Tag: autism parents

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Autism Awareness Month – Do What’s Best for Your Family

Autism Awareness Month

I’m sure most of you know that April is Autism Awareness Month and that April 2nd is World Autism Day. Most posts ask you to wear blue to show your support and puzzle piece items are abundant this time of year. I’ve been doing a lot of thinking about April the last few days, thanks to a follower on our Facebook page. He had several really good points. I’ve also read other posts from families who dislike the puzzle piece and wearing blue. Other families “Color their world.” Still others do nothing. My point is – do what is best for your family.

I understand people don’t like the puzzle piece as they feel it is saying their child is “missing” something. A well-known autism organization likes to say “Till all the pieces fit” as if lives were a puzzle that may not be completed, until autism is cured. I’ve written before I am not a parent who wants to see my children “cured.” There is nothing wrong with them – autism is part of them, like my temper is part of me. To say they need cured is like saying they have a terrible disease and not just a different way of thinking and feeling.

I like reading what other people think as it gives me a different perspective. I also know that many unscrupulous people use “Awareness Months” to scam people from money. Please, please – if you feel the need to donate, give directly to the organization – do not donate over the phone when someone calls you. Or give your donation to a local organization that helps families with autism.

I never felt the puzzle piece was a negative symbol for autism. (Please – this is only my opinion and I’m not trying to convince anyone to think like me!) I like the bright colors. I wear puzzle piece charms. I also wear puppy paws. My charms are only for things I love – not a political statement. But I have another reason to wear the puzzle piece….

Casey likes it. Simple as that. She doesn’t think there is anything wrong with her – she just likes the puzzle pieces. She doesn’t understand why people argue about it. She likes that “she” has a ribbon and that she can give them to her friends in April. To her, April is a celebration and you know how she loves celebrations! She won’t tell you she has autism. She won’t tell you much about herself. Casey and Rob both know they are different than others – they just don’t care.

They are happy. They have a huge family that loves them. They have Mandy and Cory. They have Elmo and magazines. They have crayons and color by numbers. They get to go hiking with Tracie and to sleep at Grandma and Grandpa’s. April isn’t a month to point out their differences to them. If anything, it is a month to celebrate those differences.

Casey is very proud of her puzzle piece flag on the front porch and they both like putting blue flags in the yard. We don’t do it for acknowledgment – we do it because they like it! We will wear blue on April 2nd because Casey loves it when we do. We are not doing it as if to say “hey look at us – this month is about us.” We do it because it makes our family happy. In our house, every month is Autism Awareness.

We spread awareness all the time. Every time we go to a store or visit a new place, we are spreading awareness of autism. We don’t need a special month to spread awareness, as my Facebook friend pointed out – most people have some awareness of autism now. We need to spread the joy we feel as parents of these amazing people! We need to show our pride. We need to support each other, as we all know we have bad days. Judging other families for how they live with autism is hurting everyone who lives and loves autism. Be kind. It’s really that simple.

So for this “Awareness Month” I’ll be sharing bits and pieces of our journey on our Facebook page and we will be proudly wearing blue and displaying our flags. Because every time someone laughs at something one of the kids did or thinks outside the box because we did, more lives will be affected. Maybe a teacher will try to be more like the ones my kids had or a parent will feel less alone. (Autism can definitely be a lonely journey at times. 🙁 )

Happy April, everyone! Spread pride and joy! Think of this as a month to celebrate your amazing family! Casey thinks we need a cake and Rob wants cookies. I think we can do that. Maybe I’ll even make them puzzle piece shaped or blue…. 🙂

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Autism and a Birthday Week

Autism and a Birthday Week

Casey loves birthdays. She loves to know everyone’s birthdays and can still tell me the birthdays of children in her preschool class! (thanks to her autism!) She hears someone’s birthday once and she doesn’t forget. It took me years (and sometimes, she still asks!) to get her to understand that we are not celebrating every birthday she knows, nor are we going to find those people and intrude on their celebrations.

As much as she loves other people’s birthday, nothing compares to the excitement she feels when it is HER day! She reminds me as soon as Mandy’s birthday is over in February that she is next. She doesn’t countdown – she just says “Casey will be 31 March 22.” Over and over… and she will make a list of what she wants. And where she wants to eat it. Everything must happen. This year, though, we saw that as excited as she is, she is willing for changes to happen.

My dad’s birthday is the day after hers and we have always had two celebrations. We wanted her to have her special day and even when we talked about combining them in other years, Casey wasn’t happy about it. Grandpa’s birthday was not the same day as hers and shouldn’t be celebrated on her day. (We always have her birthday party on her day – she can’t grasp doing it another day.) This year, she was okay with celebrating both together! It was a huge step for her!

