Jen is the mom of three amazing adults. Her oldest daughter and her son both have moderate autism. She is a freelance writer who is passionate about spreading awareness and hope to families with special needs.
I’m not worried about taking Casey and Rob many places anymore. I’ve gotten that tough skin and can usually ignore anyone I need to. (Yes – I have days that the comments bother me, but not as often as they used to.) But – it’s still so much fun to have an outing with a group of people who completely “get it.” They know autism like I do and nothing any one in our families does bothers anyone else.
It’s an amazing feeling.
Yesterday, we went bowling with our autism support group families. There were about 30 of us and it was so much fun. The bowling alley was so accommodating for our needs and gave us extra space so no one would have to wait long for their turn and even asked if they needed to do anything about the lighting.
But the best part was watching Casey and Rob and everyone else have fun. When a child laid on the floor, no one cared. When Rob yelled to hear the funny echo, no one cared. When one wanted to tell everyone else how to bowl, no one cared. And they all cheered for each other. I’m sure the whole place could hear us cheering for each bowler.
I did have to remind Casey and Rob when it was their turn, but really, I could just stand and visit with the other families or take pictures. Or just soak in the fact that I didn’t have to care if anyone made loud noises or was humming or rocking. I could just relax and laugh the time away.
I have shared many times that I think you should take your child wherever you want to and learn to ignore the comments of people around you. Your child has the same right to be anywhere that everyone else does. But – it’s also so important for you to have a group of friends who completely understand (Well, as much as anyone can, since everyone with autism is so different!) what your life is like.
It’s important for you and your family to have those times when you can just be a family and not the “special” family. It might be hard to find other families like yours, but it’s so worth it. We are extremely lucky that our small town embraces our families for the most part and places are willing to host events for us, like our sensory friendly movies and pool parties.
Try to connect with other families in your child’s class. Join a support group (Or start one if you can’t find one). Talk to movie theaters and see if they would be willing to do a special movie and let people know it’s happening. It’s easy to do – especially with social media.
I know it’s hard to join a group, but I also know that no matter how many close friends you have, friends with special needs children are important and will completely enrich your life. They will have ideas and advice for you that no one else can give and are perfect to bounce ideas off of.
Yesterday was so much fun. I hope everyone that was there knows how special they are to me and how thankful I am that they came and had fun with us. I can’t wait for the next event!
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.
As I sit here writing this, I can hear Rob in his room saying, “Trrreeeeee.” He’s happily building Christmas trees with his Legos. Casey is listening to Christmas music on her iPad. All of the trees are on and everything is ready for Christmas, except to finish baking. This is the most magical time of the year in our house.
We have visited several light displays. Casey and Rob have shopped and wrapped presents. Casey carefully looks under the tree several times a day to make sure her presents are still there. She never touches them, but she does encourage Blue, our dog, to nose through them so she can peek at other presents easier. (Blue loves to unwrap presents!) Casey knows the plans for Christmas Eve, Christmas Day and the day after Christmas.
Some of the coolest moments happened a few nights ago. Santa Claus visited our ASK Autism group and everyone got to meet him and have their pictures taken. Because we are a small group, even the children who are scared of Santa were able to talk to him. Casey was so excited that she couldn’t sit still and when she heard Santa’s sleigh bells as he came in the door, she jumped up and watched with a huge grin as Santa came closer.
Rob sat near Santa and, after some encouragement, told him he wanted Legos for Christmas. He was happy, but not nearly as excited as Casey was. She told Santa she wanted a big Grover and a Big Bird. Then she watched as the smaller children (yep – she managed to talk to Santa first) went up to Santa.
Rob will take the week as it comes. He’ll do whatever, whenever and go with the flow. Casey will have some stressful moments when the excitement gets to be too much for her and she needs to decompress. She’ll be on edge, wondering if she’s been good enough for Santa to bring her gifts and won’t sleep on Christmas Eve until she is sure he has visited us. It’s hard to watch at times. I tell her all the time she’s been so good that I’m sure Santa will leave her some amazing presents, but as much as she loves holidays, she gets anxious about them, too.
She will want to be sure everything she thinks is important happens and she’ll be very serious. She will have fun, too, but she will constantly be thinking of the next activity. It’s a hard week for her, even as she loves it all.
Our Christmas won’t look like yours. Santa will bring things my kids enjoy – socks, Sesame Street, crafts, construction paper, Legos and cards. I don’t care that some people won’t buy things that aren’t age appropriate. I buy what they like – same as I would anyone else. I hope each of you does the same and are able to ignore people who insist that you buy things for your child’s age and not their interests.
