Tag: autism families

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Autism and a Wonderful Mother’s Day!

Autism and Wonderful Mother's Day

Happy Mother’s Day to all the amazing autism moms – and dads and grandparents and everyone else who loves and supports people with autism and other special needs.

I’ve been an autism mom for 31 years. True, I didn’t actually know it until Casey was four, but I can look at the video from her first birthday party and see the signs as clear as day – if I had only known what I was seeing. Her need for routine – her preference to do her own thing rather then interact with me – her ability to say the alphabet and sing whole sings, but still not be able to say ma-ma. Yep, it’s all there.

But I don’t feel guilty about not seeing the autism earlier. In 1989, autism wasn’t in the news. The movie Rainman was popular, but I still didn’t see autism in Casey. There were no families with autism in our community. Even when she finally got diagnosed, there was only one other little girl near us. Today, I can’t guess how many families have autism in their lives in our area.

So what has being an autism mom taught me?

  1. Being a mom is hard at times. It doesn’t matter if autism is involved or not – some days are just hard. And some days with autism are terrible. Sometimes, it’s weeks with autism that are terrible. But – joy always finds its way back to us.
  2. It’s a lonely life at times. Many people don’t understand the special challenges we face and that’s okay. I don’t understand the challenges of other moms, either. I don’t understand the constant running of children from sports to dance to music. I don’t understand spending every evening of the week going somewhere for something. I love spending most of my evenings with the kids – walking, crafting, swinging on the porch swing and watching the clouds. But, loneliness is part of any family with special needs – and never feel guilty if you do feel it at times. Sometimes, you just want to go be with other moms and think about anything besides autism (I got to do that the other night – it was amazing!! 🙂 )
  3. Routines can be good. Oh yeah – I get tired of them. I get tired of having to stop whatever I’m doing every evening at 7:30 and start helping with bath/shower. I get tired of having to do things a certain way. But – on the other hand, it’s a lot less thinking on my part. I seem to turn on auto-pilot and just go with it. (Course, that also means that if I’m asked something during that time, I may not remember what anyone said to me! 🙂 ) Sometimes, especially when I’m tired, routines are good – no thinking on my part. My body knows what it is supposed to do and we go with it.
  4. Little things truly do not matter. I know – it’s easy to say, but when there are so many more important things to worry about, who cares if the coffee table is dusty? If someone complains, hand them a dust rag and tell them to have at it. 🙂 I know I don’t worry or stress about a lot of things other people do. And I worry about things other parents don’t think about very often – are the kids safe? who will be with them when I’m gone? Should I try to change meds? Do they want friends or do they even think about it? Do they know they feel things differently? (They both know they have autism, but I’m not sure whether that matters to them.)
  5. On the other hand, some little things matter a LOT! When Rob tries a new food or wears a new shirt. When Casey goes to volunteer somewhere new – and remembers to smile and say Hi and Thank you! When Rob leans on me for a hug. When Casey looks at me with that special sweet smile of hers. When Rob messages someone. When they tease each other like typical siblings do. When they look out for each other when we go places. When Casey checks on Rob constantly when he is sick – or when she thinks he has a “boo-boo” as she calls it. When Rob asks to see Mandy or Cory or Grandpa or Grandma. The smallest step forward is cause for celebration!
  6. I am strong. And that’s good and bad. I can stand up for myself and the kids – but it also makes it harder for me to ask for help when I need it. I feel like I’m letting the people who think I’m strong down when I ask for help. You are stronger than you think, too – trust me – I know this without even knowing you. Every day that you get up and start the same routine again, you prove you are strong. When you cry over the screams of your child and you are so tired you can’t think straight and you feel in your heart you just can NOT do this anymore, you are strong. Give yourself a break to cry and take deep breaths. We’ve all been there (and anyone who says they haven’t been that low are lying through their teeth!). If I can do it, you can, too!
  7. Autism has brought me so many amazing opportunities that I would have never had. I’ve met so many awesome people who keep me strong when I need it. I’ve gotten to speak to groups of people about autism and our circus. We’ve opened eyes to a new world for many people – and we blasted our way through a school system that really wasn’t prepared for Casey. We made it a little easier for the families that followed us, I hope.
  8. Laughing is better than crying. Oh – I’ve cried – more than many people know, but really, laughing is so much better. Most of the things we lived through sound funny, now. (Some don’t – some things will never be funny, but we made it!) The apples and the koolaid – jumping off the roof – hopping through doors – flipping light switches. Some days, I have to laugh or I would go crazy, I’m sure. I can’t change them (and don’t want to!) so I might as well tighten my abs and laugh at how silly they are sometimes.

