Month: October 2022

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Autism and Family Isolation

Autism and Family Isolation

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.

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Autism and the Love of Siblings

Autism and the Love of Siblings

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!

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Autism, Guardianship and Parenting – A Difficult Dance

Autism, Guardianship and Parenting

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.