Category: autism parenting

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Autism – The Good, The Bad, The Ugly

Autism - The Good, The Bad, The Ugly

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

Hmmm…… what?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Autism and My Biggest Regret

Autism and My Biggest Regret

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

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

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

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

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

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

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

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

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

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

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

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

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

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An Autism Mom’s Happy Thoughts

An Autism Mom's Happy Thoughts

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

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

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

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

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

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

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

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

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

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

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


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Autism and Anxiety about the Future

Autism and Anxiety about the Future

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Autism and 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, OCD and the Can’t be Rushed Morning

Autism, OCD and the Can't be Rushed Morning

The kids and I have a routine for the mornings when we are all leaving the house about the same time. It works well for us and we have a little time to adjust, if necessary. But last Friday morning was one that about put this almost crazy autism mom over the edge.

Casey and Rob were going to spend the night with my parents that evening. Since they both “need” certain blankets to sleep with, I told Mom that I would bring their stuff out before I went to work that morning. The kids have been leaving in plenty of time for me to do that. Until….

I had a hard time getting up that morning, but I was still almost ready when I woke Casey up. She stumbled to the kitchen (she wakes up like I do – barely moving most days! 🙂 ) grabbed her pills and juice and wanted waffles for breakfast. Not a problem, but somehow, I had managed to not have our lunches packed (Blue took forever outside!) and I still needed to pack their clothes for Grandma and Grandpa’s house.

I’ve packed for them before and had to unpack and let them do it, so I told Casey to go get her clothes and the blanket and stuffed animal she wanted to take to Mom and Dad’s house. Somehow, this translated in her mind to lay back down on her bed. I’m trying to get lunches packed when I realize I hadn’t heard her in the bathroom. After several calls up the steps and a threat to go get her, she came down – without her stuff. So we went back up – together – to gather it all and get her packed.

She went into the bathroom as I went to get Rob up. He rolls over as soon as he hears me every morning and grabs his juice and pills. I handed him his breakfast and went to get his bag so he could pick what he wanted to take. Of course, I couldn’t find his bag – he decided it didn’t belong in his closet or the closet upstairs (but did he tell me? of course not!) I finally found it and started packing his blankets only to have him pull them back out because I packed the burgundy one first – and the brown was is supposed to go on the bottom.

So, I put the brown one in, the burgundy one and the blue one – only to be told I packed the wrong blue one – and he pulled everything out again, because he wanted the right blue one in on top of the brown one and under the burgundy.

I hate to admit it, but by now, I’m grinding my teeth. None of us are ready, they are packed, they haven’t had breakfast and their ride would be here in less than 10 minutes.

So we try again – and finally the blankets are properly packed. He needed to change his shirt before work (He has a few old shirts that I told him he could wear at home, but needed to be changed before work.) He was fine with changing his shirt, until I pulled out his coke shirt and he was wearing the official “wear only with the coke shirt” pants. So he yanked off the shirt he was wearing and put the coke shirt on, but then realized he wanted to wear the coke shirt at Grandma and Grandpa’s house, so he completely stripped, stuffed those clothes in his bag and pulled another pair of pants and shirt out of his drawer. And I hear the minutes ticking by.

I knew then I was never going to be able to leave when they did.

Casey came to me for help in brushing her hair and decided she had the wrong socks on to wear with her boots. (I have no idea why!) So she disappeared upstairs to find the right socks, while Rob is stuffing his feet into snow boots because Casey is wearing boots. Then she came down in tennis shoes, so he ran back to his room to put tennis shoes on. And I’m sweating and ready to start swearing under my breath.

She finally sat down to eat her waffles. He turned the TV on and immediately started singing his storm song. Over and over again. She stopped eating to watch him. He quieted a little, she finished eating and went to get her coat. She had her red coat on, but wanted a scarf. I told her to get the scarf Mandy made her. No. That scarf can only be worn with the Elmo hat Mandy made. So wear that hat. No. That hat has to be worn with her black coat. (By now, I am so ready to start cussing – you can’t even imagine.) So wear the black coat. No, it’s Friday. (AHHHHHH!)

I took a deep breath and said go get a scarf. No. Fine, then don’t wear one. She stomped to the couch and flopped down. I got her one of my scarves, but you can imagine how that went over. She started getting upset as I can’t find another scarf that will make her happy. Rob got louder and Blue started barking. I still am not ready for work, nor do I have my lunch packed or Blue fed. And I’m so stressed by then, I can’t even think what I need to do first so I can get out of the house on time.

Casey was still asking for a scarf. Finally, I understood she wanted a new one, but that she also wanted a new hat and gloves, too, because you simply cannot wear an old hat or gloves with a new scarf. I’m done. By then, I didn’t care if I ever saw another scarf.