These are just a few things being a mom have taught me. It also showed me what true, selfless love is. Casey, Mandy, Rob and Cory know that I would do anything for them – they are the most important people in my life. I see their flaws, as they see mine, and we love each other anyway. It’s true acceptance of who I am. I don’t have to be anyone except me with them – silly, serious, stubborn me. And that’s an amazing feeling.

So Happy Mother’s Day to all of you! My wish for each of you is a hug (in whatever form that takes in your home!) a few minutes of peace and maybe a smile from that awesome, amazing, autism child you have. Enjoy your day! You deserve it!

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Autism and the Routines we Live With

Autism and the Routines we Live With

I’ve been trying to decide all day what I want to write about autism this week. Usually, an idea pops in my head and I run with it, but this week, I have so much going around my brain that nothing is sticking. Until Rob came in to turn on the other lamp in the living room – now I know! 🙂

I’ve told you before about some of the routines we live with. Many are obsessive/compulsive – others are just the way Casey or Rob think life should be.

Rob seems to have more of these quirky “needs” than Casey, but last night, one of her quirks almost caused a major meltdown. She got out of the bath and was thrilled to have a cupcake and ice cream for a snack. (Thanks, Kenzie!) She was giggling – and then she wasn’t. She slapped her iPad and kicked her feet. I knew she was getting mad, so I calmly asked what she needed. She couldn’t or wouldn’t tell me. I was tired and not in the mood to deal with a screaming meltdown.

I kept asking and talking to her about what she would be doing this week. Finally, I said I had something to write on her calendar and she took off to get it. When she brought it to me, she pointed to today. Nothing was written on it – and I knew instantly what the problem was. She was going to Anna’s dance recital with my mom and I hadn’t written it on her calendar! I have no idea how this happened as she religiously brings that calendar to me. As soon as I wrote dance recital on it, she was happy and giggling again.

That just shows how quickly moods can change around here. It’s exhausting some days to try and think of everything they need to have done so they can feel safe and happy. Her meltdowns are few and far between now, but when they occur, it’s ugly. Thankfully, she usually gives me a warning that she’s getting upset before she is out of control – but not always.

Rob firmly believes that if the front door is open (which can only happen after a certain point in his mind) for fresh air, the ceiling fans in the living room, dining room and kitchen have to be on. And if one lamp is on in the living room, they both have to be. If the ceiling fan is on at Grandma and Grandpa’s house in the living room, the one in the dining room must be, too. I can try to get him to turn one off, but it causes him so much anxiety, it’s just not worth it.

He has to wear certain pants and shirts together. She mismatches whatever she wants to wear that day. (some days, I make her change. Other times, I figure she needs to be able to make some decisions on her own.) Pills and snacks need to be waiting when they get home from Hopewell and when they get out of the shower. It’s funny, but sitting here writing, it’s hard to remember what exactly some of our routines are. I do them automatically and without thinking about them.

Tonight is another example of their need for routine. Since Casey took a bath before she went to the dance recital, I told her she could just put PJs on instead of taking a bath. Nope – she has to have a bath. I said okay, but we don’t need to wash your hair so don’t get it wet. Yeah – that didn’t go over. And Rob kept asking about her taking a bath, because he only takes a shower after her. Honestly, if I tell him he needs to go first, he will, but he rushes through it so he can see if she is going to take her bath.

Every family who lives with autism knows about the need for routines. People look at me like I’m crazy at times because I hate to get the kids home much after 8. They are adults – I get that, but if we get home too late, they won’t relax and go to sleep. And my late evening turns into none of us sleeping until 1 or 2 in the morning. Sorry, folks, an extra 30 minutes or hour with friends is not worth that to me. I’m not spoiling the kids – nor am I letting them “rule” me. I am simply doing what is best for us. You don’t have to like it, but kindly keep your negative comments to yourself.

