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The Adult with Autism

The Adult with Autism

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Autism and End of the Year Thoughts

Autism and End of Year Thoughts

Happy New Year! As Casey has been reminding me since Thursday, “Tuesday, December is all done.” Yes, Casey. “Wednesday is January” Yes, Casey. “Tuesday, 2019 is all done!” Yes, Casey. “Wednesday 2020” Yes, Casey. Over and over and over. 🙂 Is it just me or does 2020 seem like it should be a futuristic movie setting? It sure makes the 1999 seem like a million years ago. To me, anyway.

I hope each of you had a wonderful Christmas. Ours went as planned and expected which is always good. The only thing that was odd was the terrible fog we had on Christmas Eve. It lasted all day and through the night. Our drive to look at Christmas lights was severely shortened because we simply couldn’t see the lights on the houses (and honestly, it was terrible driving!). Casey seemed to be getting agitated after her bath, which is odd for her on Christmas Eve.

Until she was finally able to tell me it was foggy. I agreed but told her we were safe at home and so were Mandy and Cory. Then she mentioned Rudolph! I got it! I had to laugh and tell her I was sure that Rudolph would be able to help Santa that night – she didn’t need to worry. She giggled and went to bed. And went to bed again about 30 minutes later. And 45 minutes later. And 15 minutes later. Finally, at 12:30, I told her she had to stay in bed so I could go to bed and then Santa would come. I tucked her in, Santa came, and I heard her on the steps again.

I saw a light flash on, turn off and her running back to bed. I had to wake them both up at 9 the next morning to open their gifts. Apparently, she could only sleep once she knew he had actually made it! 🙂

Now that the excitement of Christmas is somewhat over, she is talking about New Year’s Eve. We are trying something different this year. Mandy and Cory are having a party at their house. This will be the first time Casey and Rob have ever gone anywhere on New Year’s Eve and I’m wondering how it will go. When we stay home, they take baths as usual, even with company here, eat snacks and go to bed. I think she stayed up one time, but they really could care less.

I’m going to make sure they have their bath/shower before we go to Mandy’s so they can just go to bed when we get home. I really, really doubt we stay until midnight, but you never know! They both constantly surprise me and this could be another of those times. Honestly, once Rob decides he is ready for sleep, that’s it. He may be sleeping at their house! 🙂

I just asked Casey what she would like to do in 2020. She wants to go to Walmart and McDonald’s (she got gifts cards for both for Christmas), go to the Cincinnati Zoo (and told me we went in June 1993 – which we did!) go to a hotel and go with Tracie. She doesn’t worry about losing weight, earning more, doing more…. blah blah. She is only concerned with fun things – and how I wish to be more like her!

I have things I want to accomplish in 2020. But when I looked at my list, I hadn’t written fun things. Who wants to accomplish only boring things? Where is the motivation? So I tossed my list away. I do want to write more, as that is fun to me. I am going to walk in the rain. I’m going to read more. I’m going to craft more and spend more time with my friends. I’m going to spend more time playing with Blue and laughing at the birds in my back yard.

Rob’s list is to go to Mandy and Cory’s house, go to Grandma and Grandpa’s house and go swimming with Tracie. Again, fun things. We all need to take a lesson from our kids.

I bet if you could ask your child with autism what they wanted, it wouldn’t be to lose weight or work more hours. It would be to enjoy the spinning lights of their favorite toy or to swing higher than anyone thinks is safe. It will be to stand under pouring water or sit by a waterfall. It would be to lay under heavy blankets and to squeeze play doh. It would be to throw away all of the “yucky” food and uncomfortable clothes. It would be to watch favorite movies and listen to favorite music.

We have so much stress in our lives that adding New Year’s resolutions is just crazy. For your resolutions, learn from your child. Choose fun over boring. Decide what would make you happy and go for that. Seriously, your life is stressful enough without adding more pressure to be perfect. Choose grace to be imperfect over the guilt of perfection.

You will never be stress free. Our lives are just simply different and everyone has a different kind of stress. Dealing with doctors, insurance, schools and therapist every day takes a huge toll on you. Trust me – been there, done that. Luckily, that’s not happening as much these days and I thank God for that.

So this year, resolve to do something for you! It doesn’t have to be a big thing – just something that makes you happy. A few minutes of happiness each day can change your whole attitude and we all need that.

Happy New Year from our circus to you. May you all have a safe and happy holiday!

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Merry Christmas from Our Autism Circus

Merry Christmas from our Autism Circus

Christmas is only a few days away and Casey and Rob are getting excited. She keeps peaking at gifts to see the ones with her name on them. He is building Christmas trees with his Legos.

We went to their Christmas dance a few days ago. Mandy and Cory are coming after lunch on Tuesday to open presents and they know where they want to look at lights that evening.

We’ve watched Rudolph, the Grinch, Frosty and Charlie Brown. They have laughed at Kevin in Home Alone.

