Tag: autism parenting

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Why We Are Autism, Apples and Koolaid

Why We Are Autism, Apples and Koolaid

I know it’s an unusual name for a blog and Facebook page, but it fits us. I’ve been asked a few times in the last month why this is what I chose to call our blog. Since I’m not feeling the best today (just a head cold – yuck!) and my head feels foggy, I thought I would just share our first post with you. We have gotten so many new followers that may not have gone back and read older posts and it’s a really funny story… now, anyway. The day it happened, I was not a happy person.

Enjoy! Laugh – if nothing else, this a good reminder that even terrible days can be funny later. 🙂

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Welcome to the first post on Autism, Apples and Kool Aid.   I’m the mom of three amazing kids – and a wonderful son-in-law!   My oldest daughter, Casey, and my son, Rob, both have moderate autism.  Our autism journey started almost 28 years ago and what a wild ride it’s been!

I’m not here to tell you that autism is easy – but it isn’t the terrible disaster that so many seem to think it is, either.  My hope for this blog is to share my circus in the hope that families who are on this journey with us will share our laughs and our tears – but ultimately realize all of our kids are our most precious gifts.

The name for this blog came from one day that is stuck in my memory.  A day which has proved that, sometimes, autism sucks, but sometimes, it’s our reaction that causes more problems.

Rob was 8 or so at the time and we had just finished remodeling our dining room.  I was in another room when I heard thump, rumble, rumble, crash, splash and Rob’s giggles.  What the heck?  As I ran towards the sounds, I heard it again – thump, rumble, rumble, crash, splash and giggles.  I found Rob in my beautiful dining room with an apple in his hand and red Kool Aid running down my walls.

It took a second to see the plastic cups of Kool Aid lined up on the table and for the dots to connect.  “Don’t throw that….” I shouted as he launched the apple across the table.  It connected squarely with the next cup in line.  The cup flew in the air, the Kool Aid went everywhere and Rob doubled over giggling.  I just stood there and looked.

When he picked up another apple, I sprang into action and grabbed the apple from him.  He laughed, hugged my legs and took off for his room.  I was left standing there watching red Kool Aid run down my walls, off my curtains, down my windows and drip from the ceiling fans.  I was furious!  What in the world possessed him to do something like this?   He had gone bowling a few days before and I guess he decided to make his own at home.

It took me forever to get the room cleaned up.  All the while, I’m mumbling not so nice words under my breath.  Steam was probably coming out of my ears by the time I got done.  I mumbled about autism… about red Kool Aid…  about sticky floors…  about not being able to handle this anymore.  I’ll admit, my anger took over.  Now, this is funny.  At the time, I was ready to explode.

Finally, the room was clean.  I was sweating like crazy and still mad about the mess…. and I flipped the ceiling fan on.  You guessed it – in my anger, I had forgotten to clean those blades…. and little spots of Kool Aid flew all over the room again.  My temper exploded and I began to clean again.

But – after the anger passed, I realized that day taught me a valuable lesson about living with autism.  Often, our reactions to what happens make problems worse.  Had I stayed calm, I would have thought to clean the blades (I hope!).  I wouldn’t have been so hot to flip the fan on.  Had I just cleaned the room and laughed with Rob, I would have only had to do it once.

I’m not always successful, but I try – really hard – to make sure my reactions to my children’s behaviors don’t cause more problems for all of us.  Sometimes, my reaction is simply to walk away until we are all calm.  Walking away isn’t always bad.

So, welcome to my circus.  Come back to soon and let’s learn together how to live, laugh and love with autism!

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Perceptions of My Life as an Autism Mom

I was at an event a while ago and two different people made comments about the life I live. I didn’t think much about it while I was there, but driving home, I wondered about their observations. One is a close friend, the other an acquaintance. I started thinking about the perceptions people have about me and my life.

One perception people have about my life is that it’s never quiet. Ok – I’ll give them that one. There are quiet times in my house, but only when the kids are not here or are asleep. If it’s too quiet when they are here, I go see what they are up to. But – doesn’t every parent do that? And how many homes are quiet when the kids are home? Why do people think my house would be any different than theirs?

They may hear kids talking in their home. I do, too. Often a little louder and not as understandable as most people, but talking just the same. They may hear toys. Yep, got that, too, since Elmo and Casey’s toy piano can be heard often. They may hear music or movies. Yep – the same movies over and over again. But Casey’s music changes, depending on her mood.

Another perception is that I never get any sleep. When the kids were younger, this was true and, at times, we still have rough nights around here. (crazy weather and full moons are not my friends!) I finally found the right combination of meds for Rob to help him sleep, so most of the time, we all sleep well. (Knock on wood! 😊)

Here’s a good one.   People think I’ve got the patience of a saint.  🙂  🙂  And I do – with my kids, with people who have special needs.  But – if you are rude or obnoxious…  hmm… nope.  My patience stays with those who need it.  🙂  I will be nice as long as I can, then all bets are off!

Honestly, the perception that bothers me the most is that we need pity. I get why people might think this, but really, it just irritates me to no end.

Why would anyone feel sorry for us? Casey and Rob are happy. They have everything they need and most things they want. (I say that because right now, they want to ride rides at our county fair, which has been canceled. Thank you, covid… Now go away!) They love going for walks, buying coloring books and socks, playing cards and construction paper.