Our routines are such a big part of us. Like I said, every family with autism knows exactly what I mean and many others try to understand. It’s so hard to explain to people who don’t live with autism just what our lives are like. I can’t honestly say I know what my autism mom friends lives are like. I can picture some of it, but their children are so different than Casey and Rob, I can’t know exactly. I can, however, sympathize and laugh with them. (Yes, we laugh at our lives and our kids – we are not being insensitive to their needs – we are letting off steam with people who know how crazy nuts our lives can be!)

Without our routines, Casey and Rob (and I!) would be extremely anxious and upset. We do things that appear odd to others because we need to. Autism is funny that way. 🙂 Once we find a routine that works, it’s nearly impossible for me to bring myself to change it. I wait until one of the kids decides it needs changed and then we find a new one.

Autism is definitely never boring! 🙂

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Autism and Hope – Never Lose It!

Autism and Hope

Anyone that follows our Facebook page may have seen that Casey sang in our county board of developmental disabilities talent show a few evenings ago. She won one of the awards – she was happy about that, but for her, just the singing is enough. And that she got a milkshake after! 🙂

She was so excited that she got to buy a new shirt to wear. That night, she couldn’t stop giggling at supper and kept looking at me for the signal that it was time to take a bath and get ready to go. We had to blow her hair dry and use “fluffy” stuff (mousse) in it. She couldn’t stand still from excitement. Even Rob was excited about going!

When we got to the school, Rob chose their seats and Casey bounced in her seat to watch people come in. She was going to be the last one to sing before intermission. Mandy and Cory came and she bounced harder. (And Rob had to jump up and rub Cory’s face – he had shaved his beard! 🙂 I’m still waiting for Rob to tell me he wants his face like Cory’s!

I was taking pictures for the newspaper, so I wasn’t sitting with the kids. As I watched the other performers, I kept checking on them and they were always looking right at the stage and enjoying the music. When Casey’s turn came, she jumped up and ran to the stage with a big smile on her face. She grabbed the microphone and looked at me as she waited for the music. As soon as it started, she started swaying back and forth and got really serious. This year, she really belted out her song so everyone could hear.

It’s funny. She loves singing on stage but those who know her well can see her nervousness. She doesn’t know what to do with her free hand and it moves constantly from rubbing her shirt to playing with the snap of her pants to going in her pocket. She loves what she is doing, but she is scared, too. And is brave enough to do something that scares her because she loves it so much. I wonder how many “typical” people can say that? How many of us really want to try something we love, but we are afraid to fail so we never try? Those performers that night were afraid – and they did it, anyway. They had all some type of disability, but they conquered their fears to try. We could learn something from them!

When she was finished, she didn’t wait for the applause. She smiled a beautiful smile, ran down from the stage and back to her seat – still excited and happy. And thinking of the milkshake she was sure she would get when it was over.

When they started announcing the winners, she was still smiling. I truly don’t know if she cares about winning (I know some of the performers do) but she was happy to go get her award and show everyone. She loved being in pictures and couldn’t stop smiling. I still think some of that smile was knowing that a milkshake was coming.

Later that night, after we had all settled down, I thought how far she had come. I know I tell you this often, but never, ever give up on your children. I don’t care how old they are or how severely they are affected by autism. You never know where they might go!

Who could have known that the little girl who screamed for hours at a time and beat her head on everything would one day be standing on stage singing a song she loved? The little girl who couldn’t sit in a gym with a crowd of people was now sitting in a huge crowd. That sweet child who couldn’t wait 10 seconds for help without screaming sat for 45 minutes waiting her turn to sing. The child who had only a few words was singing. (Though, to be honest, she was singing as a toddler, even when she couldn’t say Ma-Ma.)

And Rob…. he hates crowds. As a child, he had to have head phones on to be near crowds of people. He couldn’t wait for things to start as his anxiety would get to be too much and he would run away. He hated flashing lights and loud music. He paid little attention to Casey (even thought he followed Mandy everywhere – and still does! 🙂 ) He is learning to message people. He wanted to be there for Casey – to cheer her on – to hear her sing.

And I cried happy tears remembering. I remember the dark days when I was sure my life would be nothing but screams and bruises and anxiety and sleepless nights. I didn’t really have the time or energy to dream for either of them. I was too busy dealing with schools and IEP’s and therapies and everything else life threw at us. I didn’t give much thought to the future – or at least. not much farther than the next year’s IEP.