She was a little concerned about how many candles we would need, as she said she needed 31 and Grandpa needed 74 (at which point Rob spoke up and said “105” and completely shocked me. He never talks about math and didn’t like it in school… this is just more proof they know more than they tell us and we should never doubt their abilities!). I told her we were absolutely not going to light 105 candles (though, now…. I kind of wish we did! 🙂 ) and she laughed. She has been okay with fewer candles on her cake for a few years – as long as she gets to blow them out and have everyone (including herself!) sing to her.

Another change this year was she decided she wanted “banilla pie with bananas” instead of cake! I was amazed she wanted pie instead of the traditional cake which usually has a Sesame Street character on it. I bought the ingredients for her pie (banana creme! lol) but was sure I would be making another trip to the store for cake stuff. She never changed her mind. She did keep reminding me that she wanted a new Ernie, summer PJ’s and money to go shopping. 🙂

She was up before dawn on her birthday. When I went to get her up, she bounced to me for a hug (WOW!) as I sang Happy Birthday to her. She had the sweetest smile on her face and couldn’t wait to start her day. They had her favorite doughnuts for breakfast and off to Hopewell.

As soon as they got home, she said she wanted McDonald’s for supper. I reminded her we could go anywhere (can you guess who didn’t really want that?? 😉 ) but she insisted. Mandy and Cory came for supper and then it was a waiting game until Grandma and Grandpa, Uncle Jeff, Aunt Angela, Lacey and Anna arrived. She was so happy to open presents – to find Sesame Street coloring books and books, summer PJ’s and money. Then…. Ernie!! She lit up when she saw how big he is and named him “Da Biggest Ernie” But, even better – Mandy and Cory bought her Elmo Fatheads (giant wall stickers) She wasn’t sure what they were at first, but was thrilled it was Elmo. Now he is all over her walls and she giggles when she thinks about that.

The funny thing is, once she had her pie (and a piece of Grandpa’s cake) she disappeared into her room. To her, her birthday was done. She didn’t care that her guests were still there, nor did she wait for good-byes from them. She had been running on excitement all day and she needed down time. She was happily folding socks as everyone left. Life is simply good.

I am still surprised that she was okay with sharing her party with Grandpa. (She did insist on seeing him on his birthday, which was no big deal. 🙂 ) I am surprised that Rob did that math. I am surprised that she asked for money to go shopping. I am completely in shock that she read every birthday wish she got on my personal Facebook page and our autism one. She carefully took my phone and slowly scrolled through them all. She loved seeing the GIF’s and the little pictures that people added to their comments. That was the first time she has ever shown any interest.

Autism constantly surprises me. Not always in as good of ways as this week, to be sure, but life is certainly never boring. Never, ever give up that your child will learn something new – that he/she will grow and change. You can’t possibly know the future. Keep your faith and enjoy every little surprise that comes your way.

By the way – Casey told me this morning that Grandpa’s birthday is all done… and it’s only 364 days (next year is Leap Year) until her birthday again and she will be 32. 🙂 🙂

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Autism – The Good, The Bad, The Ugly

Autism - The Good, The Bad, The Ugly

I got a message from someone who follows our Facebook page that informed me she was “unliking” the page because I was unrealistic with my views on autism. Against my better judgment, I asked what was unrealistic about my posts (because I really try to keep it real! 🙂 ) and she replied that autism isn’t the “rainbows and unicorns” that I believe it is and that a “real” mom would be praying for her children to be cured, not bragging about how far they have come.

Hmmm…… what?

I took a deep breath, counted to ten and tried to reply with kindness.

She again called me a bad mom for being proud of the kids and not just praying for a cure. She said I only shared fairy dust (she did like her pretty picture words, I’ll give her that. 🙂 ) and that her life was nothing like what I wrote about.

Yeah – and neither are my friends’ lives, lady. I tried again to be kind, as I truly believed she needed help and that God would want me to be kind.

She said that I make autism look easy and it’s not (yes – I write about good days – but I share the bad, too…. at least I thought I did). Then she made a comment about how I am ruining Mandy and Cory’s lives because Casey and Rob want to spend “too much” time with them. Unfortunately, she crossed a line. Mama Bear came out. Sorry, God – I really am – but I told her off and said she didn’t need to unlike our page as I was blocking her sorry self.

And that’s the ugly of autism. I still don’t get why she felt the need to tear us down. I mean, I know that when your life is hard, it’s hard to see others being happy, but really? Whatever, girl – move along. We don’t need your crap here. The ugly of autism is people who don’t try to see how amazing people with special needs are. It’s the judgments of people in public and who never learned it’s rude to stare and worse to make nasty comments.

When I started this blog and our Facebook page, it was simply a way for me to share our lives. I hoped that maybe, we could make someone laugh who hadn’t felt like laughing in a while or that we could help someone not feel so alone when they read that we are going through similar things. I didn’t count on the rude people (yeah – I should have… at least I can block them and Casey and Rob don’t have to hear their crap! 🙂 ).

