As many years as autism has been in my life, you would think I would be used to tough questions. To reports that show that how much Casey and Rob are affected by their autism. And mostly, I am.
When I got the mail this morning, these letters arrived. Statements of Expert Evaluations. One for each. And I felt a kick in the gut.
It’s silly. I knew the forms were coming. We are having Mandy named as co-guardian for Casey and Rob and had to have these forms filled out for the probate court. I’ve been their guardian since each turned 18, so the court is aware of them, but it had to be done. No big deal.
Except, today, for some reason, I cried about it. I live with them. I am well aware of what they can and can’t do. But seeing it on paper is hard. I can even laugh at myself now, but an hour ago, those papers were heartbreaking.
So here’s my advice. Cry if you want to. It won’t change anything, but it’ll help you feel better. The tough questions and decisions will never end as long as autism is part of your life.
Cry if you need to.
It won’t change your love and devotion to your child. It just shows again how much you love them and how you wish the world knew just how amazing they are.
Cry and move on. Remember, those forms don’t change anything.
I will always have the most amazing, most awesome kids. Autism and tough forms to fill out will never change that.
If you want to read more about our adventures with autism, please check out our book – Autism, Apples & Kool-Aid.
Teaching Casey and Rob the value of money has always been a struggle. They can both name all of the coins and can look at bills and say read the number on them, but understanding the value has always been hard for them. It’s hard for many people, not just those with autism. I remember Mandy telling me when she was 4 or 5 to “just use a credit card, Mommy” when I told her I didn’t have the extra money to go to McDonald’s like she wanted.
Every time we go to a store, I remind them how much money they have to spend. And, usually, it’s not an issue, but Rob struggles more with wanting more expensive items. He likes the big train sets and big boxes of Legos and can’t understand why he can’t have them every time he wants one. Casey tends to look for smaller items – socks, coloring books, etc.
Yesterday was a good example of a learning experience for Rob. They each had $50 to spend on our shopping trip. We went to Hobby Lobby and they both got everything they wanted – pipe cleaners, construction paper, coloring books and crafts kits. Both of them had plenty of money to go to another store. The problem came when Rob spotted Uno cards and wanted six packs – at $6.50 each. I reminded him he didn’t have enough money, but he could get two packs.
But – if he only got two packs, it left the stacks of cards in the stores with uneven numbers (a new thing of his OCD – all stacks in the stores must be equal and if they aren’t, he insists on buying the “extra” ones so the piles are even!) so he put them all back and grabbed a pack of stretchy tubes. All was fine until we walked a little farther and he saw a train set – and he wanted it. He ran to put back the tubes and grabbed the train set. It was $55. I reminded him he didn’t have enough money and that he needed to put it back.
For someone who says very little, he got his point across – he wanted the set and he was going to get it. So I had to keep reminding him he didn’t have enough money and he had to put it back. He even tried to put it in Mandy’s cart to convince her to buy it for him. She said no and for him to put it back. He finally did, went back and got his tubes and started walking again – only to spot a box with loose train cars. He grabbed the whole box (they were $5 each and there were probably 10 or 12 in the box) and put his tubes back.
He was very determined to get these. I told him he had money to get three of them, but not the whole box. He tried to intimidate me (HA!) by rocking and humming. He was anxious and he wanted those cars. I told him he could get three or zero. Those were his choices. He was not pleased. After a few minutes (I really think he was hoping Mandy would buy them for him!), he put them back on the shelf and grabbed his tubes.
Then he saw a small box of Legos. I told him he had the money to get those so he grabbed the box. But as we were walking he spotted another pack of Uno cards and grabbed those (These were special edition ones that were $12) So we had to talk again about how much money he had and what his choices were. After putting the Legos back and grabbing the cards, then deciding he wanted the Legos and not the cards, we finally made it to the front of the store where he wanted a pack of construction paper.
He had the money, so I told him to get a pack, but then he realized that if he took one pack, the stacks wouldn’t be even so he put it back and straightened the piles up. We finally made it to the checkout only to have Casey dart away to check another spot for coloring books.