I know that your child may never sing on stage or sit in a crowd. (Honestly, Rob only did this for Casey!) He or she may not have a picture in an art show. But – your child may be the one to write the music – or the book – or the movie. Or they may the one to design a new bridge or a computer game. The point is – you don’t know what the future may hold. It’s hard to look ahead when right now is exhausting you. I get that. I really do.

I’m just asking you to not give up. Dream for your child when you can. Plan for your child every day. Sometimes, it’ll be one small step forward and three steps back. I get it. Don’t lose your hope – your faith. I’ve been told before to “fake it till you feel it” and it does work. Make yourself dream and feel hopeful. And maybe one day your child will be the one singing “You’ve Got to Stand for Something” in front of her family and friends. 🙂

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Autism, God and Faith

Autism, God and Faith

Casey and Rob went to a respite time this weekend so I was able to go to church with Mom and Dad. Casey was excited because she asked me Friday about getting a palm today and I was happy to give it to her when we got home from camp. But, as I was listening to the pastor, I remembered a book I read a few years ago about autism and God. I don’t know how you feel about God and faith and I am in no way trying to convince you to think like me. I am only sharing – just like always. 🙂

I read a book by a mom who was devastated because her child with autism wouldn’t be allowed to go to Heaven. Mind you, I had never considered my kids wouldn’t be able to go to Heaven. They don’t understand “sin” and both, especially Casey, talk about God, Jesus and Heaven. Rob focuses more on Baby Jesus and on his grandparents in Heaven.

Anyway, this mom wrote that because her child couldn’t confess her sins and ask God to forgive her, she would never be allowed in Heaven – she wasn’t saved. Honestly, I thought the mom was a nutcase, but it still bothered me a little that someone could think my kids are somehow less than good Christians, simply because they couldn’t speak like other people do. I tossed the book in the trash and hoped that the mom could find peace somehow.

Listening to the pastor talk about salvation today, I started thinking again about the people who can’t communicate and how many of the people in the church were talking about asking for forgiveness and salvation. I wondered if they would believe Casey and Rob would see them in Heaven – even if they couldn’t ask for salvation. I believed most would, but I’m also a realist and know that some people are set in their ways.

Several years ago, I wanted to get Baptized and have all three of the kids Baptized with me. In the church we went to at the time, Baptisms were always done in front of the congregation on Sunday mornings. I knew Rob would never be able to do that and even had doubts about Casey. I also knew there were people who wouldn’t believe it was a “real” Baptism because the kids weren’t able to actively participate.

I worked at the church at the time and approached the pastor about what could be done. Pastor Coralee simply said “We’ll do it however will make them comfortable.” And that was that. Mandy and I had several conversations with Pastor Coralee about our beliefs and I bought a children’s book to read to Casey and Rob about Baptism and what it meant.

Rob just thought we were going to take a shower at church (because we were going to be “clean”) and Casey didn’t say much. We decided to have an evening ceremony and to surprise my parents. They had no idea what we were doing that night – only that I had a meeting I needed them to be at. We also invited the kids’ “other” grandparents, Rick and Lyn. They knew what was happening. I ordered cupcakes and we made a real celebration of the event.

Casey and Rob were fine with getting water on their foreheads and Casey even said she was clean when it was done. I think everyone had tears in their eyes – we definitely shocked my parents, who arrived with pens and notebooks to take notes during the “meeting.” 🙂

In the days after our Baptism, I shared with Pastor Coralee the book I had read and asked what she thought. She knows the Bible forwards and backwards and I knew she would never lie to me about what she thought. I asked if she thought the kids would be kept from Heaven because they couldn’t ask God for forgiveness.

She sat quietly a minute and then simply said, “God made Casey and Rob in the image He wanted them. Why would He punish them for being who He wanted them to be by keeping them from joining Him in Heaven?” That was exactly how I felt, but it was wonderful to hear our pastor shared my feelings. 🙂 I hope she knows how happy her words made me that day. I doubt she even remembers it, but I do.

For many of us, worrying about Heaven is not something we have much time for. There are behaviors to deal with and doctors and therapies and school and insurance companies and groceries and jobs and….. the list goes on. But, if the thought ever crossed your mind about your child, remember what our pastor said. Your child is exactly as God wanted him/her to be!