Cookies are made. Candy is made. They are having a Christmas lunch at Hopewell Monday and Casey has a new Christmas shirt to wear.

We plan to relax through our holiday and not rush from place to place. Casey will do her usual poses for pictures. Rob will wish I would get the camera away from him. She will be serious all Christmas Day until her “list” is complete, then she will laugh and smile.

Our wish is for each of you to have an amazing, relaxing Christmas – one that is perfect for your family! Maybe that means chicken nuggets for supper or bags of pretzels for presents.

Please, don’t compare your holiday to anyone else’s! Every family has their own traditions and struggles – what might look perfect from the outside probably isn’t. You can’t know what stress other families are under.

Do what’s best for your child and stay away from negative people. Enjoy the smiles and love you see in your child’s eyes – even when you can’t hear them say it.

We are so blessed to have all of you with us on our journey with autism. Merry, merry Christmas from our circus to yours with love and blessings for peace and joy.

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Autism and Checking off the List

Autism and Checking off the List

Yesterday, I saw Casey’s “serious” holiday look. It happens when she starts thinking about her official list of what needs to be done for Christmas and other special days. She can get irritated if she feels I’m not following her list closely enough – or if I’m not doing things quick enough for her. Thank you, autism! 🙂

Luckily, the look went away quickly. I’m not sure what she was thinking about but she was giggling and happy within a few minutes, so I really didn’t care!

I took them shopping Thursday evening. As soon as we walked in the store, Casey took off for her first gifts. While I’m not going to tell what anything is, now, as some of the people she bought for read this blog (and one is writing it! lol – they always buy what they want to give me when I’m with them! 🙂 ). Anyway, I understood her reasoning for Grandma, but she had to tell me why she picked out Grandpa’s. Mandy’s is sparkly, mine is cute and Cory is a boy, so no sparkles. She picked out a squishy toy for Rob (they never pay any attention to what the other is doing) and when I asked why, she said because he squeezes. Yep – she’s right. 🙂

Rob waited patiently, but as soon as I asked what he wanted to get, he grabbed three of one thing (I knew these things had caught his eye as few weeks ago) – Grandma, Casey and me. Mandy got something different and he carefully picked out certain colors of another item for Cory and Grandpa. He was serious about those colors, too!

They got to wrap their presents yesterday and Casey is beyond happy that there are 3 presents under the tree for her, now. Rob never looked at the pile. He rarely does – it’s not time to open them. Even on Christmas Eve, he waits patiently for his gifts to be handed to him. Casey won’t touch the presents as long as she can read the name tags on each. And she carefully reads them over and over – just to be sure no new ones have been slipped under there while she isn’t looking! 🙂

I think we are coming close to checking off everything on her list. We are going to the Christmas dance Thursday evening – we’ve shopped and wrapped. We are making a craft later today with Mandy and baking cookies and candy next weekend. We’ve seen a drive thru light display. She mentioned going to the zoo and we have plans for that, but the day we planned on going is supposed to be bitterly cold, so that may change.

I wonder what is on holiday lists of other people with autism. I’m sure they each have their own ideas of what an “official” holiday looks like and what they would like as presents. I love the traditions that the kids look forward to each year – I just wish Casey wasn’t so strict with each of them. I wish she could relax and enjoy each a little more. I know she loves and enjoys each of our traditions, but she rarely smiles during any of them. I get the smiles after – when she is sure it happened exactly as she wanted it to.

Casey and Rob never spend much on their presents for others. Their reasoning may seem a little odd at first, but we can usually understand why after a few questions. They pick unique gifts and it’s obvious that they have thought about it. One year, Rob crawled around on the floor of the store until he found a bag of Funyuns for Grandpa. (I didn’t know my dad even liked them!) Casey likes to make gifts (No idea why she finally decided to buy her gifts this year!) but when she does buy them, she has a careful plan.

If you take your child shopping for gifts, you may not understand their reasons for purchasing a certain gift, but know that your child has perfect reasons – and you would probably get a laugh at the way they think and their choices. I know I’ve laughed at Casey and Rob’s reasoning before, but it does make perfect sense.

I hope each of you survived the full moon/Friday the 13th/2 weeks before Christmas storm. We did okay – they had trouble going to sleep a few nights, but nothing major. Thank God! The dread I felt when I saw the full moon and Friday the 13th … oh man – the dread. I know each of you understands exactly what I mean!

Remember to take care of you in the next few crazy weeks! Your child will feed off of your stress and you’ll be both be unhappy. Take time to breathe and read a Christmas book. Even if your child isn’t sitting still, they are listening. Read it for your enjoyment as much as theirs!

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Autism and Crazy Christmas Tension

Autism and Crazy, Christmas Tension

When Casey was little, December was never a good month for her. For years, she started acting out and having meltdowns near the first part of the month that lasted until Christmas. I could never understand – we stayed with our same routine. We didn’t go overboard with activities that she couldn’t handle (while all the time making sure Mandy got to do what she wanted during the holidays.) I love Christmas, but I dreaded the month for years.