Do they have struggles? Sure – but we don’t need anyone’s pity. We need compassion and understanding. Every family has struggles – some are just really well hidden and ours are loud and more obvious at times. 😊

Yes, my life is different than most people. It’s different than my autism mom friends. But that’s ok. Being different keeps life interesting and fun. Yes, I do feel lonely at times and, yes, I definitely get tired of helping with baths. Yep – get tired of worrying about the future. Yep – get tired of always needing someone to be with Casey and Rob.

But – I also get to spend evenings on the patio with them, listening to giggles. I still get to believe in Santa and the Easter Bunny. I get to celebrate every… single… holiday. I get to have supper with them every night and tuck them in bed. (Usually more than once! 😊)

Instead of just assuming what my life is like, ask questions. I don’t mind and would much rather someone ask than not. The only way to make the world more accepting of Autism is to get information out and spread it around! That’s why we go places. Some times, our days out don’t go as well as I would like, but that’s okay. I can have a good cry (either on sadness or anger) and move on.

Our lives are different than yours. And I wouldn’t have it any other way. 😊

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Autism and a Busy Week Back in a Changed Routine

Autism and a Busy Week Back into a Changed Routine

Last Sunday evening, Casey, Rob and I talked a lot about going back to Hopewell on Monday. I wasn’t sure about a lot of the details, but I sat with each of them and answered as many of their concerns as I could. It was hard, since I wasn’t sure about much of the routine, either, but I could tell them that I would be taking them each day (the shuttle they used to ride are now public transportation – anyone could get on with them. I’m too paranoid to let them ride with complete strangers right now) and picking them up.

I told them that they would be in the window room with 8 of their friends, but that I didn’t know who their group was. They were so excited to be thinking about going back to Hopewell, I’m honestly not sure either of them was really listening to me, beyond that there would be no shuttles right now.

Hopewell is opening later, so we could sleep in and not have to rush around Monday morning. How crazy is it that it took me forever to pack their lunches? Three months of not packing lunches was great and I just couldn’t think what they each liked to have in their lunch. They were both up earlier than they needed to be – too excited too sleep in. Rob even put a new shirt on without a fight! They both giggled and giggled as we waited until it was time to go.

When we got there, Rob wanted to go into the cafeteria, as that was their usual routine. They gathered in that room before starting their day. He got a little anxious when I wouldn’t let him go in and then a stranger was trying to make him go to the big room. He started flapping at his ears – getting worked up. Casey ran down the ramp to the window room, but she couldn’t get to her locker. She turned and looked at me. Rob was really stomping by then because he couldn’t get to his locker. (They had to build a “wall” to separate the two groups – they are not allowed to be near each other because of the COVID – 19 worry.)

I was close to tears as I left. I could feel their anxiety and worried all day that they were not listening to their staff person – that they were taking their masks off or running to other areas of the building. (In normal times, they have several rooms that they can go to for different activities). Bob and Reagan picked them up right after lunch for their usual fun time. Rob went to aquatics – Casey got ice cream and a coloring book.

When they were dropped off at home, they were both happy and smiling so I took that to mean their day was good. I got a text later that said they both did well and that the staff was working to iron out some bugs in the routine to make it easier for everyone.

Rob still seems happy to be going to Hopewell, even with the changes. They have to have their temperatures taken as soon as they enter the building and they stay in one large room all day. I need to find out what they are doing all day. They have both brought crafts home, but I know they will both get bored with that at some point.

I think Casey might be already. She thinks of Hopewell as a social place. She is used to going out of the building most days to volunteer or for walks. They are not leaving the building and she is already asking for her “trip” papers. I told her there wouldn’t be any trips and she is not a happy person. Wednesday evening, she was working herself up into a major meltdown until I told her that we were still going to do our plans for the summer.

We made a list of things they both want to do this summer and I told her we would still do them. She asked about Hopewell and thought it was funny when I told her if we wanted to do something, we would just skip Hopewell. But, then, she wanted to start writing on her calendar when we would be hiking and swimming. I tried to explain to her that we can’t write things like that because we have to watch the weather and she managed to work herself up again.

When she gets in one of these moods, she flips her head and her eyes get very intense. She can’t stop asking questions – always the same ones over and over until I am ready to scream. But I also have to walk a thin line, as if I get upset, then she escalates quickly. I’m sure part of the issue was being tired after a long week and partly, being upset that Hopewell has changed in ways she can’t understand and doesn’t like.

By Thursday, she was focused on going hiking and taking pictures and refused to hear anything but that we would go. Luckily, she was happy with a short walk and posing for a few pictures on our way to my parent’s house. But, yesterday, she started in again about canceling Hopewell on Wednesday and going to a state park for a long hike. She doesn’t want to hear that we can’t plan anything outside right now because of stormy days coming. She wants to hear she can do everything she wants. (don’t we all want to hear that?? 🙂 )

I am worried that this is going to be our new normal. He is going to want to go to Hopewell and she is going to want to skip it. I expected their first weeks back would be stressful for both of them, but honestly, I thought it would be Rob having more issues than Casey. I was sure his anxiety would flare up with all the changes he has to deal with. She has been so relaxed about all of the changes since March, that I thought she would continue on that path.

And right there is something I’ve learned really well with autism over the last 30 years. Never expect anything, cause it will change. And usually faster than I ever dreamed it would. And it also points out how far he has come. Anxiety is something that he has had to deal with for 10 years. He has learned not to let it overcome him and tries to come to me for help before it gets out of control. I never thought that would happen.