I hoped that maybe something I tried with the kids would help another parent think of new ideas. To let people know that thinking outside the box was an awesome way to think. I wanted to connect with other autism parents so I wouldn’t feel alone at times. I wanted to let people know it’s okay to want to beg your son to go to sleep because you are so tired you just want to sit and cry.

I wanted to let people know it’s okay to be irritated when your daughter insists on tapping her socks (6 times each), her shoes (4 times, then 1 time – each!) then floor by the closet (3 times!) the hood of her coat (7, I think) the zipper of her coat (5 times, then 2 times – but only before she zips it, then it has to be tapped 2 more times – but only the first time she wears her coat that day – the tapping changes for each time she wears the coat during the day) when you are in a hurry to get out the door.

I wanted to let others know it’s okay to laugh when she jumps so her feet aren’t touching the kitchen floor when she turns the light on. And it’s okay to laugh when he fairy dances through the house. It’s okay to be tired of the same routines, of the same things over and over. It’s okay to want excitement in your life that isn’t autism related.

I try to share our good times as well as our rough days. Yes, my life is different from each one of you and what works for us may not work for you. I try not to make autism seem terrible. Some days it sucks, but not every day. Just like every other part of life.

And since my now blocked friend pointedly didn’t like me bragging about the kids… they did AWESOME at track and field last week! They were in a running race together – Casey took off and flew down the track. Rob jogged, he smiled at us as he ran by, he looked at the ceiling, he watched Casey running back to him…. and he fairy danced to the finish line. She got a blue ribbon, he got a red. She was excited – he didn’t seem to care.

They both enjoyed the basketball shoot and each got another ribbon. The noise was beginning to get to him, but he was still enjoying himself. The next slot was several activities they could choose from – and of course, he followed her wherever she went. She got a smiley face painted on her cheek – he got one on his hand (after our fiasco with the gray paint when he was the Tin Man a few years ago and the paint wouldn’t come out of his beard, he avoids paint on his face!) He was her shadow.

Yes, I am proud of them. That’s the part of the good of autism. I’m allowed to be proud of them. Everyone has abilities and talents, my blocked friend, and I can tell the world about my kids’. I do pity that you are so wrapped up in the bad, you won’t allow yourself to see the rainbows and unicorns! Maybe someday…..

If you are looking for a place to feel sorry for yourself, this isn’t the page for you. If you want to be angry all the time about your life, this isn’t for you. If you think autism is always easy, this isn’t the place for you.

If you want to find hope, laughs and new friends who understand you are happy, sad, mad, tired, exhausted, silly, and proud of your kids, welcome! We are so happy you are here!

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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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Autism and Anxiety about the Future

Autism and Anxiety about the Future

A few days after Christmas, a doctor found a lump on my thyroid. He said many people had them and that it probably wasn’t anything to worry about, but that he thought I needed an ultrasound to see just what was going on. Anxious to get out of the office and on to shopping with Mandy, I agreed.

I did a little research when I got home, but I wasn’t worried about it. When I went for the ultrasound, I was surprised to hear there were two lumps and that one was solid, one was fluid. I was a little more concerned, but still, not enough to stress over. When the doctor called me the next day, I was shocked to learn that both the radiologist and the doctor were concerned and that I needed to have a biopsy.

Another doctor appointment was set for the following week and I’ll admit, thoughts of the future popped into my head more often. Even though the doctor has assured me that thyroid cancer is easily curable, the thought of cancer wouldn’t leave my mind. Still, though I was more concerned, it wasn’t all consuming. Just a nagging thought that came to me at odd times. I’m not one to stay awake at night worrying about things – I fall asleep as soon as my head hits the pillow. (I think it’s from all of those years of getting sleep whenever the kids slept! 🙂 )

I worry when I wake up – those first few minutes before I’m in the shower. Those minutes when it’s only Blue and I awake in the house, when wild thoughts went through my head. When worse case scenarios are so easily brought to the surface.

At the next doctor appointment, he agreed that a biopsy needed done. He wanted to do a quick ultrasound, then use a camera to look closer at my throat. However, as soon as he did the ultrasound, he said he had seen enough – no camera and I needed a biopsy as soon as possible. It was scheduled and the weekend before the procedure was not a good one for me (last weekend – our house was insane!). Thankfully, the day after the biopsy, the doctor called and the lumps were benign! The relief I felt was amazing – I felt like I had been holding my breath for days and I couldn’t call and text everyone fast enough. I just kept thanking God over and over.

During those weeks of waiting and wondering, thoughts of the future kept coming to me. Thoughts of surgery, of missing work, of possibly having to deal with cancer. And through it all, I tried desperately to hide my anxiety from everyone, especially Casey and Rob. Even though I knew that I couldn’t hide it completely, I tried to keep it from them. Casey has a real fear of needles, while Rob gets anxious enough without thoughts that I might be sick.