We usually have a fairly relaxing holiday that is spread out over a few days. This works best for our family. We don’t go to a lot of parties – we choose things we can do without large crowds or lots of noise. Sometimes, it’s a tough balance between the needs of my “go go go girl” and my “stay at home son” but we manage pretty well, usually.
Merry Christmas to each of you! May your holiday be filled with love and laughs!
Who makes the rules? I know that seems like an odd question for a Christmas post, but really, I do want to know. Who makes the rules? The rules that decide why behaviors with autism aren’t “right”? Who decides?
I took Casey and Rob to see the Wild Lights at a zoo last night. Casey was so excited that she giggled the whole drive (about an hour and a half). Rob reminded me the whole way where we were going and he was going to see “boo” (blue) lights and a lake.
Our first stop is almost always a train ride that loops around a small part of the zoo. We got in line and Rob was so excited that the line was along the tracks and he could watch the train coming and going as we waited to buy our tickets. They both had huge smiles on their faces. Rob was humming and bouncing, but not moving out of one spot. Casey was smiling and rocking slowly back and forth. Both were obviously excited.
In front of us was a man, woman and five kids, ranging in age from maybe 1 to 6 or7. All of the kids, except the baby who was being held) were dancing around and squealing – just being kids, until the oldest decided to climb over the rope barrier and pull at the strands of lights covering the bushes. Then the other ones followed suit. Casey and Rob just watched, but really, couldn’t have cared less what the kids were doing. The parents, meanwhile, are completely ignoring the fact their kids are pulling lights off of the bushes.
Finally, the mom yelled at them and made them come to her. Casey giggled at the kids getting into trouble, but it wasn’t obvious. So the little angels are standing in a group whining for everything under the sun and the mom glared at Rob. He was standing well out of their way (he hates getting too close to anyone!), but he was humming and rocking a little louder and faster and apparently, she didn’t approve of the noise.
I’ll be honest, if he was loud, I would have asked him to use a quieter voice, but we were in a line of people all talking and laughing and beside a set of tracks with a train coming and going every few minutes. I barely heard him – and I was standing right beside him. So, I watched her and decided since I was wearing a Grinch hat, I might as well act like one. She whispered something to her husband and pulled the kids farther away from us (cause, you know, autism is as contagious as COVID) and glared again. And the kids yelled louder.
We stepped up as the line moved. She turned to me and asked me not to crowd them. At this point, we were probably three feet from them – in a line. I smiled and said we wouldn’t crowd since her kids needed plenty of room to move. (not being sarcastic – we all know how kids are in line!) She popped back with “at least they aren’t making that annoying humming noise” Without even thinking I said, “yep, you are right – yours are destroying the hard work of the zoo workers.”
By then, her husband had their tickets and they moved on (and thankfully, were the last passengers on that train!) and the sales guy was laughing when I stepped up. “Good for you!” was all he said before “Merry Christmas.”
Casey and Rob enjoyed the train ride and seeing the lights in a tunnel, but I was wondering – who decides it’s ok for kids to cross barriers and pull at lights, but not to hum and rock in place?
When they needed to use the restroom, we ran into another “rule-maker.” The zoo has family bathrooms that just have one toilet, but it’s a bigger area if you need to change an adult. No one was using it, so I sent Casey in and when she was done, Rob used the bathroom. Meanwhile, another lady was sitting on a bench watching. As I waited for Rob to come out, she decided to tell me how family restrooms were to be used – and it wasn’t for people “like” us.
I thought maybe she didn’t realize they had autism, so I tried to explain. She cut me off and said they didn’t need to use the family restroom, as they were capable of going into the restrooms. I tried again to explain that it wasn’t safe for Rob to go in alone and neither could be trusted to wait outside while I helped the other. She declared again that they weren’t little, weren’t handicapped and that I just didn’t want to wait in the line like I should.
It’s Christmas, so I smiled and told her she was certainly entitled to her useless and unwanted opinion and to have a Merry Christmas. But, really – who decides the rules for the family restroom? Who decides that autism isn’t a disability? Who decides what’s best for my kids? (I can answer that one – me! It was just rhetorical.)