Of all the changes that were going to happen at Hopewell, I cannot believe that I never thought about her “trips” as being an issue. That’s all on me – she loves going places and I never even thought about preparing her for staying there all day. I know how much she loves being out – definitely a “duh” moment for me.

I’m anxious to see how this week goes – to see if she is more accepting of their new normal or if I’m going to need to take drastic measures to help her stay calm. As well as she has done with everything in the last three months, I think she is finally reaching the end of her patience. (Aren’t we all?)

So fingers crossed for a nice day that we can go hiking. And for him to be okay with skipping Hopewell! It seems like this could be a rock and a hard place for me, but then I think about how quickly they change and know that worrying isn’t going to help anything. One day at a time… one step at a time.

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The Search for the Perfect Autism Parent

The Search for the Perfect Autism Parent

Yes – you read that right. I’m looking for the perfect autism parent. I want to find one who has never made a mistake – never second guessed themselves – never wished for a minute of quiet – never yelled – never cried. Come on – everyone stand up. I want to see just where these perfect parents are. You know – the ones who judge all other parents. The perfect ones.

This has been a tough few weeks for people with autism – adults and children. An adult was held by police officers because he “refused” to tell them his name. He had wandered away from his group, gotten upset and someone called the police, thinking he was on drugs, as he was rocking and twitching. A child was lost and later found, thankfully, with the family dogs watching over him. Another child was killed by his mother. Another child was “rehomed” (yeah, that’s the word they used.) Another child is still lost. And those are just the few I’ve heard of.

But – the common thing in every post is the “perfect” ones saying they do not understand how the child got away – don’t the parents watch him? Why didn’t the parents make sure the adult had an ID on him? Didn’t they consider this could happen? How could a mother drown her child? How could parents give away a child they adopted because he was too difficult? The endless questions – the accusations.

I’ll admit – I was floored by the parents who broadcast to everyone they “rehomed” the child they had adopted when it became difficult. And I was sick to hear about the mom that drowned her son. I can’t imagine. I just can’t imagine being so desperate that ending a child’s life seems like the best course of action. (My guess is they will discover mom has mental issues, but who knows?)

As the for family that gave away their son… I pray that little boy has found a family that loves him and will do anything for him. Personally, I suspect the adoption and the “rehoming” were part of a publicity trick for them, but I don’t know that. It’s only my opinion.

But Facebook pages blew up when it was announced. People were accusing them of many things and many were saying, “I would never…..” The thing is – you can say that, but you aren’t in their shoes. You have no idea what you would do under the same circumstances. You can believe what you want – but you don’t live in their shoes. You may think they are disgusting humans for what they did and that’s okay. But, instead of blasting them on Facebook – why not just pray for the little boy?

Instead of tearing up a parent who lost their child, why not consider that it may happen to you! I’ve “lost” Rob several times. Thankfully, he was always around the house or the yard, but I would blink and he was gone. He was sitting on the edge of the roof once (scaffolding was up for the guys putting the new roof on). He was laying down on scaffolding once and never made a sound as we ran around yelling his name.

He pushed the mattress on Mandy’s bed away from the wall a few inches, squeezed himself into the space, covered up and went to sleep. He grabbed his bat and ball and crossed the street to play ball with other boys on the ball field. Let me be clear – I was close by every single time. I would turn to help Casey and he would vanish. I thank God every day that he never vanished when we were away from home. (Honestly, though, I usually had a death grip on both he and Casey).

We need to stop criticizing other parents. If someone asks you for help or for ideas, by all means, share them. But you can do it in a nice way. You don’t have to be critical of what they have been doing. Be nice. It’s that simple.

I’m sure other people have comments about me telling the kids they need to head to bed at 9:30 each night. After all, they are adults and should be able to make that decision on their own. I know that – and I feel guilty that I don’t let them stay up. But, I’ll be honest. I need that time for me. I hate to admit it, but I do. I need Rob to have time to settle down before he needs to be asleep. Casey needs to stay on her routine. And they both need to learn other people do need to sleep. They need to understand that after dark is quiet time. Sleep has been an issue for both of them at different times. I refuse to go back to those times. I was a walking, talking, crazy, sleep deprived, half human mom. For the good of all of us, they need to sleep.

But, yeah, I do feel the guilt. I don’t need someone who doesn’t live here or doesn’t have any idea what we’ve been through to tell me I should let them stay up until they want to go to bed. I will be nice the first time I’m told. I won’t be nice the second time. You have had your warning. I promise you – I am harder on myself than you could ever be.

Every one of us can say “I would never….” to any circumstance. And maybe you wouldn’t. But why hurt a devastated parent by tearing them down? It serves no purpose, unless maybe to make you feel as if you are a better parent. I try hard not to judge others for their parenting mistakes. Like I said, I’ve made more than a few, with all three kids. Some of those mistakes are funny, now – some aren’t. The times I screamed back at Casey for hours of headbanging and screaming are moments that break my heart. I kept control as long as I could, but there were a few times that the endless screaming just got to me. Maybe I thought, foolishly, that if I yelled back at her I could get her attention. (for the record – that never works.)