It seems silly, now that I know I’m fine, but those thoughts were scary. And it brought to surface the thoughts that all parents of special needs children have – what happens when I’m gone? It’s a terrifying, gut-wrenching thought. Who will care for your child? Who will advocate for your child? Who will protect your child? Who will love your child? Make sure that Elmo and friends are close and that crayons and cardboard are available?

Who will understand that he can only wear wind pants and soft, sleeveless shirts? Who will remember that they have a little snack after their afternoon pills? Who will remember she only takes baths and he only takes showers? Who will buy his special pretzels and write on her calendar? Who will care that she wants to wear her Michigan State t-shirt on Saturday and won’t get dressed without it?

And the routines… who will be able to remember all of the little things to make their lives easier and happier? That she needs to pat her clothes before she puts them on and he needs quarters in his pocket every morning, even if he never spends them. Even as I sit here, I can’t think of all of the little things that I just do every day – those things are just a part of life with autism – and they aren’t like anything else another family with autism lives with. Every one of us has our own routines.

Mandy and Cory have told me many times I never have to worry about the future, as Casey and Rob will always have a home with them. And that is a relief – a huge one, but at the same time, I still have worries. Casey talks about people who have passed away and that they are in Heaven. She believes it is a place and, if it is a place, why can’t we just go see them? She doesn’t truly understand the concept of dying. Rob talks about people who have passed away, but again, I’m not sure he understands they are gone and can’t come back.

It tears me apart that Casey and Rob might believe I just left them – that they might think I just got tired or didn’t love them anymore. Most of the time, I know thinking like this does no one any good and I push them away. We can’t ruin today worrying about the future. But it’s something we’ve all thought about. It’s scary enough to think about leaving our kids, but when they need us to protect them, it’s even more terrifying.

I am lucky. Casey and Rob have Mandy and Cory and others who will love and support them. Casey will believe I went to Heaven and that she will see me again someday. Rob is a mama’s boy and may have a harder time with me being gone and that breaks my heart. I know there is little I can do about something I have no control over. Today has it’s own problems and usually, I have no energy to think about the future. The last few weeks just brought those dark thoughts to the surface and I wanted to share my thoughts on something that most can only talk about to other autism/special needs parents.

Make the preparations you can for your children. Prepare a will, maybe a trust. Teach them as many life skills as you can. Help them be comfortable with a large circle of support. Share the little details that make your children special. Tell people about their “quirks” and their routines. Then more you feel prepared for something you can’t control the less the future will scare you. Trust that God will always look after your amazing children.

And, as I said earlier, don’t ruin today with thoughts of a future you can’t possibly know. Live, laugh and love! 🙂 Enjoy every day and let the future take care of itself. Trust me, I’m not blowing off your concerns – I’m only saying that you can’t let it consume your life.

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Autism and a Different Looking Christmas

Autism and a Different Looking Christmas

As autism parents, we want to give our kids the same magical Christmas that typical families have. It’s a struggle, at times, but who decided what type of Christmas is the best?  Just because we do things differently than anyone else doesn’t make our holiday traditions any less special.

I just read an article about one family who gives their son with autism a gift every day for a week or so.  He can’t handle the excitement and the over-stimulation of Christmas morning, so they spread out his gifts over time.  He can enjoy each gift and not be overwhelmed.  They don’t have a big Christmas tree, as it’s not safe for him, but they have a tree in their daughter’s room, so she can enjoy it the whole season.

Unfortunately, I also read some of the comments from people about their arrangement.  I can’t understand why people are so negative!  We need to support each other and our choices, not tell them how to enjoy their holiday!  If that family is happy and it works for them, that’s awesome.  I’m betting that the people who made negative comments have a few odd things about their holidays, too!  🙂

We don’t have to go to that extreme here, but we also don’t go to a lot of parties or events.  I try to find things the kids would enjoy doing that doesn’t involve crowds (or we go at odd times to miss the people!).  Last night, we went to a drive-thru festival of lights about an hour from home.  Casey knew we were going and was up early that morning to get ready, even though she knew it had to be dark before we would see lights.  She seemed to enjoy it, but I’m not sure Rob liked it as much.  He was looking at lights, but he didn’t seem to care much about them.

The nice thing about the drive-thru light shows is we don’t have to worry about other people.  We can go early, before the lines of traffic get too bad and be nice and warm in our car as we look at the beautiful displays.  I can turn music on that they like and they can have snacks, if they want.  The zoo has an awesome light display and we’re thinking about traveling there soon.  Both of the them love the zoo, but with Rob fighting yet another ear infection/virus, I’m not sure walking around in the cold is such a good idea.

Casey wants to see Santa.  And go shopping for gifts for others.  And make cookies.  And go to the zoo.  And go to another light show.  And go to the Christmas dance.  And wrap presents.  And… and…. and….   Rob wants to go to the dance.  Period.  🙂   He does enjoy picking out gifts for others, but he doesn’t get excited about it like Casey does.  He’ll go when I say “Let’s go shopping.”  He’ll wrap presents whenever we get to it.  He’s pretty laid back about the whole thing.

