Category: parenting and autism

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Autism and the Routines we Live With

Autism and the Routines we Live With

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

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

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

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

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

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

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

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

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

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

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

Autism is definitely never boring! 🙂

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Autism and Hope – Never Lose It!

Autism and Hope

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

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

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

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

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

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

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

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

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

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

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

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

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

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Autism, God and Faith

Autism, God and Faith

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

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

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

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

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

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

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

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

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

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

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

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

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

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Autism and 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 and a Birthday Week

Autism and a Birthday Week

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

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

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

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

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

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

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

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

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

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

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

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Autism – The Good, The Bad, The Ugly

Autism - The Good, The Bad, The Ugly

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

Hmmm…… what?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Autism and 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 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!