So, please, the next time you hear about a child who wandered away, pray for their safe return. If you want to mumble your thoughts to yourself, fine, but you don’t have to take to social media to spread more hurt and anger. With everything that is happening in our world right now – the riots, the racism, the negative attitude towards police officers – do we really need more hurt and pain?

We strive to teach our children to be kind – to be nice. We teach that everyone can be friends. People with autism have the biggest, most loving hearts – maybe we should all take a lesson from them and learn to love everyone. No judgement, no hatred, no negativity. Just kindness. That’s what we want for our kids, right? A kinder, happier world? Where they are loved and accepted for exactly who they are?

Change starts with us. We can make the world what we want it to be. Be kind. Be safe.

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Autism and a Well-Deserved Pat on the Back

Nine years ago, Rob graduated from high school. It’s been 11 years for Mandy and 13 (how is that possible??) for Casey. Whether your child is graduating from high school, college, or preschool this year, stop and give yourself a pat on the back. School isn’t always easy for families with autism. I know there were many times when I just wanted school to be done. I didn’t really care what happened when school was done – I was just so tired of dealing with it. Even during the easier times, it was always in the back of my mind – when will the stuff hit the fan, again?

In many ways, Casey had a much harder time in school than Rob did. Her sensory meltdowns scared other children and made it harder for them to want to be friends. Not that she cared. She was her own world and, in many ways, still is. She likes herself just the way she is and if you don’t like her, that’s your problem, not hers. (I’ve learned to be a lot more like her in this respect! 🙂 )

And – Casey was the first student with moderate autism (and major behaviors!) that many in the school district had ever met. They simply had no idea what to do with her. I wasn’t much help, at that time. Autism was still relatively new for me, too. So, every year, the battles between me and the school started again. Once she had a better teacher, it was often the teacher, aide and I against the school. Honestly, I never realized what a bad position that put Stacey and Karen in – I can’t believe I never thought of that. But – it was so good to have others see how amazing Casey was. She just needed the right supports.

Rob was mellow. He followed along with his classmates and he loved his aide and his teacher. He had a big group of boys that played with him and helped him navigate the social parts of school. He still talks about those boys and I hope so much that they know how much they mean to us! Rob had his own difficulties, but since Casey had already opened many eyes, his needs were quickly met. (again – an amazing teacher and aides!) Autism was becoming more known by then, too.

Despite her sensory meltdowns, Casey participated in more school activities than Rob did. She loved being part of the musical programs that they school held. Because we knew the crowd noise would be too much for her, she practiced with her class and I was invited to attend the final rehearsal so I could watch her. She didn’t attend the actual evening performance. And that was okay – she didn’t care because she got to sing at school.

They both participated in their 6th grade graduation and awards day. She was excited and followed directions carefully. He was not happy – too many people were watching him. His aide walked with him to get his certificates and he ran back to his class. And that was okay, too. Had he decided not to walk up at all, that would have been okay. Don’t sweat the small stuff, you know.

Casey was even a part of her high school graduation. She wore a dress (oh my Gosh!) and her cap and gown. I sat in the audience feeling like I was going to get sick at any moment. I just knew she was going to throw her hat or flip her dress over her head – something. It was so hot in that gym and I’m telling you – the speeches were the longest of my life. I just wanted it to be done before she got upset. I knew it was silly to worry as her teachers were close by if she needed them. But still…. In the end, she was fine. She proudly stood in line and walked across the stage. However, the look on her face when she was handed her diploma was priceless. You could see her thinking “this is what the fuss is about? a piece of paper??” 🙂

We didn’t attempt graduation with Rob. His fear of crowds and inability to handle heat were going to be too much for him. And the fact that he didn’t want to do it. Simple as that. And that was okay. I didn’t really want to sit through that long ceremony, either. (On another note, Mandy didn’t attend her high school graduation, either. She attended our local career center and chose to go to their awards ceremony, instead.)

No matter where your child is today, please take a moment and acknowledge yourself and your hard work. Getting kids through school is never easy, but when it seems you are constantly fighting for therapies and adaptive services, it can seem like school will never, ever end. And when it does, a whole new scary world opens up. But, those are thoughts for another time.

Stop – right now – and think about something you had to fight for for your child. And remember that you got through it. As the saying goes, I’m scoring 100% for getting through tough times because I’m still here. There will always be something else your child needs, but the fights will not always be as difficult. Congratulate yourself for “graduating” with your child and enjoy every minute of celebration – whether you have a high school graduate or a child moving up a grade – celebrate! You did it! Your child can’t do it alone. You had a part in it – big or small, you helped them get to where they are! You deserve a high 5!

Congratulations for making it through another year of school… or for getting through this crazy stay at home stuff. You got this! Remember how lucky your child is to have you!

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Did I Cause Autism in my Children?

Did I Cause Autism in my Children?

Today, hearing a parent wonder if they caused their child’s autism would shock most people. Today, it is known that autism is a neurological disorder. Today, autism is well-known, even if it is still not always understood. But, when Casey was diagnosed, it was a different world. It wasn’t something very many people knew anything about, unless they had watched the movie “Rainman”. And, even then, many people wondered how many liberties had been taken to make a better movie.

I’ve mentioned before that the first book I was told to read when the doctor gave me her diagnosis scared the hell out of me. As I read it, I highlighted parts to come back to – I was ready for research to help my little girl. There was no internet. I had books at the library. A local bookstore was managed by a good friend of mine’s mom and she ordered the book for me. Since I was told it was the best available, I wanted my own copy. I still have that terrifying book on my shelf of the autism books that I have really enjoyed over the years. It is a reminder to never, ever believe what other’s say about your child.