She finally started relaxing, a little, in her mid teens, but she still has an exact list of what she wants to happen and she will remind me of that list often. When she was in her early 20’s, I finally learned why December was so hard for her all those years ago and it about broke my heart.

Santa. She was never sure she had been “good” enough for Santa to bring her presents. She knew her behaviors weren’t acceptable – she knew I was upset. She knew she shouldn’t scream and beat her head. And she knew Santa wouldn’t like it. So she worried that Santa wouldn’t bring her any presents because she was “bad.” (Let me say right now – I NEVER called her bad for her meltdowns!! I was stressed and I cried about it, but I never told her she was bad). I could still cry thinking about all those years that my sweet little girl worried about Santa not being happy with her – and not being able to tell anyone what was wrong, so she screamed. She ran from teachers. She beat her head on walls. The month seemed endless at times.

I only found out what had happened because of Casey’s incredible memory. We were reading a Christmas book one year and she said, “bad.” I told her she wasn’t bad. She looked deep in my eyes and said, “Screaming bad!” I told her that screaming hurt my ears and she needed to tell me what was wrong instead of scream. Still looking so serious, she said “Screaming bad, no Santa!” and I finally knew – ten years later why she had such a hard time in December.

Everyone, everywhere is telling kids to be good or Santa won’t come. Imagine how you would feel if you thought you were a bad kid – that your sister and brother were good, because they didn’t scream – and you couldn’t tell anyone that you were scared Santa wouldn’t like you? How sad. I still get choked up thinking about that. What could I have done differently? What could I have said that would have alleviated her fears? And why didn’t I know it then? (nothing like a nice load of mom guilt for the holidays, right? UGH!)

I’ve let go of the guilt now. I still wish I had known, but I can’t change it. Casey loves the entire holiday season now, so she wasn’t scarred for life over her misconceptions of Santa. But, still…. sometimes, autism sucks.

Casey is well into her list of needs for Christmas. She has reminded me about 100 times since noon yesterday that she wants to go see Christmas lights tomorrow. (WHY did I tell her I was thinking about going???) We had a long discussion about where we were going to go (It’s posted on our Facebook page) and what we would see. She is excited – another thing to be checked off her list of “must-do’s” for the season.

She watched me wrap a few presents earlier today. I asked if she was going to make her presents this year or buy them. “Make.” ok – what do you want to make? “Ornaments.” Ok – do you want to paint them or use foam pieces? “Paint.” Ok – I’ll get you some and you can make them. “Buy!” Yes, I will buy some. “NO! BUY!” You want to buy your presents? “Yes. Shopping.” OK – we’ll go shopping. “Paint?” Casey – are you going to buy or make your presents? “YES!” and she giggled and danced out of the room. I have no clue what she wants to do.

Meanwhile, Rob heard the conversation and said “Cory? Mandy?” Yes, Rob you can buy them presents. He laughed and went back to his iPad. He keeps life simple. He won’t remind me constantly that we haven’t shopped, yet. He’ll go whenever I’m ready. He’ll wrap when we have time. He may or may not tell people what he got them. 🙂 He’ll go see lights and the only thing he’ll remind me about is that he would like a snack from somewhere.

Casey is laying on the couch now, giggling about the Christmas dance next week. She looked at me and reminded me that she needed to wear her light up necklace and head band. And a Christmas shirt and Christmas socks. I told her I wouldn’t forget (like she would let me!) and she went back to her iPad. Another thing on her list that we have to do every year.

The holidays may be hard for your child, too. You may see more behaviors. You may hear more screams or less sleeping or their diet may change. While you are looking for possible reasons why, look outside the box – sometimes, way outside the box. Whatever is bothering your child may have nothing to do with Christmas at all. If I’ve learned nothing else from 30 years of living with autism it’s to expect the unexpected and to know that nothing is too far outside the box to be true.

I’ve tried some weird ideas to help the kids. Some worked, some didn’t. The point is – be open to trying the strangest things. If your child can’t tell you the problem, how can you possibly know the answer? Just like with Casey and Santa – I never guessed that was her problem. Don’t limit yourself – you never know what might work for your child!

Casey is back. She just reminded me that I told her we could do a Christmas craft today (and yeah – I completely forgot! 🙁 ) She also reminded me that we are going to see Christmas lights tomorrow and see more on Christmas Eve and that we are making cookies with Mandy on the 22nd. Oh – and the dance is the 19th. Time to distract her with pretty papers before she really gets going on her list of plans for the holidays!

Have a great week, everyone! Take time to breathe and enjoy the peace of the season!

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Autism and Colorful Traditions

Autism and Colorful Traditions

The house is decorated. A cookie baking day is planned. Most of the shopping is done and I’m in the process of making my Christmas cards. It’s time to sit back, relax and enjoy the pretty tree lights. And, time to think about how autism makes our Christmas different – and to celebrate those differences!