Christmas Eve, we’ll open presents from each other.  I started doing this when the kids were younger to help entertain them that day while I was finishing getting ready for Christmas.  Then, I wanted them to understand who gave them what gifts. (My kids have to write thank you notes for their presents – old fashioned idea, maybe, but it’s important to show appreciation!)  When we did everything on Christmas morning, they couldn’t really appreciate their gifts.  So now, Christmas morning is just for Santa.

Casey is already talking about getting “up in da dark” that morning.  Last year, Rob got up during the night and ate snacks from his stocking while I slept.  He never touched the presents, but couldn’t resist the little can of Pringles in the stocking.  Casey rips everything open, yanks tags off of clothes and leaves it all piled on the couch.  Then she goes back to bed until she has to get ready to go to her grandma’s house for lunch.  Rob is slower at opening gifts and usually goes back to bed, too.

Often, when they get back from lunch, they take another nap before supper at my parent’s house.  Casey has such a schedule in her mind that I’m not sure she truly enjoys the day. (Autism and schedules can just stink at times!)  She is very serious about each thing we do and you can almost see her checking items off her list until late that evening, when her list is complete, and she can relax.

We don’t rush from place to place for days.  A long time ago, I learned it was so much more fun to take a nap on Christmas Day than rush around.  We have a very relaxed holiday here.  People are welcome to stop by and see us if they would like.  I’ll have snacks and cookies for guests.  But, really, it’s a quiet day.  They have plenty of time to relax between grandmas’ houses and are usually ready for bed right on time that evening.  (Of course, we have to stick with our usual evening routine, even on Christmas!)

The hardest part of my holiday is shopping for Rob.  Casey will give me a list a mile long – including colors and sizes – but this year was the first time Rob told me something he wanted for Christmas!  I was in tears when he said he wanted “Signs” for Christmas!  (And yes, he is getting several!)  He has never been able to answer “what do you want for Christmas?” before.  A huge step forward!!   I also buy him things most people wouldn’t really consider gifts – a huge box of crayons he won’t use, several packs of clay to cut up, packs of paper to rip up.  (Lots of sensory things to help with his autism anxiety!)  These things make him happy, so that’s what he gets.

There are so many things I would love to do around the holidays!  I have a list of places that we can visit that I think the kids might enjoy, but I have to stop and consider their needs, especially Rob’s.  He needs time to be at home, in his room, ripping magazines and just chilling out.  Casey needs that time, too, but she’s more likely to run and run and run and then have a meltdown.  Balancing their needs is difficult – especially at this time of the year.  Today, she wants to go shopping before they go to grandma and grandpa’s house, but he is having major anxiety issues, so that’s not something I’m willing to attempt.  She isn’t pleased with me, but she’ll get over it.  I hope without a meltdown.

Our Christmas won’t look like yours, but it’ll be special – just for us.  Just like every other family in the world, we do what’s best for us.  It may look odd to you, but running yourself ragged trying to do everything looks odd to us.   🙂   I hope each of you finds the perfect balance for your own special family!

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Autism and the Excitement of Christmas

Autism and the Excitement of Christmas

This time of year can be especially difficult for families with autism.  So many people with autism rely on schedules to function each day and the holiday season with all of the extra activities can throw anyone into a meltdown.  (Even a few “normal” people!  🙂 )   Casey used to have a really hard time each December, but now, she’s just excited about everything.  Rob takes it all in stride – he’s pretty mellow about things, but his anxiety can be higher when he doesn’t get enough downtime.

We started our season a few weeks ago by going to our town’s Christmas parade.  It had been several years since we went to one as the kids are usually at camp that night.  Casey was beyond excited – she was going to see Santa on a fire truck and couldn’t stop giggling about that.  Rob was happy to go because Casey was happy and Mandy and Cory were coming!

He even put a hat and gloves on (mostly because Casey did!) and sat quietly under a blanket while we waited.  He did let out one yell, but when Cory reminded him he was hurting ears, he settled down again.  He was happy to sit and watch all of the lights – until one of the trucks pulling a float blew an air horn!  He jumped a foot and covered his ears as tightly as he could.  It has been years since I’ve seen him affected so strongly by a noise (I’m wondering if the ear problems he has had this year could have contributed to him being more sensitive to sounds) and I felt terrible.

Rob tensed up every time a truck came near us.  Mandy and I took turns covering his ears for him so he could relax.  Unfortunately, the excitement of seeing Santa was dimmed for him by the realization that there was an entire line of fire trucks coming towards him.  He loves fire trucks, but was so scared about the air horns blowing unexpectedly that he couldn’t really enjoy it.