But, I wanted to read more and looked for books at the library. Imagine my surprise and shocked when the next several I read said that autism was caused by “refrigerator” moms. Basically, autism was caused by moms who didn’t connect with their child and the child felt they weren’t loved, so they pulled back into themselves.

Okay. So – I knew it couldn’t be true. In my mind, I did. I knew that I spent every day with Casey. I didn’t have to work, so it was Casey, me and Molly, our black lab together every day. We went everywhere together. I talked to her all day. I read books to her when she was too small to even hold her head up. I played peek a boo and we cuddled often.

But…. what about when I put her in a playpen so I could take a shower? She was in the living room, not in the bathroom with me. Maybe she thought I just left her to do something more fun? Sometimes, I let her sleep in the playpen for her afternoon nap instead of putting her in her bed. What if she only went to sleep because she was bored and lonely? What if she felt abandoned when she stayed with my parents? What if, even as I talked to her, I wasn’t really connecting to her? What if I really did cause her to withdraw from me?

Today, this all sounds completely unreasonable. But, at the time, I was a young, first time mom. No one I knew had a child with autism. Doctors had little experience with it. My friends thought maybe she was sick when I told them. And the books – they said I caused it. I grew up loving books – I read about anything I could get my hands on. What I read in reference books was the truth. And, according to the books, I was the cause. I didn’t love my little girl enough for her to want to talk to me or anyone else.

These were secrets thoughts. I didn’t talk to anyone about it – what if they agreed with the books and autism was my fault? No, it was bad enough to know it myself. I didn’t want anyone else to think the same. It was too terrible to think about.

Finally, I found new books. New research showed that it wasn’t bad mothers, but differences in the brain that caused it. Even after I read that in the first book, I wasn’t sure. If all the books I read were wrong, how could I be sure this one was right? Then I read more and finally, let the guilt go. I didn’t force Casey to withdraw from me. She knew I loved her, even if she couldn’t say it back.

I let go of even more of these crazy thoughts when Mandy never showed signs of autism. If it was me, she would have had autism, too. By the time Rob was diagnosed, I had read so much and talked to so many people that I knew it wasn’t me. It’s funny – way back then, I did hear a mom mentioned that she thought autism might have been her fault and I didn’t know what to say to her. Today, no one even thinks such a crazy thing. And that’s amazing! Finally, people are looking for ways to help, not someone to blame.

I’m sure someone could still stumble onto those old books somewhere. Thankfully, with the availability of the internet and thousands of other books, no parents will wonder if they caused their child’s autism again. It’s a thing of the past. Autism is difficult to understand and I don’t think they will ever find out the true cause. Personally, I think there are many factors – why else would this be such a spectrum disorder? I see many older adults that probably have autism on some level. Had they been children, now, they would receive a diagnosis. But when they were children, only the children with severe autism were diagnosed.

And I know it doesn’t really matter what caused autism in Casey and Rob. They are who they are. They are amazing, strong, kind young adults and isn’t that what we all want our children to grow up to be?

Happy Mother’s Day to all!

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You are an Amazing Autism Parent

You are an Amazing Autism Parent

That probably sounds like an odd title to a post, but I wanted you to know it. I have no idea what your life is like, but I know enough to know you are tired, stressed, maybe lonely, certainly worried and an amazing autism parent.

Like most people, last week was our first week back into our usual routine and it seemed like it was a month long. Rob was happy to be back to normal, Casey not so much. I went to wake her up one morning, and she said “no, snow day!” 🙂 As much as I wanted to crawl back in bed, too, I laughed and told her to get up. Not long after she got up, a memory popped up on Facebook reminding me that one year ago, we were all home because of a huge snow storm. How I wish I had her memory! (on a side note, it was almost 70 here yesterday!)

The first week back with a full moon and crazy weather at the end. Imagine my excitement! Casey wouldn’t sleep Monday, Rob was up and down all night Tuesday, she didn’t want to sleep Wednesday and he had a terrible time going to sleep Thursday. Yayyy full moon! Thank God, they both crashed Friday and slept last night, too, cause I was tired. Like crying over little things exhausted. (yep – crying meltdown yesterday morning – sorry, Dad!) So – there – for those who message me and tell me I have an easy life with autism… some days, yes, I do. Others, nope, not so much.

So this brings me to my point. I see you. I know you have days when you are crying in the shower (if you have time for a shower!) so no one knows, especially your child. Because you never want your child to think they are the reason for your tears. Or so no one knows that the “strong” person broke. I see you. I get it. I’ve cried in the shower more times than I hope to ever remember.

I know you are so tired that simple things like what to make for supper are more than you think you can handle. There were weeks when Saturday supper was frozen pizza for Rob and me and ravioli for Casey because I knew they would both eat and I didn’t have to think about it. Healthy? Nope… but, sometimes, you gotta do what you gotta do. They were happy and so was I. 🙂

I know that beyond not getting much sleep, you are tired of fighting for services for your child. You are tired of phone calls from the school. You are tired of therapies, doctors, insurance. You are tired of trying to figure out how to pay bills. You are tired of making the same food, washing the same clothes and watching the same TV shows or movies. You are just tired of it all.