Casey and Rob were completely unaware of her, as they were distracted by the light show on the lake, but as we sat and watched, I wondered again. Who makes the rules? And what gives perfect strangers the confidence to believe they need to share their opinions with me? I didn’t tell the mom by the train her kids were brats and she needed to stop them. What gives her the right to tell me? (Besides just bad manners)
And now I’ll give you the answer to my question – who makes the rules? Society. But the thing is, the rules change and need to be changed. So don’t avoid taking your child anywhere! Only by taking our families to the zoo and to the park and to restaurants and to stores will society begin to know us. And once they know us, and autism, they won’t be as concerned about it. We’ll be just another family waiting in line for a Christmas train.
Don’t be scared to go out. Prepare yourself and enjoy. Maybe you’ll have to make short trips, at first – only you know what your child can handle. I’ll be honest – there are places I don’t take Casey and Rob, but it’s not because I’m concerned what others will think. I know what they can handle and what they will enjoy. I wouldn’t drag a typical child to something they wouldn’t like – why would I take a person with autism?
Perfect your glare. Stiffen your back and remember – you and your family have every right to enjoy and experience the same things every one else does. Remind yourself this quote by Dr. Seuss “Be who you are and say what you feel, because those who mind don’t matter and those who matter don’t mind.”
Every year, Casey has a list of things in her mind that we have to do for her to have a wonderful Christmas. It’s never anything too complicated, but she’s already reminding me of what all she wants to do.
They were both excited to go to the Christmas Parade. It was so cold and windy, but they were bundled in sleeping bags. I was kinda hoping it would rain so I would have a good excuse not to go, but after seeing how happy they both were, I’m so glad we got to go. Casey started waving to Santa when he was 3 or 4 blocks away and didn’t stop till she couldn’t see him anymore. It completely amazed her when Santa waved back to her. She giggled the rest of the evening about that.
Rob has learned to cover his ears as soon as the fire trucks get close to us. This is such a huge step for him – to be able to take care of what he needs by himself. Three years ago, I had to stand behind him and cover his ears for him. Last year, I had to remind him the trucks would be loud. This year, he handled it all on his own.
They were both really surprised when I took them to a light display the night before Thanksgiving. It was a mild day and seemed to perfect to not take advantage of it. They both enjoy the music and light show, but once again, I was reminded to not get too comfy when we are out and about. When we stood up to leave, they both took off for the car and I had to grab both to keep them from walking right into the street. Proof once again that just because something hasn’t happened in a while, doesn’t mean it won’t. They both got a stern lecture about staying with me, but they were more focused on a snack than their own safety. 🙁
Casey has finished some of her shopping and all I’ve heard for the last hour is she needs to wrap it – tonight – before her bath. And that she still needs to go shopping and that she wants to go – now. Rob has almost finished his shopping. He likes to pick out gifts, but he’s not worried about it. He knows I’ll make sure his shopping is finished in time. Once December gets here, Casey is in Christmas mode.
We got to enjoy a Christmas movie Saturday morning (our local theater plays sensory friendly movies several times a year) and then a light/inflatables display at our fairgrounds Saturday evening. Two more things checked off Casey’s list.
She has reminded me that we need to get grandma and go to the “biggest fairgrounds” and see lights and have a snack on the way home. She has reminded me that we haven’t gone to the zoo lights, yet, and last year, we went the Monday after Thanksgiving, and it’s not right we haven’t gone, yet. (The fact that it’s been cold and rainy doesn’t matter to her – only the schedule in her mind).
It can be hard to find Christmas activities that you feel safe taking your child to. Just remember that your Christmas traditions don’t need to look like mine or your best friend’s or your neighbor’s. Your traditions should fit your family. Maybe a movie night at home with everyone wearing PJ’s and throwing pillows and blankets on the floor in the living room.
Maybe it’s making cards or pictures as gifts. Maybe it’s putting lights and no ornaments on the tree. Whatever your traditions are, enjoy them. Don’t worry about everyone else – just enjoy the magic of the season with your family.
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.
Anyone who has followed our story knows I often talk about how close all of my kids are. Mandy has always been Casey and Rob’s biggest defender – and tormentor – and teacher – and the one who has gotten hurt the most by autism. She will deny it forever, but I know that there were days she didn’t like autism very much. But – we all have those days. Now, Rob has Cory to look up to and model.
Keeping Rob’s face clean shaven is a chore that neither of us particularly like. I leave it up to him when he wants me to shave him. A few weeks ago, he decided he was going to grow a beard like Cory’s. Every time I mentioned shaving, he covered his face with his hands and said no thanks! I had my doubts that he would grow a full beard, but it’s his choice. He lasted longer than I thought before he asked to shave. I think he was disappointed his “beard” wasn’t as full as Cory’s so he wanted it gone.