I saw pictures this morning of my cousin, Judy’s, house. It’s absolutely beautiful. Everything is coordinated and perfectly laid out. It’s the Christmas home of my dreams. I saw pictures that another friend had posted on Facebook of two beautiful trees. (By the way, I want to see both houses in person! So beautiful!)

I’m not saying our trees aren’t beautiful, because they are – to us. I decided this year to do both trees in the dining room bright colored and keep all the decorations in there the same. It mostly worked out that way – until Casey insisted that I change the table runner because she wanted our usual place mats. It’s not a big deal, but… It’s not what I wanted. 🙂

Casey and Rob like the house to be decorated the same every year. Some things can change, but others can’t. The picture with this post shows one thing that Rob insists on. Many, many years ago, he got this Teenage Mutant Ninja Turtle in a McDonald’s happy meal and decided that Baby Jesus needed a very special guard. Every year since then, there’s the turtle. This year, when I put the nativity out, I tucked the turtle in the stable (cause – hey – he’s still guarding the baby, right??). Yeah…. nope. As soon as Rob saw the nativity without the turtle, he started rocking and knocked poor Joseph over in his hurry to rescue the turtle and place him properly. And he checks every time he walks by to be sure I didn’t hide him again.

Casey has already started checking things off in her mind that have to be done as part of Christmas. She attended a performance of The Nutcracker yesterday with my mom and dad. My niece, Anna, was the Snow Queen (and other parts) and Casey said she was pretty and she danced fast. 🙂 And that she went to Steak and Shake for supper. We went to the Christmas parade and waved to Santa.

Casey will start reminding me she needs to go shopping and that we need to go somewhere to look at lights and we need to go to a dance and wrap presents and… The list goes on. Rob enjoys those things, too, but he takes it as it comes. He’s not pushy. 🙂

The tree in Casey’s room is all blue and purple ornaments, plus a few that she made or received (I have no idea what the criteria is for an ornament to be allowed on that tree – I tried to give her more and she strongly said NO!) Rob’s tree still has the unbreakable satin ornaments that he has used since he was a little boy. I found the cutest ornaments for him, but he refused them. Even his Wizard of Oz ornaments can’t be on that tree. (frankly, that little tree has seen better days, but when I brought a new tree in for him to use, he ran to the basement to get “his” tree.) It’s a sad little tree, but he is so happy with it! And that’s truly all that matters.

Our Christmas CDs are in the car (Toby Keith and Alabama are their preferred ones) and Casey will remind me when we leave later that it’s December and time for that music. (She has also reminded me 8 – 10 times that today is Tracie’s birthday! 🙂 ) She has Christmas sweatshirts ready to wear all month (but not on Christmas Day… she often has socks for a different holiday on that day, too! :0 ).

The presents they want from Santa are different than most people would imagine, but that’s okay. Santa knows what they really want. Please be careful when you talk about Santa around people with special needs. Casey is an adult, but she still believes in him. I am always very careful and if someone says something, I always make up a story so that belief isn’t ruined. Rob will talk about Santa, but he always has this look when he does. I’m not sure he believes, but he won’t ruin it for Casey. (We saw the Easter Bunny in the mall last spring. She ran up to him and swayed back and forth as she smiled. Rob looked at me and said “man” and grinned.)

Rob will find index cards and playing cards under the tree and a huge box of crayons. Casey will be the proud keeper of yet another Grover, Big Bird, Ernie and Bert. There won’t be any fancy gadgets or expensive clothes. There won’t be gift cards or jewelry. There will be coloring books, Legos, signs, Sesame Street DVDs and other toys. There won’t be many smiles, as both of them are very serious Christmas morning. The happy giggles come later and that’s okay, too. I know they are happy, even if they can’t tell me. Christmas magic is truly the best!

We may do Christmas differently, but that doesn’t change the love and magic of the season! We don’t go to a lot of parties. We don’t run ourselves ragged trying to do it all. We don’t spend more than we have to impress others. We spend lots of evenings in a dark living room with just the tree lights on and watching Christmas cartoons or movies. (Home Alone is their favorite!) We don’t overeat and we try to keep the same schedule as always. We all function better when our schedule stays close to usual. And we are happier with plenty of sleep! 🙂

Please, try to keep your routine as normal as possible. Your child (and you, I’m betting!) needs this. When you do attend an event, plan for what your child needs and don’t worry about what anyone else thinks. Start your own Christmas traditions and let go of what you imagine Christmas is supposed to look like. Decorate with Ninja Turtles and mixed up colors. Wear Halloween socks and Easter shirts (yep – that happened one year!). Include your child in whatever they are interested in but don’t take it personally if they don’t care about baking perfect cookies or wrapping the presents in matching paper.

Your child will enjoy Christmas on his or her own terms. You can’t make them enjoy the same things you do (do you enjoy everything everyone else does??). Let your child join in where they are comfortable and follow their lead for your traditions. You will all have a more relaxed and memorable Christmas!

