Tag: autism parenting

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Autism and the Routines we Live With

Autism and the Routines we Live With

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

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

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

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

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

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

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

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

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

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

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

Autism is definitely never boring! 🙂

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Autism and the “Wow” Day

Autism and the Wow Day

I’m sure all of you know that when you plan a day of activities, it rarely goes as planned. Especially with autism in the mix – sensory issues, anxiety and so many other things can cause a day to be “off.” Yesterday, we planned a day of shopping and with the weather changes coming our way, I knew Rob may have some issues with anxiety. (Not to mention that shopping really isn’t his favorite thing to do! 🙂 )

Casey had birthday money she wanted to spend and we hadn’t had a chance to get to the mall until yesterday. I had to make a few stops before we left town and they were both okay with that. Then I realized that when Casey asked about shopping, she meant a girls’ day – not really one that included the guys. Ooopss…. but she was okay with them going with us yesterday when I promised that Mandy and I would take her prom dress shopping without Rob soon. And she was so excited to be going to the mall!

We stopped at Hobby Lobby first and she immediately dropped to the floor in the Easter section to find just the right Easter coloring book. Rob waited patiently to go look at signs while she looked at every book. Then she giggled and grabbed a set of bunny ears on a head band. She really laughed when I told her it was her money – she could buy what she wanted so she grabbed a bag of Easter egg foamy stickers, too.

We stopped by the sign section on our way to the other coloring books and Rob picked out another sign for his room and another light switch plate. (He has 3 or 4 now, but won’t let me put those on the wall – they are to hold while he looks at his iPad and must be in a certain place on his dresser the rest of the time.) Rob happily looked at colored pencils and boxes of crayons while Casey was thrilled to discover a bigger selection of coloring books that usual.

She has to look through every single one. I’m still not sure what she is looking for – I thought it was color by number pages, but she put back books with those and kept looking. After several minutes, I told her she needed to find a book – we had more shopping to do and you just never know how long Rob will stand before he gets in to his anxiety song. She finally picked a color with water Sesame Street book.

While we were standing in the check out line, I asked Rob to push the cart back to the front of the store. This is a huge thing for him, as most of the time, he’ll do it, but he doesn’t really notice people around him and I’m worried he will run into someone. But not today – he watched the lady beside us and carefully pushed it back to the other carts and came back to me. A big step for us!

Casey picked what stores she wanted to go to in the mall while Rob just waited patiently for a snack. He sat and waited while she picked out a shirt for her talent show in a few weeks and carried the bags with their other purchases. They both walked by the play area without a second glance (a HUGE step for us!) and we had a snack – without rushing! Rob finished and just watched the people around us – he didn’t start singing or trying to leave. He just sat. I was SO proud of him!

As we walked down the mall, we found the Easter Bunny! Casey couldn’t stand still from excitement! She smiled and waved at the bunny while Rob just looked at him. The photographer asked if they wanted to come in and say hi to the bunny and Casey darted right in (I was a little afraid she would flop on his lap, but she just shook his hand and giggled!) but Rob held back. I told him he could go say hi if he wanted to. He walked over, shook the bunny’s hand and looked at me with a smirk on his face.

While Casey looked at socks (imagine that! 🙂 ) Rob said “mouth” and I turned to see what he was looking at. He was talking about the Easter Bunny – his mouth didn’t move when he talked. Rob knew it was a person in a costume and not a “real” bunny. But he also realized that Casey believed it was the “real” Easter Bunny and he wouldn’t do anything to ruin that for her! Again, I was so proud of him – that is a lot of thoughts to process! She told everything she saw the Easter Bunny, but he never mentioned it again.

When we were done shopping, she wanted to hold onto me. Rob was walking in front of us (I think he was done and making sure we were heading for the car! 🙂 ) and I told her she could walk with him. She stepped up to him and they grabbed hands. I love how they look out for each other when we go places! They held onto each other until we got to the car. (He always knows what door we came in and where the car is – very handy! 🙂 ) And it dispels the myth that people with autism don’t feel empathy – he knows she feels safer when she is holding someone and he never pulls away from her.