Casey, however, was almost bouncing in her chair!  Santa was coming!  And he waved to her!  She couldn’t take her eyes off of him and the smile on her face was priceless.  She watched until she couldn’t see him anymore and asked if she could go talk to him soon.  (That’s on our list of fun things to do!)  I told her we would go to the mall and see him.

The day after Thanksgiving, we start decorating for the season.  Boxes were everywhere and Casey couldn’t wait to get her tree up.  I told her she needed to put her laundry away first and she did it in record time.  Their trees were up and stockings hung in their rooms.  They both love going to sleep with the tree lights (pretty and calming!).

We have a list of places we want to visit during the month.  Drive-thru light shows are always a great way to spend an evening (Never have to worry about the weather, crowds or anxiety!) and I’ve found a few new ones that we’re hoping to make it to this year.   Several of the zoos in the state do extensive light decorations, too, so that’s another option.  Casey just can’t wait for all of it!  She is constantly bringing me her calendar to ask for specific dates for activities.  It’s hard for her to understand that the weather is a factor and some things can’t be planned too far in advance.

One of the decorations that make our home special is the picture with this post.  Look carefully and see that Baby Jesus is being guarded by a Teenage Mutant Ninja Turtle.  Rob got this turtle years ago in a McDonald’s Happy Meal and insisted that the turtle watch over the baby.  Every year, he looks for the turtle and places him near the baby in one of our nativity sets.  Rob kneels down and makes sure the turtle is in just the right place and that’s where it sits until I pack away the set for the year.  Rob checks each time he walks through the room to be sure the baby is still being guarded.

We stick with family gatherings and are so lucky that our family understands that Casey is deadly serious during the parties until the checklist in her head is complete.  First, you have to eat, then open presents, the take a family picture, then play games.  And when the games are played, she can smile and laugh because she is happy that everything was done and was just like the year before.  Rob joins in for parts of the party, but he also escapes upstairs to a dark, quiet room when he needs to.

I have a lot of ideas in my head of things I want to do during the Christmas season.  At times, it’s hard to balance what I know Casey would love with what Rob would enjoy.  She went to see The Nutcracker last week (my niece dances in it every year) while Rob stayed with me.  She wants to see Santa, while he probably could care less.  (She firmly believes in Santa – Rob will believe because she does, but I’m not sure he truly does.  He just won’t ruin it for her.  Empathy at it’s finest!)  She wants to make crafts and he might join in for a little while, but it doesn’t really interest him.

She wants to bake cookies.  He doesn’t care for them.  They both like to shop for presents for others – he tends to be more serious in his choices.  She knows who she wants to buy for and will grab anything at times so she can be done and look for things for herself.  They both love to wrap their gifts and watch people open them.

It’s also hard to balance what I want to do with what is best for them.  We can’t do too much in the evenings that may disrupt their night schedule or they may not sleep.  Long days away from home make it hard for Rob to relax when he gets home, so how far we can travel is a big factor in what we do.  You will have to try to balance what you want to do with what is best for your little one.  Even if they enjoy the activity you plan, will they be over-stimulated to the point that anxiety gets too high?  Will they be able to calm down when you get home?  It’s exhausting to try to think about all of the “what-ifs” when you plan something new!

While it may seem easier to just stay home, what if you tried and it went perfectly?  What if everyone has fun and you create memories that you never thought you would have?  You have to give your child a chance to be successful – even as you dread the possible meltdowns or stares from other people.  You will never know until you try!  Take those baby steps and venture out!  I know Casey and Rob are constantly surprising me with what they are able (and want!) to do now!

Start your own traditions for the season.  Your ideas may seem odd to others, but who cares?  They are for your family – your children.  Take drives to look at lights.  Make some gifts.  Bake.  Decorate as you need to.  Buy the comfy clothes your child needs to enjoy a party.   Try to relax and enjoy special events.  Find a babysitter (yeah – not easy, I know!) and leave your little one at home if you truly know they won’t enjoy what you are going to do.  (Let go of that guilt, too!)

I hope your holiday season is full of excitement, fun, love and laughs!

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Welcome to our Loud, Crazy Autism Home

Welcome to our Loud, Crazy Autism Home

Yesterday, I came across a meme created by Joy of Autism  (if you haven’t checked out her page, yet, you are missing something!) about welcoming people into her home – and reminding visitors that their home is her son’s safe place, to truly be himself.  I shared it on our Facebook page and was surprised at the response from everyone who saw it.

When we are at home, Casey and Rob are free to be themselves.  While I do remind Rob to use a quieter voice, at times, when Casey is trying to sleep, for the most part, I let them be.  They do so well at holding it together every day while out in the world – they need to be able to come home and just relax.  I do the same thing.  It’s usually only a few minutes after I get home that I’ve got comfy clothes on and I’m ready to chill for a little while.