Again, I am no way saying you need to share our faith. There were many times that the only prayer I could manage was “Please, God” before I broke into tears. But I know He heard what I couldn’t say and He’s given me a lot of strength over the years. God knows what is in your heart, even when you can’t say the words. You need to believe however feels right to you – whatever gives you the strength you need to take care of you and your family.

Autism is tough at times. You need to lean on others, whether it is friends, family or God. Let yourself ask for help when you need it. 🙂

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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 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 Terrible Anxiety

Autism and Terrible Anxiety

I’m not going to lie. Yesterday was NOT a good day here. We don’t have rough days often – or at least days that the “roughness” lasts all day, but that’s what happened. I even wrote a blog yesterday, but I had to delete it and start over. It was terrible!

So – in the last week, we have missed a day of work for ice (which Rob knew was coming – and I would have, too, if I had picked up on his clues. Now it’s obvious – at the time, I wasn’t thinking about the weather at all!), I had an appointment that didn’t go as I had hoped and I was anxious about that, we had a huge snow storm heading for us and then, of course, the full moon/eclipse for tonight. It’s no wonder we were all a little anxious, but it was worse than I thought.

Instead of snowing early yesterday, it rained. And rained. And rained. I mean, pouring buckets. We all wanted snow. I was already worried about how Rob would be feeling when he got up because he had a hard time getting to sleep Friday night. It’s been a while since that happened, but he was awake until after 1, quietly singing his anxiety/storm song. I knew the storm was coming.

I let them sleep as late as they wanted and he seemed okay when he got up. But, as soon as Casey got up, he ran to her room and started watching Power Rangers. That was fine for a while, but then he started his storm song. She was anxious about the weather, too, and wanted to be in her room folding socks and listening to music. He wouldn’t leave. (He has a DVD player and TV in his room, but he refused to use it. When I brought the movie to his room, he ran in, grabbed it, shut everything off and went back to her room). So I was waiting for her to have a meltdown. Irritation was written all over her face.

His song got louder and he started adding a few yells every 4th or 5th repetition. I gave him clay… magazines… his iPad…. offered him snacks. Nothing worked. By evening, I was even more on edge and ready to have a crying meltdown. I kept praying that it would start to snow (Sometimes, that helps him calm down – that the storm was actually here). But nothing but rain…. dreary, depressing rain.

By supper time, he had been repeating it over and over for 6 hours. I counted once – he averages 3 times a minute. That’s over a 1,000 times. It’s not that he was close by us, but the sound carries. It’s like a mosquito buzzing in your ear. It’s not loud, but drives you batty. And trust me, I don’t need anything else to drive me nuts. 🙂

After supper, Casey relaxed. She was grinning and talking about dressers and stuffed animals and her birthday (not til March, but why wait?) She giggled and smiled and truly, I didn’t care why she was happier, only that the threat of a screaming meltdown from her seemed to have passed.

When he came down for his shower hours later, I told him he couldn’t watch Power Rangers anymore, as Casey would want to watch Elmo before going to bed. As soon as he got out of the shower, he ran back up to her room and started the movie and the singing again (he also sang through his shower!) When she was ready for bed, he came down, but his song was even louder down here. I was as close to tears as I’ve been in a long time. I just knew he wasn’t going to go to sleep.

He finally took a pile of magazines, but kept repeating his song. (Someone suggested I record it so you can all hear it, but I’m not sure I want to do that.) I took Blue outside and went to watch TV while I waited to see what he would do. In less than 10 minutes, I realized I hadn’t heard him and was shocked to find him sound asleep! I just kept thanking God over and over and prayed that he slept all night.

He started “singing” at 11 yesterday morning and finally stopped at 9:30 that night. He repeated it almost 2,000 times. I call it his song, but there aren’t always many words. You can understand “John Anderson, John Michael Montgomery, Josh Turner, Long Black Train” and sometimes “Splat” after a series of sounds like trains on tracks. The beginning is always the same, the ending changes. Some days, I don’t even notice it.

I was worried that today would be a repeat of yesterday because even though the storm has passed, the full moon and eclipse are still tonight. (Anyone who says that doesn’t effect anyone needs to live in my circus through a full moon cycle!) I’ve even heard that the new moon bothers some people. Some months, Rob is more anxious for about a week around the full moon. Other times, he doesn’t seem to be too concerned about it. Casey feels it just for a few days. It may bother him more because he has more anxiety than she does.