I’ll be honest. I felt terrible about Rob not getting the train he wanted so badly. Part of me wanted to give in and tell him I would buy it for him. A big part wanted to do that, but – another part was saying he needs to learn that we don’t always get what we want. That sometimes, you just don’t have the money or it might rain and cancel plans or you might be having sloppy joes for supper instead of tacos.
It’s a hard, hard lesson for all of us to learn. Autism or not, we want what we want when we want it. Casey used to throw herself to the floor kicking and screaming if she didn’t get what she wanted. While Rob has never done that, sometimes his disappointment is even harder to handle.
But – it’s my job as mom to teach them about money. They may never be able to handle their own money, but they are capable of understanding they can’t always get what they want. It’s my job, autism or not, to help them understand life isn’t always perfect. And, let me tell you – that lesson sucks. I want to give all of my kids everything they want. It’s a huge struggle for me to not spoil them all.
So – we’ll keep talking about money and we’ll keep talking about what we can and can’t buy. And I’ll keep telling them both how proud I am of their choices and that I know it’s hard to choose when you want lots of things. That’s all any of us can do.
I haven’t shared this, yet, but a month ago, we had a perfect little miracle join our family. We lost Raylan a year ago and on his birthday, his miracle baby sister was born. To say we feel blessed is an understatement. It was an instant love for all of us. Words can’t describe the joy little Rosie has brought to us. And she showed again the big differences in the way Casey and Rob feel about things. For anyone who still believes those with autism don’t show feelings, they need to watch Casey and Rob with the baby.
For months, Casey talked about Rosie. She wanted to shop for her. She wanted to plan the baby shower. She wanted a new dress for the shower and simply couldn’t wait. We did have a few bumps when I realized that she thought Rosie was actually my mom (her name is Rose) and she didn’t understand why we were buying Grandma baby things, but she went along with it because… well – it’s shopping! 🙂
Rob never mentioned the baby. He firmly said no to the baby shower. He didn’t get excited. He didn’t ask questions. He didn’t worry that we were calling anyone Rosie. He just went along with everything with his usual laid back attitude.
But then…. Rosie was born.
And Uncle Rob cannot get enough of her. When I took them to meet Rosie for the first time, Rob couldn’t stop grinning and giggling all the way to Mandy and Cory’s house. “Rosie. Rosie. Rosie.” He looked at her and grinned. Casey was rocking back and forth with a huge grin on her face as she watched us with the baby. She couldn’t wait to hold her. She was a little nervous, but so happy. Until… she touched Rosie’s cheek and hands – and Rosie moved her arm. Casey jumped and was done holding her. It was too funny – Rosie’s little movement scared Casey. I don’t know why – maybe she thought since she was so little, she was a doll.
Rob wanted a turn, too. Only – he didn’t want to give her up. He pulled her right to him and carefully touched her cheeks and her hands. I asked if he was done and he said no. He just studied her and held her close.
The second time they met, Rob was ready. He cuddled her close again and her movements fascinated him. But the best part – he leaned down and carefully kissed her cheek. Mandy and I were both close to tears to see that. His eyes were twinkling and he had the cutest grin on his face. He is so in love with that little girl. Casey held her again – but only to get a picture taken and then she was done. Now that the party and shopping are over, she isn’t all that interested right now. And she insists on calling her Rosalyn, not Rosie.
I still hear others say people with autism are unable to show emotions or form close attachments. I’ve yet to meet someone who was unable to find humor or show love or compassion. Maybe it looks a little different than what we expect. Maybe they can’t say the words, but their eyes will show their feelings, whether it’s love or humor or sadness or anger. Learn to read eyes and you will find the way to someone’s true feelings. Let go of the expectations you might have of how someone shows love and meet them at their level.
Autism may prevent Rob and Casey from saying “Love you” to little Rosie, but their shining eyes and huge smiles are proof that she is a well loved niece already.
I’m not telling any of you anything you don’t know. Autism is lonely at times. Lots of times. Not just for the parent who may feel no one can really understand what their life is like, but also as a family. While others may be talking about their wonderful vacations, autism families may just be hoping for a night of sleep or being able to eat out as a family. Some days, autism is just tough.