Visitors to our home know that Rob may be singing his anxiety song or fairy dancing through the house.  Casey might be stomping her figure eights upstairs and trying to sneak into the refrigerator.  They know that I’m glad they are visiting, but I’m also always aware of what the kids are up to – that I may jump up at any time and go check on them.  Strangers who visit for the first time can either accept that or leave.  This is OUR safe place and we make no changes for others.

I remember when they were little and Mandy had friends over.  Whenever Rob took his shower, she would make sure her friends were safely upstairs, as modesty was never Rob’s strong suit.  Now, he wouldn’t dream of leaving the bathroom with no clothes on, but he may venture out without completely pulling on his pants.  We’re used to it, so if we do happen to have company, I try to position myself to block any view.  (He comes right to the kitchen for his pills and snacks after his shower.)

Casey could care less who sees what.  I have tried over and over to remind her she needs to be dressed when she leaves the bathroom, but if she got her weekend-after-bath slippers instead of her weekday-after-bath slippers, she’ll run to her room to make the switch.  (She has several classifications for slippers – and she refuses to wear a pair of slippers that aren’t right.)

So, when you visit, if I seem to be standing in the door between the kitchen and dining room and looking over my shoulder for a long time, I’m just making sure you aren’t treated to a sight you can’t unsee.   🙂   When we had the pool, Casey and Rob both would yank their bathing suits off on the back porch so they wouldn’t get the floor wet.  They never cared who might be driving by.

Rob might be ripping paper and rocking in his recliner.  He might be making noises that you can’t understand, but I do.   It’s okay if you admit you can’t understand.  It’s not okay for you to think I need to change him while you are here.  That ain’t happening.  Casey might be sitting on the love seat and playing with her iPad.  If she has it too loud, I’ll ask her to turn it down – but I won’t ask her to leave the room.

I won’t ask her to take the blanket off of her head so you can talk to her.  She’ll hear you just fine – say what you want.  I won’t ask him to come out of his room while you visit.  He’ll come out if he feels like it.  You are welcome to peek in and say hi to him, but know that he may not answer you.

It’s hard to let people into our safe place.  Any time someone new comes in, I am nervous, as you never know how people will react to autism.  I don’t think anything about it, but for someone who isn’t around autism, our routines and quirks can seem odd and not worth the effort.  (Our schedule is worth the effort – trust me.  Life without our routine is not fun.)  I can’t change our routine for you.  It’s simply not worth it to me.  At times, a slight change can keep the kids up for hours and I need sleep.

Other times, you may not notice anything odd about our home.  When the kids are having good days (and most are good!), autism isn’t obvious, unless you know what you are looking for.  On other days, you may see/hear the kids stimming to relax.  You may find their habits weird and that’s okay as long as you remember they are doing what they need to do to make sense of this crazy world.  You are welcome to ask questions.  You are not welcome to tell me how to change our world.  I will show you the door.

I’m sure that sounds terrible, but you knew about the autism before you came to our home.  If you have some experience with it and offer a few ideas that you have tried, thank you.  If you are nervous, that’s okay.  If you really want to know us, welcome!  If you are just nosy, go away.  We don’t need you.

Please, parents – let your kids be themselves – especially when they are at home.  I know you may not want some people to know just what your life is like, but really, what harm can it do?  If you are embarrassed, try to relax.  Your visitors should understand and, if they don’t, do you really want them around your children?  You are their protector, their advocate, the one they run to when they need help.

Home is their place to just be them.  We love to have visitors, but only ones who understand that we do live in a circus and we love it that way.  Accepting our wild lives is the best gift you can give us this holiday season!

 

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Autism and the Different Therapies we Tried

Autism and Different Therapies

A few weeks ago, I mentioned in one of my posts that Casey and Rob had taken Equine (Horseback) therapy and I had a few questions about how that helped the kids and what else we had tried.

Casey and Rob both started with speech therapy early.  I drove Casey to a city about 35 miles from us twice a week when she was 3 to get speech therapy.  It was the closest place for us.  Once she began preschool with our local school district, she got therapy there and once a week the therapist came to our house.  Not only was this lady an amazing speech therapist, but she had some experience with sensory issues and taught me a few tricks that I still use today with the kids.  (Thanks, Connie!)

Rob started getting speech at home, along with a preschool teacher who visited.  Both were once a week when he just turned 3.  (Mandy was still in the preschool class he would be starting, so we thought it best for her to finish the year and have him start the following fall.  With his late August birthday, he would still have two years of preschool.)

Casey continued with speech therapy when she started Kindergarten and was seeing the therapist twice a week and for group time.  Our local hospital finally had a speech clinic by this time, so I took them both every week for one on one at the clinic.  This lasted about a year, until the hospital lost the therapist.  Several years later, I would again be taking them to that clinic for speech.