Rob doesn’t like new shirts. He insists on the same type of shirt with the sleeves cut off. We were in Kohls a few weeks ago and Mandy found a shirt for him to look at. He refused it – tried to put it back on the shelf. Until Mandy said the magic words “Cory has one like this.” So Rob bought it.
Rob is a follower. He watches Casey, Mandy and Cory for signs of what he needs to do. He won’t wear a coat unless Casey does and he chooses which coat to wear based on what she’s wearing. He wears boots when she does (and doesn’t understand that sometimes, girls wear boots to dress up a little 🙂 ) and he checks that there are two lunch boxes every morning.
Several months ago, Cory got a new truck. We were at their house one day and a friend of Cory’s stopped to see the truck. Rob was outside, too, and so happy and excited that he could hang out with Cory and Collin as they talked about the truck. That’s what Mandy and Cory do for Casey and Rob – they include them in everything. So many siblings are tired of autism and disabilities and I completely understand that, but somehow, I got lucky enough that Mandy and Cory want to spend time with them.
Casey doesn’t tend to follow others. But she is careful to watch out for Rob when they are together. And Rob knows that Casey feels safer holding onto someone in crowds so he holds her wrist (she is not a big fan of holding hands very often) or puts her hand on his arm. They both feel safer when they are together and as much as they annoy each other at times, I wouldn’t want to be the person who tries to hurt one while the other is there. I think there would be a fight – and my kids are too stubborn not to win.
But for all the ways they protect each other, they are just as likely to annoy the other one. Just like typical siblings. She’ll change the radio station away from the song he is listening to. He’ll play his iPad loud while she is trying to watch a video. They rush to get to a certain chair at grandma and grandpa’s house and will take it from each other. He will touch her plate and giggle. She will open his door and turn on his light (he hates that!).
We went to a Halloween dance the other night and once again, I heard “They aren’t anything alike – why not?” For some reason, since they both have autism, people expect them to be just alike. Even twins are not exactly the same in every way! While my brother and I are a lot alike in some ways, we are very different in others. I’m not sure why siblings with autism are expected to behave exactly alike.
Casey, Rob, Mandy and Cory are alike – and different. They are each perfectly who they are meant to be! Autism doesn’t define them or our family!
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.
Every mom knows the scene. One child is upset and the other is making things worse. I’ve shared before how Casey and Rob will try to irritate each other at times, just like typical siblings.
It happened again last week. I’m still not sure what was upsetting Casey, but she yelled once. I went to her to try and calm her before she lost control and seemed to be making progress – until I saw her eyes change and another yell came out.
At the same time, I saw a reflection behind me. Want to guess who was standing in the hall laughing at Casey? Yep… Her sweet little brother. 🙂
I told him to leave her alone and go watch TV. Rob pointed at her and said, “No fits, Casey!” as he turned away, giggling. She was furious! I stepped in front of her and started talking about different things we would be doing this week and she calmed down.
Until we went to the living room and Rob started in on her again. “No fits. That’s bad. No yelling.” And he was laughing. I finally had to send him to his room with his iPad so I could calm her down.
Don’t believe for a minute she never picks at him. Yesterday, it was his turn to pick the CD in the car. He did and I asked Casey to put it in. Instead, she picked what she wanted. When it started playing, he went on repeat “mix! Mix! Mix!” While she looked straight ahead with a big smile on her face. (I changed it to his, but she kept turning around and grinning at him).
While they do pick at each other, they are also fiercely loyal and watch out for each other. Casey will tell me if someone is mean to Rob and Rob holds her hand when we are in crowds. (Neither of them like crowds, but she wants to hold onto someone so she feels safer).
When he can’t find her, he asks where she is. If she gets home first, she asks for him (though, often, she doesn’t think about him until her color by number pages are done! 🙂) But, that’s siblings for you!
I’ll admit, it’s frustrating to me when they pick at each other, but at the same time, I’m proud of them. They are siblings first – autism is secondary to that and it shows!
Autism doesn’t define them and you shouldn’t let it define your child, either. Autism is just part of who they are, like their hair or eye color. Your child with autism needs the same rules as your typical children.
Enjoy the sibling squabbles. Be happy they are aware enough of each other to argue like siblings always do.