I remember the isolation. I was so happy for my friends when they got to take their kids places, but …. I’ll admit…. I was jealous at times. And I hated that Mandy was missing out on those same things. They never stayed in a hotel until they were 6, 7 and 10. It simply wasn’t possible. Rob and Casey were unable to sleep at home, let alone a strange place. And their noises were impossible to quiet. It was safer to stay home.
In 2002, we took them to the Smoky Mountains and to the beach in North Carolina. By then, their behaviors were calmer and they were both less likely to dart away. We didn’t stay away from home long, but it was an amazing trip for all of us. We even went back to the Smoky Mountains a few years later. (While they love the beach, the mountains are even more calming to Casey and Rob).
But, in our every day lives, we were isolated. We didn’t go to movies. We didn’t go out to eat very often – and never somewhere that would take long to get our food. When the kids were older, we added a backyard pool and always had friends over. Those were the best times! I still felt lonely, at times, though. It’s hard to describe what our lives were like to others. And, honestly, I didn’t want to try. Back then, I was embarrassed by some parts of autism. Now, I just don’t care. If someone doesn’t like us, they are welcome to stay away. 🙂
The loneliness is a big reason I would encourage each of you to find a support group. I helped organize one in our area many years ago and stopped going for a long time. Last year, we started another one and it’s growing. It feels so good for even experienced parents like me to be around other parents – both experienced and new – and just know that I’m not alone in this walk with autism.
It helps to hear others’ ideas for things to try with Casey and Rob. Sometimes, you can’t see new ideas because you are too close. Outsiders can think more clearly about the situation.
The best part, though, is we plan activities for special needs families. We had a race car visit us and a fire truck came another night. Today, we had a trunk and treat for special needs families. To let Casey and Rob walk around and be themselves is just the most amazing feeling! Everyone knows them and everyone keeps an eye on each other. It’s a wonderful feeling to be part of a huge group that loves and accepts Casey and Rob just as they are.
If there isn’t an autism support group in your area, start one. You can advertise on Facebook or in school newsletters. You may not have a huge turnout, at first, but keep trying. Even if you just become friends with one other autism parent, that’s one more friend for you. The main goal for our group is that no one feels lonely and it’s a goal that we take very seriously. Find a group. Find support. You will all be better off for it.
Several weeks ago, I was asked why I chose to be Casey and Rob’s guardian and what exactly that meant for them. I meant to write this that week, but… I forgot. So, here goes.
Please remember that every state (and sometimes, every county) has different laws about guardianship. Do not take our path as the legal answers you want – you need to talk to a lawyer in your area who specializes in family law. It may be hard to find one, but this is not a decision you want to make lightly. Spend time finding the best lawyer for your needs.
A guardian is someone who is approved by the court to make medical and financial decisions for someone with a disability (or an elderly person who may need help). That’s the simple definition. You can be a guardian for the person (medical), the estate (financial) or both. I am both for Casey and Rob. There has never been a doubt that they would both need a guardian when they reached 18, as neither of them understands money enough to make decisions, nor can they make health decisions.
Remember – when your child reaches 18 (or graduates – it’s different everywhere, so be sure to find out the law in your state) you can no longer make any decisions for them. You can’t legally call your child’s doctor and ask a question. You can’t ask a pharmacist about your child’s medications. You can’t talk to their health insurance company. You can’t talk to Social Security, a bank. You might as well be a stranger trying to get information.
Now here’s the tricky part – trying to decide if your child needs a guardian. For some, they may only need a guardian to help them make medical decisions – when to go to doctor, what medicines to take, etc. For others, they may need a financial guardianship to protect their assets and pay bills on time.
It’s sad to say, but thousands of people with disabilities have been scammed because they had control over their money. They may be tricked into signing documents giving away property or money.
Deciding to be your child’s guardian can be a tough choice. As a parent, you want to give them all the freedom of being an adult, but you also want them to be safe. It’s truly a fine line for some parents to walk. I’ll admit – it’s easier for me, as Casey and Rob don’t seem to wonder why Mandy got to do things that they never did.