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Autism and a Less Stressful, Fun Holiday Season

Autism and a Less Stressful, Fun Holiday Season

As I write this, Rob is repeating his “song” over and over. He has been at it for more than three hours so far with no end in sight. He didn’t feel well yesterday (he said his belly hurt, but also his throat 🙁 ) and I don’t know if he still doesn’t feel like himself or if he is just talking. I am fighting a cold and yesterday, Casey had a meltdown because she couldn’t find the shirt she wanted to wear. (She has decided that she will only wear a certain shirt on the weekends.) I’m feeling a little stressed without even thinking about the quickly approaching holidays.

I know you all feel it. The every day stress that comes from real life – without holidays! Illness, bills, jobs and the roller coaster of autism can cause anyone to want to scream, cry or just take a nap. (I’m feeling all three right now! 🙂 )

Here are my tips for a less stressful holiday. (You can do it! Honestly – I don’t stress about holidays – I love every minute. But – I have a very loving, close family and group of friends that love my kids just the way they are. It’s easier for me. 🙂 )

  1. Let go of the vision of a perfect holiday. A perfect holiday isn’t everyone sitting down at a table decorated with coordinating dinnerware and a perfectly cooked meal. It’s loud and loving and lots of laughing. Your perfect holiday won’t look like mine – and that’s great! My Thanksgiving will be a long walk in the morning, a long shower, a nap, reading and then supper with all of my kids, my brother and his family and my parents. (With a HUGE helping of my mom’s stuffing! 🙂 ) It will be Rob sitting at the island in their kitchen in “his” spot. Casey will sit in the dining room with the rest of us, but she won’t stay long. And that’s okay. They come and go as they need. Please, let your children do the same. Don’t let anyone tell you that they have to sit and visit with the group.
  2. Take food for your kids. If your child only eats certain foods, take it with you. Anyone who gets upset because you are doing this isn’t worth your time to explain sensory issues. Ignore them and enjoy your own meal. If it will be that big of a deal, host the party at your house where your child is happiest.
  3. Bring their comfort things. If your child needs headphones to block noise, bring them. If they need a comfort item, such as a blanket, bring it. You will have more fun if your child is relaxed. Again, ignore any comments.
  4. Make your own traditions. The traditions that we have won’t be like yours, but they make us happy. Do whatever makes your child/family happy. If you want to eat hamburgers and fries for a holiday dinner, do it. Make your own version of an Advent calendar. (We made paper chains and the kids got to rip off a link every day – it was a very visual reminder to when Santa was coming!) If skipping the huge meal on Thanksgiving would make your family happier, then skip it. Order a pizza and watch TV.
  5. Don’t stress about shopping! Don’t listen to the people who say your child is too “old” for toys or someone who says playing cards aren’t a real gift. Yes – they are, if that’s what the person loves. Casey and Rob are both getting toys and some odd gifts. I don’t care – they will be happy and excited on Christmas morning and I don’t have to stress over it.
  6. Rest!!! Yes – I said it. Stop trying to make your house picture perfect. Stop trying to wrap your gifts as if they were art projects. Stop making a million desserts that you don’t need. When your child sits down – you sit down, too. Sleep when your child does (and rest when they aren’t sleeping!) You can handle stress easier when you aren’t exhausted, too.
  7. Exercise! If you can’t get outside, make laps in your home. Anything to get you up and moving will help with stress. Dance around the kitchen while you cook. Whatever it takes to get moving. You will feel better.
  8. Avoid people who won’t accept your child. Yes – I said it and I mean it. If someone makes comments to you or your child or are just negative, stay away from them. You don’t owe anyone a visit or a meal. I don’t care if it is the holiday season – toxic people are not worth adding stress and pain to your life. Protect your child and yourself and stay away. It’s simply not worth it. Your most important job is to protect your child.

I’m sure some of you are thinking I make it sound too easy. I don’t mean that – it won’t be easy to avoid people or to deal with negative comments. You just have to think of your child and yourself first. Remember – those who judge don’t matter and those that matter don’t judge. (Thanks, Dr. Seuss! 🙂 )

I took the kids to the Christmas parade Friday night to officially start our holiday season. I was a little concerned about Rob as parades aren’t usually his thing, but he laughed and giggled through the whole thing. Casey was so excited to see Elmo, Cookie Monster and Santa – and he waved to her! She was bouncing in her seat! Happy holiday season to all! Eat, drink, rest and enjoy!

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Autism and the Non-Compliant Child

Autism and the Non-Compliant Child

I was asked a few days ago what I would do if teachers or staff tried to force Casey and Rob to always be compliant. Okay, first of all – who is going to force me to always do what others think I should? 🙂 But, seriously, it is an issue that is running rampant in schools and care facilities. What to do about the person who won’t do what staff wants them to do? And then, what to do with the staff that try to force compliance on a person? (apparently, my first thought of smacking them in the head is NOT a good option! 🙂 ).