But, here’s what else I know. You are doing an awesome job! You may not think it. You may not believe me. That’s okay. I know you are. I know that your child’s eyes light up when they see you. I know you wonder if your child loves you or even cares if you are around. Yes – they do. I promise you that. Your child may never say a word, but they love you. They need you – the imperfect, exhausted you. Just like you need them.

I know that you put yourself last. That all of your energy goes into taking care of your family and home before you think about yourself. I also know that you can’t do that very long. You have to think about yourself or you won’t be able to take care of them. Trust me – I know it’s hard to think of yourself, of spending time doing something just for you. But, if you don’t, you won’t be able to take care of them. I learned that the hard way – I speak from experience. 🙂

I know that you question every decision you make for your child. I know you are lonely and feel forgotten by friends, at times. I know your family may not be as supportive as you want. I know you may have had to limit the time your child spends with some family and that you hurt over that.

But really – for all of you that needs to hear this. You are an amazing autism parent! Every day, you get up and you do the very best you can for your child. You love that child more than you ever thought it was possible to love anyone. You brag about their little steps forward. You try every thing you hear about that may help your child. You do research better than a detective. You ask questions and reach out to other parents who may be able to help you. You are stronger than you think!

Always remember – from one autism parent to another – you are doing a wonderful job! You may not always believe it, but I have faith in you. Be as proud of yourself as you are of your child. Brag about yourself, too. You got this!

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The Adult with Autism

The Adult with Autism

I’ve seen many posts about the need for finding services for people with autism when they turn 18 and legally become adults. According to the law, they can then make their own decisions about everything. As parents of people with autism, we know better.

I often wonder if Casey and Rob are curious about why Mandy gets to drive and have her own house and they haven’t been able to do that. Or do they just assume that’s something other people do – and not something, that legally, they are allowed to do? Do they wonder why their friend Brandon is able to drive and they aren’t? Maybe they think Brandon’s mom is just cooler than me. Or do they know they aren’t able to do it safely?

But, really – how many of us stop and think about whether something we do is safe? And with them having no sense of danger, would that even be a thought to them? Do they want to drive? I’ll be honest – I’ve never asked. Maybe I’m afraid of the answer. Or maybe I’m afraid one of them will just decide to do it one day, since I asked if they wanted to. It’s just another thing I will probably never know.

I am their legal guardian. Neither of them are able to make financial (Rob still believes three quarters is the only money you need – and he rarely spends them. Casey says all money is “dollars” with little awareness of the difference in a $1 bill and a $20. She knows the numbers, but it doesn’t mean anything to her) or medical decisions. Rob is finally able to tell me when he needs to see Dr. Myers, but he wouldn’t understand if a serious medical issue happened. Casey hasn’t told me she needed to see the doctor, yet, but I’m sure she will sometime.

As for living somewhere other than with me, I did ask Casey once several years ago. I didn’t want her to move out, but I was curious about what she wanted. She told me she wanted to live somewhere else. I was shocked and ready to cry that she wanted to leave me – until she told me she was going to move to Grandma and Grandpa’s house with her Elmo and her cd player. Rob will never want to live anywhere else. His room is his safe place.

I do feel guilty sometimes, though. I try to let them make as many decisions as possible. What they want to eat – what they want to wear – where they want to go. But some decisions that most adults make, I still do for them. I tell them when it’s bath time. I take their iPads and tell them when it’s time to go to bed. I tell them when they have had enough to eat.

And the guilt comes. They are adults, after all. In my head, I know they need me to make those choices for them, but in my heart, I worry that I’m taking away the little bit of freedom they have. Eventually, I know they would both take baths and showers, as that is routine (I doubt either consider the reason to take baths beyond routine – hygiene wouldn’t be considered! 🙂 ). And I know she would eat until she got sick and that’s not healthy for her. He won’t eat as much as she does, but he will eat more than he should. I need to monitor their food to help them stay healthy.

I know – some adults don’t care about health and maybe they don’t. But, since they don’t understand how their future could be affected by what they do now, I have to do it. And honestly, some days I really don’t like it. I feel like the meanest mom in the world when I say no more cookies or juice. I feel guilty when I tell them to go to bed – yes, they need it, but I also need some time alone. Am I doing it for them or me? (Some nights, I’ll admit – it’s for me, not them! 🙂 )

I wonder what they think about always being with me or family. Or needing to stay with staff when they go places with their day hab. Do they want more freedom? Do they ever think about Mandy going places alone? Do they feel suffocated by always being with someone? Do they even understand the freedoms that other adults have? In some ways, I am a lucky parent.

Some of my friends with adult children with autism are struggling even more. Their children are more aware of their differences and they want to do the things their siblings and friends are doing. They want jobs, friends – to go places without mom and dad. It’s a whole new level of guilt for the parents. And I do thank God I don’t have to try and explain to Casey and Rob why they can’t do things like their friends. I am lucky.

We have the services they need and I didn’t have to fight with Social Security for years to get their benefits started. I feel for the parents who are fighting for services and feeling the guilt that I feel at times. I pray for the parents who have children who struggle more than mine do. Life isn’t easy at times, no matter where on the spectrum your child falls.