They look at home as their safe place and to me for their needs. They have only been able to tell me they need a doctor in the last few years and don’t know their medications or why they take them. (They do both know the medications make them feel better, tho.)
They understand the idea of money – that they need it to buy what they want. Rob seems a little more aware of the values on dollar bills than Casey, but he doesn’t care. He just wants to buy his cards or his snack mix.
The hard part of guardianship is that, even though you can make medical and financial decisions, you can’t make personal choices for them. I can’t tell Casey and Rob they aren’t allowed to smoke or drink or steal. I can advise them not to, but I can’t forbid it. That goes against their rights.
I can’t tell them to stop eating junk food or to go to bed or what to buy or who to be friends with. Those are parental decisions – and you are a guardian. Confusing? Yes.
If you decide to become a guardian, visit the probate court in your county and get their advice. Remember, laws are different every where. I used the same lawyer for both Casey and Rob.
For Casey, I had to have a background check and be bonded (insurance so if I decided to run away with all of her money, she could get it back). She had to go to court with me and meet the judge. I then had to keep a list of what she spent her money on and send it to the court at the end of the year.
Things were different for Rob. We had a different judge. Someone from the court met with Rob for an interview so he wouldn’t have to go to court. (The interview went something like this “hi Rob, can I ask you a few questions?” His response? “No thanks” as he left the room. 😊)
This judge also redid Casey’s file so I didn’t have to be bonded anymore or keep track of her money. (I do still keep records, just in case, but I’m not as paranoid about it.) Each December, I have to file a guardian’s report with the court and I gave to take a three hour continuing ed course every summer.
Guardianship is tricky, but very necessary at times. You are the best judge of what your child needs, but you may have to prove guardianship is needed to your county probate court. It’s not an easy decision to make.
When you have a child with autism, life skills need to be high on the list for what needs to be taught. I’m not saying that typical school subjects aren’t important, but life skills will help your child gain a little independence – even if they always live with you.
I’ll admit – while Casey and Rob do have chores to take care of, I haven’t always pushed them to do more. When I’m tired, I just want things done – not take the time to show them how to do something. I try to remember, tho.
Over the last few days, I’ve been reminded how much Rob loves to help me. And that Casey will usually say “no” as she’s getting up to do whatever I asked. After several months of dealing with a foot injury, I ended up in a hard cast and am supposed to stay off my foot as much as possible.
Luckily, I’m able to put weight on it for a few steps here and there, so I’m not completely helpless and I have a knee scooter to get around the house with. But, doing some things are a little tricky.
So I’ve asked Casey and Rob to help. He filled Blue’s water dish. She got the crock pot for me. He poured drinks for lunch. She folded laundry. They both packed their own lunches yesterday.
Are these huge things? Maybe not, but it shows again how important it is for our kids to understand they are part of the family and need to help when they can. Casey laughed about getting the crock pot and he was so proud he carried a bowl of water without spilling it. So, yes – these things are huge!
When there are so many other things your child with autism needs to learn, I understand that life skills are just a bother. But – imagine how much easier their life will be if they can brush their own teeth – wash their hair – choose their outfits. (I’ll be the first to say Casey sometimes chooses … How do I say this… Loud outfits, but she’s happy and excited, so who cares??)
Having autism is not an excuse to do nothing for yourself. Let your kids learn that – autism is not a free pass. Having said that, obviously, there are better times than others to work on life skills. If your child’s anxiety is high, you’ll make it worse forcing them to perfectly brush their teeth. But, teach them!
People with autism are capable of so many things, but they have to be given the chance to try. Will they succeed the first time? Probably not… But do you? How many things did you have to try over and over before you got it? Why should your child be any different? Again – autism is not an excuse!
Rob likes to help with cooking and to clean mirrors/windows. Are they always streak-free? Nope, but they aren’t always perfect when I do them, either. He likes to flip pancakes. Sometimes they land where he doesn’t want them to. So we try again.
Casey always folds her clothes and has to be reminded to fold others, but she will. She will help with cooking as long as it’s not near the stove – she is very worried about getting burned.
I’m sure in the next few months, they will continue to surprise me with what they can do. And what they are proud to do to help me. Let your children help you before you need the help. Give them the chance to be proud of what they can do. It’s the best of both worlds!