Their shuttle came around the corner and Rob suddenly remembered he needed his headphones for his iPad. I told him I would get them, but of course, I grabbed the wrong pair (how was I supposed to know there is a certain pair for Fridays at work??) Casey was walking out the door when she decided she packed the wrong slippers for Grandma and Grandpa’s house. I asked which ones she wanted and told her I would get them after she left. She stopped on the porch as if she was deciding whether I could handle such an important task, but finally, they were both on the shuttle and I could close the door.

I thanked God that most days aren’t like that one. Truly, had I not needed to take their stuff to my parent’s house, it wouldn’t have been any big deal. And I knew mom and dad would meet me in town to get it, but I was in a rush by then and wasn’t thinking about that. I had too much on my mind last week and not enough sense to calm down and forget the other stuff for a few minutes.

Luckily, when one of the kids has a morning like this, the other doesn’t pay any attention. It was just dumb luck (and the weather change, I’m sure) that they both had OCD issues the same morning. I’m just glad it’s over (and that I made it to school – with about 30 seconds to spare! 🙂 ) and I’m hoping not to have another morning like that for a long time!

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Autism and the Freedom to be a Perfect You

Autism and the Freedom to be a Perfect You

So many times, it seems parents are looking for a “cure” for their child’s autism. Or parents are crying about how terrible their lives are with a special needs child. I’m not in any way denying life with autism is difficult at times, but typical kids can be rough to raise, too! It’s all in your perspective – whether you are a glass half- full or half-empty, I guess. To me, life can always get worse.

On bad days, I try to keep telling myself that things are not as bad as they are for some families. My kids can do a lot of personal care themselves. They are sleeping (right now, anyway!) and eating a lot of different things (though Mr. Picky stills pops up once in a while! 🙂 ). His anxiety levels are under control and her meltdowns have mostly disappeared. Yes, I get tired at times and I get frustrated that we can’t just go places without a lot of planning. But, I wouldn’t change Casey and Rob. Their autism is part of them – just like their eye and hair color.

I do understand parents who wish there was a cure. I just don’t agree with them. I know they are tired – are frustrated – are angry at the world. I get it. I’ve been there. When there were issues at school, I just knew we weren’t going to make it through without my having a breakdown or exploding. I also know that if Casey and Rob didn’t have autism, they wouldn’t be the awesome, amazing, wonderful people they are. And I wouldn’t be the person I am.

Maybe, if they didn’t have autism, they wouldn’t have their artistic abilities. Maybe Casey wouldn’t have her beautiful singing voice – or if she did, she would be afraid to use it. Maybe they would find jobs that they didn’t like. Maybe they would fall in with the wrong crowd. Maybe we wouldn’t be as close as a family. Maybe they would find jobs they aren’t happy with. Maybe… Maybe… Maybe…. Maybe their autism is the reason they are happy. How can I wish to change that? Isn’t that every parents’ biggest wish for their children? To be healthy and happy?

It’s hard to watch your child struggle with difficult things – whether it’s playing sports or learning to wear new clothes, trying to talk or trying to learn long division. Having your child “cured” of autism won’t change that. They will always have obstacles that you will want to help them over – and that you will cry as you watch them struggle. Autism isn’t causing that – life is.

As we walked with Mom today, Casey and Rob got farther and farther ahead of us. Rob knows the path and off he goes. At every turn on the path, he turns to make sure we are still coming. He may be independent, but he still needs reassurance. Casey stays between us – he won’t let her get in front of him. They wander around the park together and I follow behind, thinking about how a few short years ago, I would have never let them get that far from me – for their safety and my sanity.

I had to learn to let them be free – to grow into the amazing young man and woman they have become. If I stayed too close, they would have leaned too much on me and not become who they are meant to be. Giving them freedom is so hard! (I think it’s hard for most parents!) They had to learn to take care of themselves in some situations and learn to ask for help in others. If I kept them too close, they wouldn’t learn that.

When we go walking, I let them wander a little. (Not too far, though – their safety is always more important than their freedom!) I let them try anything they want to and offer whatever supports they may need. You need to let your child try new things, too. You never know what hidden talents they may have!

I want all of my kids to have the freedom to be whoever they want to be. Autism or not, everyone deserves that. Just because they have autism doesn’t mean they don’t have their own dreams and wants. Those dreams may not be the same as people without autism, but maybe they are. You won’t know until you let your child try – until you decide that you have an amazing child who happens to have autism. You won’t be able to change that fact and the sooner you accept autism, the happier you and your child will be.

Cry if you need to (I sure do at times!) then think about how amazing your child is and learn to give them the freedom to be the perfect version of themselves!

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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.

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Autism and the Excitement of Christmas

Autism and the Excitement of Christmas

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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