Adding to all of this is the realization that you are aging as your child does. What will happen when you are no longer able to care for them? I’ve decided that I’m going to live until I’m 125 so I never have to worry about them thinking I just got tired of them and left. That thought tears me up inside. I know they will have Mandy and Cory to look after them, but it’s still such a worry. I can’t stand the thought of them being alone or thinking I left. (is it sad that I worry less about the financial part?)

It’s funny. As I sit here writing with tears in my eyes from worry, Casey is laying on the couch giggling and whispering “Adam. Adam.” because today is Adam’s birthday party and she cannot wait to go! It’s so exciting – a birthday party at Pizza Hut! Her biggest concern today is whether there will be cake there. And I know I need to take a lesson from her. I need to stop overthinking things and just enjoy the magic that will always be in our home because they have autism.

We will have tough days, but … the magic! The excitement of going hiking with Tracie! The joy of Santa Claus! The happiness that Elmo can bring. The thrill of buying a huge box of crayons! Dollar store shopping trips and fries from McDonald’s. No worries about bills or perfect clothes. No drama. Just the simple magic that life brings them. Maybe learning from them should have been my New Year’s resolution.

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Autism and the Dumbest Things I’ve Ever Heard

Autism and the Dumbest Things I've Ever Heard

🙂 🙂 I bet that title caught your attention, didn’t it? Maybe it even made you think of some of the dumb things you have heard or been told by very “knowledgeable” people – you know – the person whose neighbor’s sister’s best friend knows someone who has a child with autism.

I shouldn’t be proud of the accomplishments that my kids make. Yep – I’ve actually heard that. I’ve even been told that wearing my “Proud Autism Mom” shirt is just my way of begging for pity. (No, I didn’t go to jail that day – I merely told her where she could put her opinion 🙂 ) Apparently, when Rob wears a new shirt or Casey doesn’t get upset at a schedule change, I shouldn’t be happy and proud because those are things I should expect from them. Well, DUH. How about all of the hard work that went into helping them cope with sensory issues?

People are always excited when their child says their first word. It doesn’t make any difference if that first word came at a year old or five years old. Brag about it! Be proud and ignore the small minded people who have no idea how hard you and your child have worked to reach that goal!

They will eat when they get hungry. HA HA HA HA HA…. I don’t even want to know how many times I’ve heard that and I just laugh. Yes, I’m sure Rob will eat, but I refuse to be the one who forces food on him just so he can gag and I can clean it up. He is more willing to try new foods now, but many times, he will gag on it. I don’t eat certain foods – why in the world would I make him eat something (and who in their right mind thinks you can force someone to eat???) that will make him sick. I am darn proud of his ability to try new foods now and I refuse to hide that pride in him. Making him sit at a table until he eats something he doesn’t like just means that he will still be sitting there a week later.

Rob wasn’t always as picky as he is now. When he was little, he ate lots of different things. I am not sure what changed but he began to refuse spaghetti and pizza, then other things. I wonder if maybe the tomato sauce upset his stomach once (and once is all it takes!) and he is worried about trying it again. I offer it to him every time we have spaghetti, but he just can’t do it. And it’s not a calm refusal – it’s almost a panicked one. He isn’t just saying no, he’s scared I will get it close to him. I doubt I will ever know why he was such a picky eater for so many years. He just knew some foods were “safe” to him and that’s why he stuck with.

If you had a better night routine, they would sleep all night. Yeah, and if I dig deep enough in my yard, I’ll strike oil. For years, Casey couldn’t go to sleep at night. Then she got her days and nights switched and I spent every day fighting to keep her awake so she would sleep at night (which rarely happened). She was wound for sound and I could barely keep my eyes open. It’s a miracle we all survived. Then, as she began to sleep, Rob stayed awake.

I think he had a nightmare and in his mind, if he slept in his room, it would happen again, so he slept on the floor in the girls’ room for years. It drove Mandy crazy at times, I know, but even when he started the night in his room, as soon as he could, he would sneak upstairs and crash beside Mandy’s bed. By that time, I was so tired, I didn’t care where he was as long as he was asleep.

He did finally decide to sleep in his room again, but he was up 7 – 8 times a night. Luckily, he never tried to leave the house. For the most part, he just laid on his bed and “sang” for hours. I am so thankful he sleeps now. We still have nights every once in a while that one or the other doesn’t sleep, but that’s okay. I can handle that.

This is also why we do NOT change our evening routine very much. I’ve also been told that if I would change it every night, they would learn to adjust and sleep no matter what. Yep – that may be true, but I am not willing to go back to being a sleepwalking zombie every day. Nope – ain’t gonna happen.

Those “sensory meltdowns” would disappear if you just discipline them. Yeah and if someone smacked me when I didn’t like a shirt, I would belt them back. Their sensory issues are real and they are painful. It took me a long time to understand this with Casey. Remember, when she was diagnosed, there was no information about sensory issues. It was all about communication and how she would never talk to me or love me. (proved them wrong, didn’t we?? 🙂 )

The guilt I feel for getting upset at her during her meltdowns when she was a child will never go away. I hate that I didn’t know – that I yelled at her and that I cried in front of her. I hate that I had to struggle with her because she would grab my hands and want me to beat her head with them. (She needed deep pressure and still does, at times, but she has learned to find it other ways.) I hate that I let other people get mad at her. It’s a wonder she doesn’t completely hate me now.