I am so blessed to be able to say that, so far, anyway, they are both happy today. He is really quiet and doesn’t want to talk very much, but he has his iPad and magazines. I haven’t heard that song at all (Knock on wood!!! 🙂 ) She has been laughing all day. She is also happy their workshop is closed tomorrow – another reason he may have been more anxious, since that’s a change in his routine.

If his anxiety was the result of all three things happening together, at least I don’t have to worry about a super blood wolf moon eclipse for a few years! (Always look on the bright side! 🙂 ) I’m sure he doesn’t feel like himself today, but he’s coping and that’s all any of us can do. The wind is blowing and that always bothers him, too. Today will be a demand free day – they can do what they want without my interference! (well, most of what they want, anyway! 🙂 )

I hope that each of you are coping, too. Deep breaths, folks. Or cry, if you need to. If you are near the snow, be safe!

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Autism and a Brand New Year

Autism and a Brand New Year

The end of a year is always a good time to think about where you have been, how far you have come and what you want in your life.

Where have I been? That’s a tough one. I’ve been stressed and angry to the point of tears. I’ve been so tired I can’t function. I’ve been stretched financially.

I’ve also been incredibly blessed. Blue came to live with us. Casey and Rob are making huge strides every day. I have a supportive, laughing, loving family. I have a best friend who more like a sister to me. This blog and our Facebook page are growing.

How far have we come? Farther than I could have ever imagined. Autism no longer defines me. It does shape us in many ways, but it’s not defining. (if that makes sense! ☺)

What do I want in my life? More chances to spread our story. To write a book. To be completely organized. To work out every day. To yoga more. More time with my brother. More time to craft and read. Less stress and tears. A plan to figure out how to do all of this without quitting my job. ☺

Casey and Rob always have such awesome perceptions that I don’t always think about, so I decided to ask them what they would like in 2019. (asking where they had been or how far they have come aren’t questions they would understand easily.)

When I asked Casey what she wanted from 2019, she said turkey and stuffing, to go to Grandma Rose and Grandpa Mack’s house, see Uncle Jeff and buy coloring books.

Rob wants to buy signs, go to McDonald’s, go swimming with Bob and Erin (aquatic therapy) and go to Salt Fork with Mandy and Cory.

He went to his room and came back. He wants to go hiking with Tracie and Casey added find a railroad tunnel with Tracie. (One of the state parks we hike at has a railroad tunnel we didn’t find last summer. ☺)

They didn’t worry about money, a better home or a better version of themselves. They wanted simple things that make them happy. A lesson we could all learn.

Every year, we seem to make resolutions to make ourselves better – lose weight, make more money, be this, be that. How many announce their resolution is to find simple joys? Let’s face it, sometimes, a life with autism is tough! Why add more stress trying to make improvements on you?

My resolutions this year are to find more laughs every day. To forgive people, if only to help me feel less stress. To hug more. To read on my porch swing. To praise more and critcize less. To find simple joys every day, write them down and put in a jar so at the end of 2019, I’ll have 365 amazing moments to remember.

My wish for you is the same. Find time for you – you can’t care for your child when you are burned out. Remember the things that bring you joy and look for them every day. Autism is hard. I know that. There are still joys to look for. Maybe it’s only 90 seconds to run to the bathroom by yourself – enjoy every second! ☺

Make this your resolution.  Don’t think you have to lose weight – think that a few minutes of exercise will relieve stress.  Change your resolutions into something easier to think about.  Don’t think about major changes.  Think about small steps – maybe clean out one closet as a step towards organization.  With autism, you don’t have a lot of extra time – so maybe just plan to find those precious few minutes every day just for you.  Minutes are there – you just have to be really creative to find them.  You need to do this – for your child, for your family, for you!

Happy New Year!

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Autism and How to Survive (and Maybe Enjoy!) Holiday Parties

Autism and How to Survive (and Maybe Enjoy) Holiday Parties

One of the statements I hear most often is how people dread holiday parties when their children has autism.  I am lucky – my family understands and loves my kids.  Even with this support, there are still times I worry about going to family events.  (And I can hear my brother, now “Just chill!”)   I try to, but I overthink when I’m tired or stressed.