So, last week, I shared with you the hardest thing I had to admit – that sometimes, when Casey and Rob were little, autism embarrassed me. I was surprised by the response to that post – how many people thanked me for sharing that. I’m sure everyone feels that way at one point or another, but are too ashamed to admit it. After all, we aren’t supposed to say things like that.
Well, here’s another confession (and one I just talked about with my friend, Joy, yesterday)… autism sucks sometimes. There. I’ve said it before and I’ll keep saying it. There are times when it just sucks.
Does this mean that I’m not incredibly proud of Casey and Rob? No. It means, sometimes, I’m tired and I don’t want to hear someone yelling “Long Black Train” in my ear all the way home. I’ve yet to figure it out, but that’s Rob’s transition phrase from somewhere to home. He has to say it a certain number of times (Honestly, I’ve never counted – maybe I should!) when we get in the car to go home. He never says it in anyone else’s car, but instead starts as soon as they pull in our driveway. Some days, I don’t even notice it. Other days, I have a death grip on the steering wheel so I don’t yell “STOP!” at him.
It means I’m tired of her insisting that she can’t eat leftovers. I’m tired of trying to guess what’s going on when I know they don’t feel good. (She is asleep on the couch now, but I’m fairly certain it’s a sinus issue, but she can’t tell me.) I get tired of the list of fast food places that ends with him yelling coffee cup. (I still can’t figure that out – I don’t drink coffee and don’t use coffee cups – always something different and exciting here. Sorry to our neighbors who sometimes get to hear the yell at 8 in the morning. 🙁 )
I think the hardest part, though, is the stigma that you feel when you admit that autism sucks some days. The terrible guilt you feel. The worry that people will think you mean your kids are a terrible burden that you don’t want anymore, when in reality, all you mean is that you are just too darn tired to think anymore.
It means that autism in the family can be stressful – certain foods to eat, certain routines to follow, certain clothes to wear. For some families, the inability to have a conversation with your children. Casey and Rob are able to answer simple questions and will usually tell me what they need or want, but I can’t ask them what they think about a certain song or movie. I can’t ask what they did at Hopewell that day. I can’t ask if they are happy or what their dreams are. I, like most other autism parents, go with my gut on most things and hope I’m right or close to it.
The weeks that Rob didn’t feel well last month are a perfect example. He had no fever, no cough, was eating like usual…. but he was sleeping 18-20 hours a day. I kept asking if he needed the doctor and he told me no. I asked if his ear hurt – no, itches. Throat? itches. Finally, after a week, I took him to the doctor only to hear Rob was right – no ear infection, no strep. He had a virus (not COVID). Had he been able to communicate more, we might have figured that out on our own. I hate it when autism makes me worry even more about Casey and Rob.
I’m not sure why it seems special needs parents are held to a different standard when talking about their children. Maybe it’s not true, but it does appear that we get handed a lot more guilt about being tired and stressed – when we have more reason than others to be tired. Being a parent is tough some days – everyone should be able to admit it and not feel guilty. It’s normal.
If you need a shoulder to cry on or an ear to vent to, message me. I promise – I won’t judge you for your feelings. Let go of the guilt, the embarrassment and go on being the amazing parents I know you are. Stay tough – but cry when you need to. Admit when you need help. Those of us who are parents to adults with autism have been in your shoes. You will get through the tough days. Practice saying “autism sucks sometimes” – just don’t settle in those sucky days because autism is also amazing and beautiful and special. Good days and bad days – just a typical life, with some added excitement. 🙂
Since I went back to school a few weeks ago, I’ve needed help with Casey and Rob for about an hour in the morning before they can go to Hopewell. My parents, Mandy and Bob (Rob’s favorite staff person) are all helping. This week, a conflict has come up and I have no one to help one day. I stressed about it and asked who I could think of if they could help, but finally came to the conclusion that I would just have to go into school late. I am lucky and grateful that I can do that, but it just reminds me again that I still need a “babysitter” for my adult children.