I do understand the need for a certain amount of compliance, especially for safety reasons. Children need to learn the dangers of running off from their group (and this is a tough thing to teach children and adults with no sense of danger!) or how to play on playground equipment correctly (again, a tough thing to teach sensory seekers!). But, I do not believe that any program should be a “one size fits all” program. Every child, special needs or typical, is different and those differences need to be considered when working with the child.

When Casey was in preschool, she refused to keep her hand on the rail as the group walked down the hall. I think she simply saw no need for it, so she didn’t do it. As long as she stayed with the group, her teachers and the aide didn’t care. Other teachers, though, force children to keep that hand on the rail. Why? As long as the child is walking with the group – who cares? Will it matter tomorrow?

And besides, you have no idea why that child/person may be avoiding something. How do you know that the rail isn’t painful to them? That it may hurt their arm to walk like that? Unless that child is verbal and can tell you, you don’t know. Forcing that child to walk like everyone else is just a power trip for that teacher. Again, I mean when the child is willingly walking and staying with the group – who cares where their hand is?

Maybe the child is avoiding doing an art project because the scissors hurt their hand? Or maybe they are embarrassed because they can’t use the scissors as easily as their classmates? Maybe the glue makes them gag. Maybe they simply do not understand what is being asked of them. And when the child refuses to do the art project, they may be labelled non-compliant and the teacher becomes frustrated.

I get it – you have laid out this wonderful, fun project (to you, anyway) about Valentine’s Day and that child refuses to cut out a heart. What is wrong with the child? Don’t they know that mom will love their project? Don’t they care about mom? Seriously, folks, I’ve heard teachers make these comments. I do understand the teacher’s excitement, but what about the child?

Every time you have a child that refuses to do something, stop and ask yourself “Why?” and really think outside the box. Maybe the person is hungry, tired or sad. Maybe they are thinking about the dance they get to go to later that day or maybe they are thinking about Legos or pizza or coloring books. Maybe they are wondering where the teacher got those cool socks. Teachers and staff tend to take non-compliance personally and usually, it has nothing at all to do with them.

I once taught a little guy who has autism and ODD (oppositional defiant disorder). He would sign that he wanted to go outside, but if you said, “Ok, let’s go” he would refuse every time and I ended up standing in the hall while he sat. He went against everything that was said to him – even if it was something he wanted to do. It was his disorder. I soon learned if he wanted to go outside, not to say a word, but to go get my coat and he would happily follow, because it was his idea. I spent a lot of time sitting in the hallway while he hung upside down as he tried to decide whether he wanted to do what I suggested or not. (I have to say – even with all of that, he is one of those little ones that gets into your heart and never leaves. He always has a smile for me when I see him now and it’s been years since I taught him).

Consider that the person may have sensory issues you are not aware of. Sensory issues ARE real, not just a way to get out of doing things. They are painful and distracting and stressful. If you don’t believe me, think about being put in a small room, music is playing, a candle with a strong odor is burning, the lights are flickering, the heat is turned up, the clock is ticking loudly and you are being forced to wear clothes that are itchy. And – you are told that for lunch, you are being fed something that absolutely turns your stomach. And, someone comes in and says, “Read this story. Answer the questions. And sit still, no wiggling.” Let’s see how long you last. Don’t fool yourself – you will be a grouchy mess.

And that’s what some of our kids live with every – single – day. Teachers and staff need to understand that. They also need to know that people with autism can “read” others. They know who respects and cares for them and who is only there for the money. And they will respond to those that respect them in a completely different way. If the kids know someone doesn’t like them, why in the world would they want to anything for that person? I have learned that if Casey or Rob avoids someone, there is a good reason and I should avoid that person, too.

As I said, some compliance is necessary. I believe Casey and Rob should help clean up messes they make. They need to take their medications. (although, if someone refuses to take theirs, think about their reasons. Maybe they feel worse after taking it? Maybe they don’t trust the person giving it to them? Always, always, think outside the box!) It can be very hard to discover the reasons behind many behaviors, but it has to be done.

Often, a new set of eyes can help. When you are too close to a problem, it can seem insurmountable, but someone new might see something you haven’t noticed. I’m always open to people giving me their ideas. I know sometimes I get stuck and can’t get past my irritation at the behavior or the fact that I’m just too tired. Ask for help before you do something you will regret. If your frustration is too great, walk away from the situation! One wrong action could have devastating affects on the person you are working with.

There are some people who are simply not cut out to work with people with autism. They don’t have the right temperment or passion. They may think it will be easy and when it isn’t, they get angry and do things without thinking. I get that – I’ve done that. But – our kids need to be surrounded by people who love them – not bullies who will force them to do what they are told. Yes, I do think some teachers/staff can be bullies. It becomes “You WILL do what I say, no matter what.” It becomes a battle of wills and trust me when I say this – no one is better at winning a battle of wills than a person with autism. You will not win. And if you do, it’s only because the child became bored and gave up. But, if it is truly something that child doesn’t want to do – they won’t give up.