She was 8 or 9 (Rob would have been 4 – 5) before I heard much about sensory issues in people with autism. Once I read about it, I started watching her (and him – he wasn’t diagnosed, yet, but I had concerns) I had always known her hearing was super sensitive (we had AIT done with her when she was 5 and it helped tremendously!) but didn’t know that her other senses were just as messed up. But, that’s a subject for another week.

I should not buy them what they like for their birthdays. Yep – I’ve been told that. I should buy them phones, tablets, new clothes, tools, jewelry – things that adults like, not Sesame Street things or Legos. I am keeping them childlike instead of forcing them to grow up and out of the autism (HUHHH???) If I would treat them like adults, they would be more mature. Yeah…. sure….

I need to let go and let them be independent. Apparently, the reason neither of them has many fears of danger is because I haven’t let them be independent enough to get hurt. Now, that’s just a stupid idea. I should let them get hit by a car so they know cars are a danger? I should let them jump in deep water so they know they might drown? Enough said about that.

I could go on and on about the dumb things people have said to me. I’m sure sometimes, they were really trying to help. And I do appreciate new ideas from anyone – you never know when your next great idea will come from. However – I am not interested in being told how I’m doing it all wrong. Unless you are me or my kids, you have no clue what our lives are like. Even another autism family has no real clue, as every person with autism is so unique and different. I can try to imagine what Cherie or Lillie or Mary Jo or Sandy or Audrey or Staci or Katie live with, but I can’t really know – even though we are all good friends and have been for years.

By the way – I’d love to hear some of the dumb things you have heard. I’m always ready for a good laugh! 🙂 🙂

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Autism and Tips for Back to School

Autism and Tips for Back to School

This picture was the first day of school for Rob’s senior year. (I’ll admit – I got a little teary-eyed about no more first days of school!) But – I’m not gonna lie – I am so glad that my kids are done with school! I miss the teachers they had – and wish every child had amazing teachers like that, but I don’t miss the worry and the stress. I don’t miss buying hundreds of dollars of supplies and clothes. I don’t miss wondering if the other kids were mean to them. I think Rob, especially, likes his routine to stay the same. As much as he misses Mrs. Kaser (he still talks about ALL of the teachers and aides he had!), he likes knowing that his routine won’t change.

For those who are dreading back to school, I do have a few tips to help.

  1. Get to know your child’s teacher, aide and bus driver. Really – get to know all of the staff at your child’s school. Share your child’s favorite things and always, always be sure to tell the teachers what your child doesn’t like! It isn’t fair to them or your child for you to not share that. Let the teacher know you are always available to talk with him/her about issues that will come up. If you have concerns, share those, too. Only your child will suffer if you don’t keep the lines of communication open.
  2. If your child has a rough night, text the teacher and let her know that. She will know that that day may not be the best one to start new lessons – it might be best to just go with the flow that day and start fresh the next day.
  3. Always, always share anything that happens at home that may upset your child with the teacher! You may feel some things are private, but a death or divorce in the household will upset your child and the teacher needs to be aware of it.
  4. Share your best ideas with dealing with your child’s behaviors. If you know weighted vests help, tell the teacher. If your child needs ear protection for loud noises, tell the teacher. The more you share, the better your child’s school day will go! If your child insists on wearing the same shirts all the time, who cares? Share all of your child’s sensory needs with the staff at the school – and be sure the bus driver is aware of them, too! (I have no idea why bus drivers and cafeteria people are not always included in the loop – they are with your child every day, too!)
  5. If your child is little, you may want to talk to his/her class about autism before they go. You don’t need to share a lot of details, only that your child may not talk to them, but would love to have someone to play on the swings with or color a picture.
  6. If you have something to tell the teacher, send an email if it isn’t a pressing matter. Remember that every time you interrupt the teacher, that’s time you are taking away from your child and the other students. If your information can wait, send the email and be patient for a reply. While your focus is only on your child, the teacher is doing his/her best for many students and they want to do their best for each of them.
  7. If there is a problem, talk to the teacher. If you don’t get results, talk to the principal. It’s okay to be the parent the school is tired of dealing with. I’m quite sure my kids’ school district was as happy as I was when Rob graduated. I never meant to be a pain in the butt (well, okay… yeah… there were a few times, I meant to be – and I would do it all again! 🙂 ). Keep talking until you get help.
  8. If the problems are still not resolved, get your county or state board of developmental disabilities involved. And remember, nothing can be fixed as quickly as you want it to be. Be patient.
  9. Be nice until it’s time to not be nice. Nice will always get you farther – but some people need you to not be nice to get their undivided attention. I slapped my hand on the table in the middle of Casey’s IEP when she was little and demanded the district’s special education coordinator pay attention and quit playing with his pen and other folders. He never made the mistake of ignoring my kids again. 🙂 🙂 And we became friends!
  10. Try to relax. Your child will feel your anxiety and will react to it. (Yeah, learned this the hard way!) Assume the year will be awesome until you have to think it isn’t.

I hope each of your children has a wonderful first day back to school! Enjoy the peace and quiet. Rest if you can – do something you can’t do when they are there (sleep? read? shower?) and leave the laundry and housework. It will be there tomorrow.

Just like with doctors and therapists, remember that you are your child’s best advocate! You know your child better than anyone else! If you think something isn’t right – investigate. You can visit your child’s school anytime – drop in at an odd time and see what’s going on.

Good luck! And be sure to say “thank you” to your child’s teachers and other staff. Your appreciation will go a long way!