there were some tough days. I’m just not sure I want to do that again.

Some families are just looking for a place for their loved one while the family is at work. They don’t care about money – they just need a safe place. Not working is rarely an option for most families, especially if the adult with autism is not getting any disability benefits. Fighting for school services is nothing like arguing with Social Security that your child is an adult and that the autism did not go away. You have to prove it. You have to find doctor reports from when your child was much younger. If you are just starting on this autism journey, please, do yourself a favor and start a file. Save everything – you will need it someday!

My advice is to get help from your county board of developmental disabilities. If you don’t have one, contact your state board. Start making plans while your child is still in high school and you have that team to help you search for services. Find a lawyer to help with guardianship. Get on waiting lists for services, even if you aren’t sure you will need them. I know the last thing you want to do is have something else to deal with. You are tired. You are stressed. You are just done with autism.

But, if you don’t start planning early, your child will graduate and suddenly, you have nothing ready. You still have to work and you have no one to stay with your adult child. Trust me – a little stress now is better than a huge stress later. Get help before you need it. Look for places for your child to go. Ask other parents what they do or where they got help. (Often, other local families are your best source of information – a sort of “been there, done that” group!)

Although the future scares me a lot, I try not to dwell on it. Instead, I try to be more like Casey and Rob. Happy with simple things. Laughing for no reason. Being honest. Getting excited about Santa and the Easter Bunny. Pure joy at seeing their favorite people. Enjoying helping other people. Adults with autism can bring a special magic to the life of anyone they are around.

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An Autism Mom’s Happy Thoughts

An Autism Mom's Happy Thoughts

This was a camp respite weekend and the kids had a wonderful time. They got to see their friends, watch a movie, go bowling and make Valentine treat bags. When I dropped them off, I saw a friend of mine who is another autism mom and we talked a few minutes about our plans for the weekend.

Happy thought #1 – At the time, neither of us had definite plans for when our kids were gone. We had a good laugh when we discovered we were both hoping to have a snack without either a) waiting till the kids were asleep or b) hiding in the bathroom (yeah – maybe not a perfect solution, but you gotta go what you gotta do at times! 🙂 ) Anyone with a toddler will know what we mean, but our kids are adults and are still watching us eat. Have you ever noticed food isn’t as good when you are rushing through it? or when someone is trying to convince you to give it to them while you are eating??

And we were both hoping to sleep in – or maybe go to bed when we were tired instead of having to wait until the kids are asleep. It always makes me feel so much better when another autism mom shares my “strange” ideas of fun. I don’t feel alone when I hear my thoughts coming from another mom. Alone is a big part of autism and any time you can feel not-so-alone is great!

Happy thought #2 – I am so thankful that changes in her routine don’t throw Casey into terrible meltdowns anymore! When she was little, a snow day from school was enough to cause her to scream for hours – usually until her regular time to get home. Now, she is excited for “dult snow day” and goes back to sleep. ( I have to admit, though, the week before last, the weather caused my school and their day hab to be closed for three days and then the weekend came. Five days out of routine about did both of them in – and me, too! 🙂 )

Happy thought #3 – The kids were at my parents’ house Friday until I got off of work. When I walked into the house, Rob was looking out the window and said “I see power poles.” The whole sentence with no coaching and spontaneously. I was so excited and told him I was proud of him. His response was to look at me like I was crazy and go on looking out the window at the power poles. But still – a whole sentence that wasn’t an “I want” kind. Yes, I was happy!

Happy thought #4 – When we packed his clothes Friday, I wanted him to take a new shirt for going bowling and he resisted, but I packed it anyway and told him to wear it bowling – all the while thinking, yeah, sure he would. I saw pictures from the bowling alley and believe it or not, he is wearing the shirt! I am still in shock over that, but so very proud of him!

Happy thought #5 – Watching Casey talk to Julia (the Sesame Street character with autism) about going to camp was so cute. Since Julia came to live with us at Christmas, she hadn’t gotten to go to camp, yet. Casey’s smile as she told her bits and pieces of camp was beautiful. (On a side note – does anyone else talk to their child’s stuffed toys like another person? I always find myself telling Elmo or Cookie Monster good night and sweet dreams – or that it’s time to get up. And some days, I don’t even notice I’m doing it! 🙂 )

Happy thought #6 – My favorite show is coming back on tonight after a mid-season break. I hope the kids realize there can’t be any noise after 9! HA! (I can always hope, right??)

Happy thought #7 – I love snow and it’s snowing again! 🙂 🙂

Happy thought #8 – Autism isn’t defining us tonight. We are all enjoying our own activities, but still together. It’s evenings like this that give me hope for the future – and make it easier not to be afraid of what tomorrow might bring.

I hope each of you has a week full of happy thoughts! Look for those little moments that happen every day!


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Autism and Trust between Parents and Teachers

Autism and Trust between Parents and Teachers

In the last week, I have read two stories about teachers who callously abused the children with autism they are trusted to care for each day. In one case, the principal felt “threatened” when an 11 year old boy with autism needed to use the restroom and he rushed past her. She locked him out of the school.

Yes, you read that right. She locked an 11 year old boy with autism out of the building – and then instructed all staff to not let him in. There is video showing this boy wandering around the school – even at one point, another teacher pulling down the blind so he couldn’t see in (or she couldn’t see what was happening in front of her face! 🙁 ) Eventually, another student – yes, a child – let him into the school. I will confess I don’t know the whole story, but I DO know that it was NOT safe for that child to be outside on his own.

What if he wandered away from school? What if someone took him? What the hell was that woman thinking? And the rest of the staff at the school who listened to her? My blood boils just thinking about it. And I thank God that wasn’t my child. I would be in jail right now.