And then you need to ask yourself “Is this the hill I want to die on?” That question was used in military strategy sessions in regards to whether holding a certain position is truly worth it. Think about it. If winning this battle meant losing your self-respect, is it worth it? Nope. It isn’t. So when things become intense and you are thinking about forcing someone with autism to do what you want, stop and think…

Is this the hill I want to die on?

Will this matter tomorrow?

If either answer is no, then walk away. The person with autism didn’t “win.” You both did.

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Autism and Being Thankful

Autism and Being Thankful

Years ago, when I did the children’s chats at church every Sunday, I would always ask the kids what they are thankful for. The catch was – it had to be something others might think was silly, but that meant a lot to the kids. It was always interesting to hear what they had to say, but it was also a surprise at how hard it was to get them to open up about silly things they were thankful for. So this week, in the spirit of the season, I’m going to share a few things I’m thankful for this year.

  1. We all survived the time change. For anyone without a child with autism, that may seem silly, but oh my God. Time change week is never fun. The only good thing is that the change in the fall makes Casey and Rob want to go to bed earlier. But, not necessarily to sleep… they lay there and talk and sing and then when it is time to be quiet, they are too wound up to sleep. Time changes suck and I have decided to convince the Ohio legislature to do away with it (there has been a bill laying around for a few years) by taking Casey and Rob to every politician against doing away with it and say “Here ya go – enjoy time change week!” and leave them. The bill will be passed in a day or so! 🙂
  2. I got a list of “wants” from both kids this year! Last year was the first time Rob ever told me anything he would like to have from Santa. Signs, of course. For his birthday in August, he asked for certain colors of Legos. A few weeks ago, he said he wanted signs, but this morning, he added a railroad, Legos and crayons! Casey gave me her list weeks ago and it was basically the same one she has given Santa for years – only the colors of the shirts she wants change and the stuffed Sesame Street character. If you can’t get a list of ideas from your kids, please don’t think about their actual age – buy what they would like. Casey and Rob will get lots of things that are no where near age appropriate, but that will make them happy. And that’s your goal, right?
  3. While I will never get rich teaching preschool, I am thankful that I can work a few blocks from the kids’ day hab and that I am able to be home with them until they are picked up each morning. I’m also grateful that my co-workers are so understanding when I’m exhausted from too little sleep or frustrated about service issues. And if I need time off to deal with those problems, it’s not a big deal. Every time I think I need to look for another job, I think about those facts and know that I need to stay right where I am. 🙂
  4. Speaking of their day hab – I am so thankful they both love going there and that they are given so many opportunities to do things that they enjoy. I’ll admit, there have been bumps here and there, but right now, Casey and Rob are both happy to get on the shuttle in the mornings, so I know they are excited to be going. Casey can volunteer to her heart’s delight and Rob can join in whatever strikes his fancy that day. It wasn’t too long ago, he spent his days in his therapy swing, basically hiding from everyone. I am constantly reading stories of other families who are desperate to find somewhere for their adult child that will serve their needs. We have several options in our area, but many places have none – or waiting lists that are years long. For a small town, we do have a lot of day hab options.
  5. I am thankful that we all enjoy long hikes together. For many families, actually doing things as a family is difficult if not impossible. Casey and Rob both love hiking and it’s something we can all do together – not to mention the amazing exercise we get! It took years to get to this point. We are finally able to try new things and see how it goes. Last summer, we were able to get away a few days without Rob stressing the entire time.

All around us, we are hearing statements telling us to share what we are thankful for – things we are grateful for. It’s just that time of year. I urge you to look around you and find things to be thankful for, too. I know that in the midst of sensory meltdowns, fighting with insurance companies, little sleep and the stress from every day things, it’s hard to think of anything to be thankful for. But, every day, find something small. There were times I was thankful I could walk downstairs and get the laundry without a screaming meltdown because I disappeared.

I was thankful that neither of them tried to leave the house during the night. Neither played with knives, fire or cleaning products. As much as I got tired of their routines, at times, I was thankful for those same routines. Look around you – I’m sure there is something that you can smile about today. Maybe you got to go to the bathroom for a few seconds or got to have a cup of coffee while your child watched TV. Maybe your child didn’t cry at his new shirt or your daughter was able to give you a quick hug. Enjoy those times – relive those beautiful moments and say a quiet “thank you.”

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Autism and the Individual Service Plan

Autism and the Individual Service Plan

Last week, I met with Farrah, County Board of DD (their SSA) and Khisha, Hopewell, to plan the “outcomes” part of their annual ISP (Individual Service Plan). These plans are to make it possible for a complete stranger to come into our home, in the event of an emergency and know everything they need to take care of Casey and Rob. (Yeah – anyone else laughing? 🙂 ) It’s a great idea – and some of the info would be helpful, but unless you actually live here, a daily plan is nearly impossible to write. Farrah mentioned she would like to see it – so here we go!