Never being able to leave them alone is not something you think about when they are little – no one leaves little children alone. And you are too busy to think about the future. Then, suddenly, they are teenagers or adults…. and you still need someone to be with them all the time. Forever.
Before anyone misunderstands, I do know how lucky I am. Casey and Rob don’t play with knives or matches or the stove. They don’t eat or drink things they shouldn’t. They don’t bother medicines. They don’t leave the yard or wander away at night. I am able to take a shower without worrying. Or go outside for a few minutes. Many, many autism families can’t do any of this. They have to keep an eye on their child all of the time – no breaks for the bathroom or a shower. I feel for them. It’s a tough life – you love this person so much, but at the same times, you desperately need two minutes to yourself.
But – sometimes…. I want to be able to go with my friends without worrying about who will stay with them. I want to sit by a campfire without needing to go check on them every few minutes. I want to be able to get groceries or run errands without their “help.” 🙂 They have come so far since they were little and it was nearly impossible to take them to the store by myself. (Casey had meltdowns and Rob had sensory overload – and they both liked to dart off.) We go places all the time now and I love it, but …. I just never thought I would need a babysitter for my adult children.
I never dreamed that I would be stressing over an hour on a weekday morning when they were adults. Sometimes, the reality of our situation slaps me in the face. As amazing as they are and the amazing things they learn to do every day still doesn’t make it safe for them to be alone. I doubt either would leave the house in the event of a fire (we have talked about it – many times – that they are to go to the garage when the smoke detectors go off, but they don’t even acknowledge that it is beeping). They count on someone else to keep them safe. Neither will use the phone to call for help.
I always laugh when someone tells me to just “find someone” to stay with them. Really? Like I’m going to leave my communication- challenged children with strangers? I don’t trust easily and have been burnt by some people I did trust. So, until I know someone really well, they don’t spend time alone with my kids. Period. I even have a hard time when new staff starts at Hopewell. I can’t see them interact with Casey and Rob and I can’t see what they think of the new person. So – I just don’t trust. I hate being like this, but I don’t plan on stopping.
I’ll admit – there are times I’d like to go some place and I just choose not to go instead of asking someone to stay with the kids. I know they need to learn to be with other people and I know I need time away, but I hate asking for help for “fun” things when I need help for important things, like work. I just get tired of needing help. It’s just not something I ever thought I would have to do when my kids were adults. Even when they were both diagnosed with autism, adulthood wasn’t something I had time to think about much. The here and now was always more important than the future.
But, see – the scariest part of them always needing supervision is the future. The future when I can’t take care of them anymore. The future where I have to trust someone else to watch them constantly. Mandy and Cory always tell me not to worry – that Casey and Rob will always have them and I love them for that, but they need their own lives, too. I don’t let myself dwell on the future much as, sometimes, those thoughts are guaranteed to bring on a crying fit.
So we’ll go on, as we have been. Doing things together and taking an extra person when I may need more than one set of eyes. (Don’t let their size fool you – Casey and Rob are fast!!) Even going to the bathroom when we are out is hard – I can’t assume they will stand and wait for me. Some days, they would. The next time – that’s a big no! See? Unless you have a child with autism, you wouldn’t think about not being able to go to the bathroom if you are not at home. It’s something we all live with.
I hope each of you has someone you can trust to be with your kids when you need a break. Take breaks and take care of yourself or you will burn out. Then who will take care of your child with autism? Just like when you are on a plane – put your oxygen mask on first, so you can help others. 🙂
For more than 30 years, autism has been front and center in our lives. I find it hilarious that some people believe that makes me an “expert.” For one, neither of my kids are alike and another… No one is an autism expert. There are many people with a vast knowledge of autism – and you are the best expert about your child! Never doubt that!
A few weeks ago, the kids and I went on a boat with friends. Casey was scared to get on the inflatable that is pulled behind the boat, but with encouragement, she finally tried. Rob wouldn’t even attempt it and I was so surprised, as I thought he would be the one to jump on without a thought. After Casey rode, I tried and tried to get him to at least walk back and look at it, but he wouldn’t. Finally, I said, “Just take your shoes off and try, buddy!” and he kicked his shoes off, stuffed his socks in his shoes and was ready to get on!