Rob went to our county board of DD Kindergarten instead of going to our local school district.  The teacher he was supposed to have was one that wasn’t good for Casey and I refused to let her near him.  While he was in Kindergarten, he started Occupational therapy, along with speech.  When the school district hired an OT, Casey started seeing her, too.  (OT can be a wonderful tool to help with sensory issues!  Neither Casey or Rob had many issues with fine motor skills, but the sensory play they taught helped so much!  Thanks, Deena, Steve, and Brooke!)

We discovered that many of Casey’s meltdowns were from sensory issues.  She was simply overwhelmed by sounds and couldn’t help herself.  She didn’t have the words to tell me what was wrong, so she screamed and cried.  (Don’t misunderstand – some of her meltdowns were schedule changes, too, or my changing the routine that she so rigidly followed!)  I learned that piles and piles of blankets were an absolute necessity for both kids to be able to calm down enough to even think about sleeping.  (We still had sleep issues, but screaming wasn’t one of them – finally!)

Rob needed deep pressure to stay calm and control his anxiety.  He was terrified of loud noises (School bathrooms were a nightmare for him!) and he wore ear protection for most of his elementary years.  Not only did the head set block (he wore a set of hunter’s ear guards) the noise, but it added deep pressure to his head and he didn’t feel the need to squeeze his jaw as often.  He wore a weighted vest when he was at school and also had a weighted lap blanket for days he needed even more.

It was suggested that a swing may help him even more and the school purchased a large platform swing for his classroom.  Beth (his one on one) figured out that he could do math and spelling quickly while he was swinging so she worked with him while he laid on the swing.  Spelling was always easy for him, but although he could do the math, it had little interest to him.

In 2003 – 2004 (I can’t remember, exactly!) we found out that an equine therapy group had been started.  I knew the couple who started it and decided to take the kids one evening to see what it was all about.  I knew Casey wouldn’t like it, as she was scared to death of animals, but part of the therapy was petting and brushing your horse and I thought she might get close enough to touch one.  I also knew Rob wouldn’t be a problem – my little daredevil would try anything.

I was shocked when Casey climbed into the saddle of the horse before she was even asked if she wanted to ride!   There was a person walking on each side of the horse and another one to lead.  She sat up so tall and looked like she had been riding her entire life.  Rob jumped on a horse, too, and soon gave the volunteers heart attacks as he leaned too far one way and then the other so he could watch the horse’s feet.  I assured them he wouldn’t fall, but it took a few weeks before they believed me.

During their therapy, they had to complete different games from their horse’s back.  They threw basketballs, tossed beanbags and rings and had to stretch to ring bells.  With the beanbags, the holes were different shapes and colors and they were told which color/shape to aim for.  Rob had a deadly aim, even as he barely looked at the board.  I soon learned that while they were on their horses, they could do things that they couldn’t do normally.  They both knew their right from their left hands (After years of doing this on horses, they still can’t tell me when they aren’t on one.  Or they simply don’t care!  🙂  )

They could answer simple questions and practice their spelling words.  We practiced math facts – anything to keep drilling those lessons into their heads.  (and strangely enough, the spelling and math stuck with them when they weren’t on their horses – it seems only right/left didn’t matter).  Because there was a large group riding, the evening also became something of a social event for me.  I could talk to other parents of kids with special needs as we took turns leading horses or walking with the kids.  It was great knowing that Rob’s squeals or Casey’s obsession with socks wouldn’t be an issue!  (By the way – Casey’s horse was named Socks – how appropriate is that?)

After more than 12 years of riding, we stopped horse therapy for different reasons.  I had developed a severe allergy to the horses and could no longer be near enough to help (even with medication, there were times I could barely drive home) and the kids seemed to be losing interest in it.  It had become something that “had” to be done instead of something we all enjoyed.  If you have equine therapy close to you, please consider trying it.  It was a great experience for us.

Rob takes aquatic therapy every two weeks at the hospital to help with his anxiety and for something he loves to do.  Insurance will only pay for 26 visits a year, but we are both thrilled with that.  He loves going and he loves his therapist (Thanks, Erin!) and is always excited to tell me what he did that day.  I did have to warn her that he would sink to the bottom and sit and not to worry about him, but it did still freak them out the first few times he did it.  (It seems he will never come back up as he sits down there and grins up at you!)

There are so many therapies available to help people with autism, now.  I do the same thing with therapies that I do with meds.  I think about what good can happen, what side-effects can happen and the expense.  And I ask the kids if they want to try. Sometimes, the answer is no, and that’s fine.  I wait a few months and ask again.

ABA became popular when my kids were a little older and there was no one in our state able to provide those services.  When I taught preschoolers with autism, we used the ABLLS system and I did a lot of that with Casey and Rob, even though they were much older.  They both enjoyed the little games and I’m sure it helped some.

As with anything else concerning your child with autism, follow your gut instincts when considering a new therapy.  You will know quickly if something is working (or not working!) for your child.  Find something fun with a great therapist.  And if you would like to hear more about our experiences with the therapies we tried, send me a message!  🙂