A typical weekday morning – I am up first and shower (and lay out her hairbrush, toothbrush, toothpaste and deodorant) before I get Casey up. Before I go up to wake her, I set out her pills and juice by the refrigerator and either get out a yogurt or the toaster for waffles. If it is waffles day, her plate, butter, syrup and fork are all on the counter, too. Rob’s pills, koolaid and breakfast (three waffles and fruit, if it’s a waffle day – a pack of Brown sugar cinnamon pop tarts and fruit for other days) on the counter by the sink. And his deodorant. Many times, she is awake when I go upstairs, but some days, I need to encourage her to get out of bed. I also have to say “good morning” to whichever creature she slept with that night – right now, it’s “da biggest big bird” but that changes on a schedule I haven’t figured out, yet.

She runs down the steps, puts her clothes in the bathroom and gets her pills and juice. She reminds me if she needs a packed lunch that day. I pack lunches while she gets dressed and start her waffles when she leaves the bathroom. After she gets her shoes on, she goes into the dining room to get her three quarters for the day, then runs upstairs to get her coat and then I can brush her hair – never before she has her shoes on and her coat in hand. While she eats, I take Rob’s breakfast and pills to his room.

Like his mom, he prefers to be left alone until he is a little more awake, so he enjoys his breakfast in peace, then gets dressed (right now, he is only wearing red shirts!) and his shoes on. He grabs his coat as he leaves his room, throws his cup in the sink in the kitchen and checks the pantry for interesting snacks, if I forgot and left the door open. He grabs his quarters (that he never uses!) and sits in the recliner. She sits on the love seat and goes back to sleep while he insists on channel 10 on the TV (that he never watches) and checks his lunch box for the required items. (at this point, an orange, an apple, fruit snacks, pop and another fruit)

When the shuttle comes, they both run to the door and he starts “singing” as soon as he gets to the shuttle. (I’m sorry, driver – I have no idea why he’s doing it!)

Before they get home at 3, I put her pill, drink and a snack beside the refrigerator and his by the sink. She usually gets a cup of fruit or a yogurt. He wants three “big pretzels” (only the rods of a certain brand from one store in town!) but is okay if I am out of the pretzels to have cheese crackers (but again, only a certain brand!). When the shuttle drops them off, he starts “singing” as soon as his feet hit the ground. She runs through the house to put her shoes in the closet and then upstairs to hang up her coat. She may or may not come right back for her pills.

He empties his lunch box (with reminders!) grabs his iPad, pills, snack and juice and goes to his room. (If he runs right to his room, I know he has something he isn’t supposed to have – he thinks he is being so smart! HA!) He will sit in there for a few minutes before he comes back to say hi. She takes her pill and drink and sits on the love seat, then goes back for her snack. Then, she may lay down for a while with her iPad or go to her room and fold socks. She will also ask what is for supper and gets irritated if I don’t have an answer ready for her.

They both enjoy free time until supper. I make one plate, then the other and as they start to eat, I fix my own, then give one seconds, then the other (small amounts!) and finally sit down to a meal that I don’t even want anymore. If we are having something Rob doesn’t care for, he makes something for himself (frozen pizza rolls are his go-to thing right now – but only at home and only a certain brand!)

After supper, she goes out to the patio and sits on the swing, sometimes for an hour or more. Between 7:30-7:45, I tell her to start her bath water – she says “no” as she is getting up to do it. While her tub fills, I get out their pills and drinks again, then help her wash her hair and ask what she wants for a snack. It is waiting for her when she comes out of the bathroom. She eats and goes to her room. I tell Rob it’s shower time and start his water for him (he will burn himself) and help him wash his hair. (I also remind him he has more body parts than his face and under his arms! 🙂 )

I ask him what snack he wants, but he usually tells me before his shower. It’s waiting when he gets done and then he goes to his room, too. If his iPad happens to be dead, he might sit in the living room with me, but he only wants to watch ESPN – and it doesn’t matter what is on – that’s what he wants!

At 9:30, I take both iPads and tell them good night and that I love them. Do they go to sleep? Nope, but I need quiet time to chill out and this routine is helping Rob sleep better. I don’t want to change it too much for fear of what may happen! 🙂

Our schedule doesn’t really change on the weekends, except they sleep as long as they would like. Otherwise, pills are waiting, meals are the same, bath times are the same and bed time routine doesn’t change.

The funny thing is, when they sleep at my parents’ house, none of this matters to them. They keep basically the same schedule, but don’t get stressed if it isn’t exactly. And Rob will eat snacks there that he refuses here.

And during all of this, we have to always keep in mind the “rules” of our house. I wrote two blogs about them – for laughs, here they are – Autism and Our Very own Personal Rules to Live By and More Never to Be Forgotten Rules of our Autism House . The funny thing is, so many things in our lives have changed (and can change in an instant!) but these rules have applied for many years. Both of them have eased up a little in the rules, but not enough to say they aren’t rules anymore. Just more fun and excitement in our happy little circus!

Have a wonderful week! 🙂