What the heck? Then it dawned on me – he never, ever gets his shoes wet. When we go kayaking, he steps into the kayak without getting in the water. When we go wading, he always takes his shoes off. And he wasn’t able to tell me that’s why he didn’t want to do it – he didn’t realize he could take his shoes off. Casey and I were barefoot, but we were wearing flip flops – he didn’t understand that it was okay for him to take his shoes off and he wasn’t able to tell me that’s why he wouldn’t get on. I simply never thought about it.
Last week, I went into Casey’s room to pull her sheets off of her bed and stepped in water! Her AC had been leaking, but she didn’t see any reason to tell me. Her carpet was soaked and she had to have stepped in it to turn the AC on and off. But, thanks to autism, she didn’t even think about telling me. I forget so often that things that are important to me (like water in the carpet!) mean nothing to them. She wasn’t able to tell me or even think that it was something that I might need to know. Thankfully, the carpet dried faster than I thought and I reminded her several times that she needed to tell me when things weren’t right. (She can certainly let me know when her iPad isn’t working!)
Rob had a problem the other day and he was acting completely out of character. If I was an autism expert, I would have stopped and tried longer to find out what was going on, but as a frustrated parent, I didn’t handle it as well as I should have. When I finally had all of the facts from the situation, I apologized to him several times. I’ll admit – as much as I try to think about every possible trigger when things happen, some times, I’m tired and that doesn’t happen.
Every day, Casey and Rob prove to me that as well as I know them, autism is an ever-changing disability that will never be fully understood by me – maybe even not by them. I don’t think they always know why they do the things they do, but only that they need to do it. Their OCD causes both of them to have rituals to feel safer – she needs to jump into doors and tap things three times. He has to have all of the windows open – except the one in the craft room always has to be closed – or all of them closed and locked. I don’t understand why, but it’s really not a big deal and helps him feel better.
I don’t know why both of them are hypo-sensitive to touch, but he can’t wear certain clothes. To my way of thinking, if your skin isn’t sensitive enough to notice a cut or burn, why can it feel the differences in shirts? He will burn himself in the shower if he turns the water on himself because he doesn’t notice the how hot the water is – but he can’t wear long sleeves because they hurt? I just don’t get it.
I don’t know why some nights, he can go to sleep easily and other nights, he is up most of the night. Usually, if she has a sleepless night, I can pinpoint why, but not him. Water is soothing to him while she barely notices it. Just like everyone else, they have their own preferences and we have to learn to separate what is “autism” related and what is just their personalities. It’s not always easy, either. Every day, I learn more about Casey and Rob.
We have rough days – days that I think autism just plain sucks. Days that I’m so tired I can’t think straight, let alone try to figure out why they do things they do. There are days that I let chores slip and that I don’t think about the future. Let yourself have those days, too. You can’t be “on” all of the time. You will exhaust yourself – and who will take care of your child, then?
Never doubt you are the expert on your child. Doctors and others may know a lot about autism, but no one knows your child like you do. Just remember – while you are your child’s expert, you will never stop learning about autism. That’s the thing about autism – it seems as soon as you solve one mystery, another one will pop up. It keeps life exciting! (I choose to look at it that way so it doesn’t drive me crazy! 🙂 )
Please, though – share your knowledge and experiences with other autism families. What worked for you may not work for them, but you never know. And maybe only part of your solution will help, but often, just knowing other families have gone through the same things, will help. We will all keep learning together to make the best lives for our families. 🙂
I have to take a three hour class every year to continue to be Casey and Rob’s guardian. (Don’t panic if you don’t do this – I have discovered that even different counties in Ohio do things differently!) Yesterday, I sat through one about dementia. Honestly, I was interested in the topic as I have had some family members who had varying types. Sadly, I was bored out of my mind – they could have been talking about a person with autism.