It was so  much harder when the kids were younger.  Their sensory issues (especially Rob’s) and her need for strict schedules caused more than a few stressful moments.  Some family members didn’t understand – some thought they could be disciplined enough to lose the autism.  (They don’t see those people anymore!)  Now, I still need to consider their sensory issues, Rob’s anxiety and her strict schedules, but it’s easier to handle.

When you are deciding whether to attend a party or not, I think the first thing to consider is how the people feel about your children.  This may not sound nice, but if you know the other party guests will not be accepting of your kids, you need to consider whether they will be kind to them or say cruel things.  Your first priority is always to protect your children from people like that.  Family or not – if someone is not kind to my kids, we stay away.  I don’t need that and neither do they.  I know it’s hard to do sometimes, but really, why would you want to be around someone who isn’t kind to your kids?  

If you choose not to go, simply tell the hostess you have other plans for that day.  Or, simply tell them the truth – that you think it would be better for your children if you not come.  Remember – anyone who loves you will understand.  And, if they don’t understand or get upset – they aren’t your friend.  You don’t  need that in your life.  That’s the thing to always remember – those who love you will understand, no matter what.

Once you decide to go, think about what you might need.  If you have a child who is a picky eater, bring food with you that they will like.  Explain to the hostess that your child has a special diet and that you bring food wherever you go.  It’s silly to me that if someone has a food allergy and brings their own food, no one thinks anything about it, but if they have sensory issues and need a special diet, people are insulted.

I suppose it is because unless you live with sensory issues and the problems they can cause, you simply can’t imagine how difficult life can be for anyone with them.  It’s impossible to understand that foods can make a person gag or have a meltdown if they are afraid they might be forced to eat something.  We have lived with sensory issues for so long, yet there are still times that I miss a clue that something is bothering Casey or Rob.  Especially noises – I don’t always hear what they do.

So pack snacks or a meal for your child.  Bring whatever utensils they may need to eat.  Feed them early if you need to or give them snacks throughout the party.  Do what you need to so your child can relax and you can enjoy the party, too.

Bring an iPad if your child enjoys that.  Yes, you may hear comments about using an electronic babysitter (usually from parents who give their child their phone or park them in front of the TV to keep them entertained!) but, again, this is about your child relaxing, not worrying about what others think.  This is to help your little one get through a party – and maybe giving you a few minutes to visit with other adults.

If your person with autism has trouble with noise, bring a pair of noise-canceling headphones.  Ask your hostess if there might be a dark, quiet room (or even a corner of a room) where your child can go to calm themselves if they start getting anxious from the crowd.  

Let your child wear whatever they are comfortable in.  Yes, it would be awesome if they were wearing a cute Christmas dress or outfit, but is it really worth it to have a screaming child because the clothes are not comfortable?  Nope, not at all.  Even if the party is a “dress-up” kind of party, let your child wear something they are happy in – or don’t bother to go because it’s not going to be a good evening.  You might be okay for a little while, but sooner or later, they will decide the clothes are too much.  You will be looking at a meltdown or a naked child running through the party.  (yep – been there, done that.  Three year old Casey once stripped to nothing at a family reunion because she wanted to play in the wading pool and refused to get her clothes wet, even though I told her it was fine.  She stepped in pool with clothes on and stripped before I could stop her.   🙂  )

If your child needs deep pressure to stay calm, bring a weighted blanket or sleeping bag with you.  Pack a bag of favorite toys or fidgets – even if your child is an adult!   Age doesn’t matter when you need something!   Let people think what they want.  Your child’s happiness is your goal – not to live by another person’s warped opinion.

Please, if you are having a party, invite the family with autism.  They may have to say no, but you have no idea how good it feels to be invited, even if you decide not to go.  Ask the family if there is anything you can do to help them enjoy the party.  Offer a quiet place for the person with autism to relax.  Consider their possible sensory issues as much as possible – leave the scented candles unlit, dim what lights you can.  You have can’t imagine how amazing it feels to know someone is willing to go the extra mile to make sure your child is able to attend a party!

I know how hard it is to decide to go to parties.  Like I said, I still doubt myself at times.  But – you can’t let autism always rule your life.  That isn’t fair to you or your child.  You will never know until you try – and you just might get a beautiful Christmas surprise.  Go and be ready to leave if you need, but give your child a chance to show you and everyone else what he/she can do!  Plan ahead and don’t worry about what others think.  You don’t need that stress.