It was getting cloudy as we drove home (we live about 30 minutes from the mall) and I was waiting for Rob to start singing his storm song, but he never did. He held onto his bag with his sign in it and looked out the window all the way home. We even went for a long walk when we got home and he never sang his song!

Autism is just a part of us and if it had popped up during our day, we would have handled it like we usually do, but it was amazing to have a day of fun without really thinking about it. Sometimes, we just need a break from the stress of worrying about going new places or worrying about what might trigger sensory issues or anxiety. Yesterday was definitely a welcome break!

I hope each of you has a “welcome” break soon! Enjoy every minute of it!

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

Autism Awareness Month

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

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

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

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

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

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

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

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

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

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

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Autism – 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 Trust between Parents and Teachers

Autism and Trust between Parents and Teachers

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

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

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

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

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

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

That happened to Casey.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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 the Official Christmas List

Autism and the Official Christmas List

Casey is starting to get that look in her eyes. It’s only two days before Christmas and she’s starting to think about everything we have done – and what still needs to be done to make a “perfect” Christmas in her eyes.

We went to Oglebay to see lights. Check. (Actually, she just wants to go somewhere with a big light display – she doesn’t care where.) We went shopping and got her gifts. Check. We made some of her gifts. Check. We went to the Christmas dance. Check. We made cookies. Check. We wrapped her presents. Check.

And now she is listing what still needs to be done. We still have to open presents with Mandy and Cory tomorrow. We still have to drive around and see local light displays tomorrow night. (Christmas Eve.) We have to read “The Night Before Christmas.” They have to go to bed early so Santa can come. (She is still saying she’s getting up in the dark Tuesday, but she laughs when she says it! 🙂 ) They have to look in their stockings (and she has to do to “the pose” and get her picture taken with her stocking.) and open their presents from Santa.

Then it will be time for a nap before they go to Grandma’s for lunch with their dad. When they get home, time to relax and wait till it’s time to go to my family’s Christmas supper. And she has a list for there, too. First, we eat. Then presents. Then the official Richcreek family picture. Then sock game. Then other games. And until she has played at least one game of something, she is serious. I mean, hardly a smile, you can see the wheels in her mind turning serious.

And then…. she smiles. The list in her head is complete. She has seen and done everything she is supposed to for the perfect Christmas. She can finally smile and laugh. She will smile for more casual pictures with her cousins. She will giggle with happiness. She will have a hard time going to sleep Christmas night because she is happy.

And I wish it was that easy for everyone to have the perfect Christmas – whatever that may mean in your family. Rob will go wherever and do whatever he’s supposed to do, but he doesn’t take holidays as seriously as she does. He is happy to be with Mandy and Cory and the rest of the family. He is happy to open presents. And he is happy to hide in Uncle Jeff’s old bedroom when he needs some quiet time. He’ll go to sleep that night because the next day will be Hopewell and he’ll be ready to get back into his routine after being off four days.

The day after Christmas, Casey will start asking about New Year’s Eve. We never do anything too exciting, but she loves the routine. Snacks and party hats and noise makers. Maybe Grandma and Grandpa or Mandy and Cory coming over for a while. And usually, she wants her bath at the same time and heads for bed. She doesn’t care about the clock hitting midnight – only that we stick with the routine in her head. It’s pretty simple to make her happy.

Once in a while, I wish we could go to a big party on New Year’s Eve. But, really, I’m just as happy as she is that I can stay home in my comfy clothes. Rob won’t stay up. When he is ready for sleep, that’s it. He asks for party mix for a snack and will put a party hat on for a few seconds.

I hope each of you has the same perfect Christmas and New Year’s – one that is as unique and special as your autism family. Don’t compare your holiday season with anyone else’s – be different! Be safe, be happy, be blessed. Merry Christmas!