Many different types – varying degrees of severity – medications might or might not help – how to advocate for the person…. isn’t that our lives? But – one thing that did stick out was one of the speakers was describing how not to talk to a person with dementia – as if they were a child, in a high-pitched, sing-song voice. (Even though that’s exactly how she seemed to be talking… but maybe I was just over the boredom and wanted to be done! 🙂 )
I can think of so many people that have no idea how to talk to Casey and Rob. Some, in particular, like to yell in their faces, because, you know – Casey and Rob are deaf. 🙁 I have repeatedly asked these people NOT to yell in their faces, but it goes in one ear and out the other. And those people wonder why my kids ignore them? Thankfully, they are rarely around those people. But still – how many people talk louder to someone who appears to not be paying any attention?
We have all done it. Maybe to get the person’s attention – maybe from our own frustration. Who knows? What I do know is if I talk loudly to either of my kids, they will shut down. Rob will get anxious because he thinks I’m mad. Casey will just make ignoring me a higher priority. So – always remember to use a calm, quiet voice. Trust me – they hear you whether they are acknowledging you or not. Yelling will cause a shutdown or worse.
Always speak slowly and clearly. Rob, especially, hears way too much. If there is a lot of background noise, it may take him a few seconds to understand what you said. Don’t talk with food in your mouth – don’t rush through what you want to say.
But don’t use too many words, either. Short and sweet. If you are giving directions, don’t list too many at once. I’ve spent many hours saying “Fold the blue shirt.” “Fold the black pants.” “Wash your face.” “Wash your arms.” and so on and on. Casey and Rob can follow 4 – 5 directions now, if they are familiar. If it is something new, be ready to break it down into one steps directions and be clear and concise about what you expect. It takes a while to build up to several directions at once. If we are having a rough day, we stick to one at a time. Every day is different so don’t be discouraged if you lose ground some days.
Never, ever talk to an adult with autism as if they were a child. I don’t care if you are talking about Elmo, The Wizard of Oz or Thomas the Tank Engine. Talk to the person just as you would any other adult. Casey and Rob hate to be “talked down to.” Casey will say they are “dults” not babies. Rob will just look at you as if you have lost your mind. I know it’s hard to do when you might be having a conversation about Bert and Ernie or Barney, but to the adult with autism, those characters are friends, not babyish. (By the way – I have perfected talking in “Elmo” and “Cookie Monster” voices. 🙂 🙂 My life is now complete!)
Explain what you are doing, even if you don’t think the adult with autism will understand. My kids know more than they will ever let on. I see bits and pieces come out and I’m always amazed. Rob loves to look up things on his iPad. He studies how things work on YouTube. He googles “squeaky brakes” or “broken fan” to see how to fix them. When we are baking cookies or cupcakes, I talk to them about each step we are doing. “The sugar makes the cookies sweet.” “The oven has to get hot first.” Many times, I don’t think they are really focused on what I’m saying, but then the next time we make cookies, one or the other will repeat something I said before.
Don’t use a high-pitched, fake happy voice. For one thing, the high pitch may be painful to the adult with autism who has sensitive ears. For another, even if the person functions at a child’s level, they know they are adults. You are insulting them by talking in a baby voice. Just stop it. Imagine how you would feel if someone talked to you like that. I would want to slap them, wouldn’t you?
Always, always give the adult with autism time to process what you said. This is really hard to do, as we are so used to the give and take of a “normal” conversation. I heard this tip when Rob was small and it really helped him. When I ask him a question, I count to 30 slowly before I repeat the question. Casey tends to answer quickly most of the time (if it is something she wants to answer… if not… she will ignore you forever!) Rob does much better when he is given the time to process your request and decide how to answer. Thirty seconds can seem like forever while you are waiting, but it does help. Don’t keep repeating the question – he will shut down.
On that note, try not to ask questions. Use statements instead. “Tell me what you want” is easier to answer than “What do you want?” Casey has an easier time with questions, but “why” and “how” questions are extremely difficult for both of them.
Many of these ideas will work if you have children with autism, too. Sometimes, with a child, you need to use a silly voice to get them to want to interact with you. Don’t be afraid to be silly with kids or adults! Any kind of interaction is so awesome! You may not be comfortable being silly, but try anyway. Life is too short to be serious all of the time. If I can say “Me want cookies” and “Elmo loves you” or “he he he that tickles” in character, then you can use a silly voice, too. 🙂