In the other case, a teacher and two aides locked children in a dark bathroom for undetermined amounts of time (I’ve heard varying lengths) and also blew a whistle in the ear of a child whose ears are so sensitive that ear guards were worn. They pulled the guards off and blew the whistle into his ear. The teacher is the wife of a county sheriff’s deputy. Again – I just want to scream “What the hell is wrong with you?”

Do they get off on being cruel? Do they have no clue what they are doing? Are they that frustrated with the children? (This is a school for children with autism). They have since been charged with several things. (I haven’t heard anything about the staff from the other school, other than the principal was put on administrative leave, pending investigation). Personally, my Mama Bear came out. I’m hoping they all go to jail and the other prisoners are told they abused children with autism. I just don’t care about them. (Can you tell how angry this makes me??)

One of the scariest things of sending your child with autism to school is not knowing what happens while they are there. You rely on the teacher/aide being honest with you and protecting your child. When your child acts out, you trust that they will be professional and kind, even when they are frustrated. You don’t expect that they will lock your child outside of the building. Or in a closet.

That happened to Casey.

She had a hard time in Kindergarten at the end of the year. In first grade, things got worse for her. She was having screaming meltdowns. (This was in the early 90’s – few people had a clue what to do.) The school thought I was lying to them because I said it wasn’t happening at home (and it wasn’t, yet). I think school was demanding of her – and it was full of lights, sounds, and strangers that she couldn’t process. Home was her safe place. Eventually, her sensory issues carried over into home, too.

One thing we had read to try was for students to have a “safe” place to go when they started feeling overwhelmed. Her teacher cleaned out a supply closet and put bean bags, blankets and stuffed animals in it. All the parents had to sign a paper saying it was okay for their child to use the quiet room. I was fine with it and signed.

Imagine my shock when I discovered a few months later that a half door (too high for her to see out) had been installed with bolts on the outside of the door. My sweet little girl was being locked in this area when she screamed. And I hated that teacher. And the aide. And the principal and everyone else who lied to me about what was going on. There are only a few days in my life that I can honestly say I have been mad enough to kill. That was one of them.

The school justified it because I had signed the paper saying she could “use the quiet room as needed.”

I wanted heads to roll. I wanted to beat the living crap out of every one of those people.

I still want to smack them. It’s been 25 years. Some things you don’t get over.

Believe it or not, that was just the beginning of what I found out they had done to her. They tied her shoelaces to her desk chair. They isolated her at lunch time (though, honestly, she liked that – the cafeteria was too noisy and she just couldn’t handle it.) They wrote letters to her doctors accusing us of abuse (I found out about those when I took her to the doctor for strep – the teacher didn’t even have to guts to talk to me – and they never reported suspected abuse to anyone, despite being required to do so.)

When that came out, we met with the principal who had signed the letters. She actually looked at me, said she probably shouldn’t have done it and asked if I wanted to hit her. She has no idea how close I came to do just that. She handled it badly – she knew she was in trouble. I’m sure the teacher forced her. Do I forgive her? Nope.

The good thing that came from all of this is that the special education coordinator and I finally managed to build a friendship. (We tended to butt heads, but he came through on this. He was beyond angry and stood with me). When he passed away last year, I felt like I had lost a friend. We were finally able to be on the same team for Casey and soon, for Rob. He even made sure that the teacher who did this was moved before Rob was to go to that school. There was never a question of that woman getting near another of my kids and Casey was moved to another room early. (Usually, kids were in a class from K – 3rd grade – she moved after 2nd grade)

I didn’t blame the school as I’m sure few had any clue what was happening. There were (and still are!) amazing, caring, wonderful teachers there and throughout the whole school district. We are blessed that we only had that one to deal with (we had issues with another when Casey was in high school, but she didn’t stick around long) We were advised to hire a lawyer and sue the district. It took a lot of praying and thinking before we decided against it. The teacher was not near my kids (unfortunately, she did continue to teach. I shudder to think what else she may have done – I warned everyone to keep their kids away from her) and I still had three kids in the district. I knew Casey and Rob were going to have a hard enough time without being known as the kids of sue-happy parents.

Once something like this happens, finding that trust again is so hard. Again, God was watching over us and I didn’t have to see the two people I held the most responsible for the situation. When it came time for IEPs, I flatly told the principal she was not welcome at their meetings.

Luckily, the teachers God sent us for Rob and Casey the following year were among the best in the district – I still believe that! I knew Casey’s teacher was overwhelmed at times but she called me and we brainstormed together. We thought as far outside the box as people can think. She talked to her doctor. They all went to conferences with me to learn new ideas. The love both teachers and all the aides felt for all the students was obvious. I hope they know that I still thank God for them. I couldn’t have made it without them. (And Casey and Rob still talk about all of their teachers with smiles and happy eyes. Casey never mentions that one teacher).

I debated whether to even write this. What I want to do is help explain over-protective parents to teachers. Yes, we may have a lot of questions – we may text or call you too often. Please understand that, in most cases, it is from an underlying fear that someone could hurt our babies. We have to be protective in the only way we can.

The fear and anger of what happened to Casey still sticks with me. I overact, at times, when I don’t think people are treating her right. I do apologize for that, but until you see how cruel people you trust can be, you don’t understand how that pain lingers. I wish Casey and Rob could just tell me when something happens. I hate finding out in bits and pieces over weeks.

Parents, most teachers are wonderful, loving people who only want the best for your child. You have to trust them – help them get to know your child. Be open to meetings and be honest about your child. Teachers, understand that for several hours a day, you are holding our most precious gifts – and we are scared. Be available to listen. Be open to suggestions. Love and protect our children. We understand frustration – just tell us and let’s work through it together.

Only by being a team can our kids get everything they need.