Month: January 2020

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How to Find a Safe Place for your Adult with Autism

How to Find a Safe Place for Your Adult with Autism

One thing I hear over and over again is what to do with an adult with autism during the day. As parents, we know our kids do not want to spend every waking moment with us. Even those who are severely affected need some diversion in their lives. And even if they don’t need a break from us, we definitely need a break from being a parent at times. I know that’s hard to admit, but saying you need a break doesn’t mean you don’t love your child more than anything in the world. It simply means you need to breathe.

As I’ve shared before, we are lucky. We have the services the kids need here in our small town. Yes, I wish there was more to do, but that’s the trade off for living in the town we all love. We had speech therapy, OT, equine and even aquatic therapy. They have a place they love to go to every day. It wasn’t always easy, though.

Many years ago, our county board of developmental disabilities had a sheltered workshop. Casey started going once a week during the second semester of her sophomore year. She loved it and continued doing that her junior year. Her senior year, she went to school Monday, Wednesday and Friday and the workshop on Tuesday and Thursday the first semester and switched days the second semester. The week after she graduated, she went to Hopewell every day.

Rob was already familiar with the workshop, so he didn’t start going until his junior year. Again, he went to Hopewell often throughout his Senior year.

Because I worked for the school that the county board has, I knew most of the people who worked at the workshop and, though I was nervous that no one would like the kids, I was comfortable that they would be safe.

Unfortunately, a few years later, their day hab was privatized. Honestly, I was terrified. Many of the people I knew would be leaving and I was worried that anyone that worked there wouldn’t be there because they had a passion for helping others but because it was a job. Or, worse yet, they wanted “control” over people who couldn’t fight back or tell on them.

Thankfully, Rob’s favorite person stayed (If you ask him about friends, he will say “Bob is my friend.” 🙂 ) and Casey seemed okay with new people. But – I was still nervous and we’ve had some bumps. I’ll be the first to admit, some of the bumps were caused by my lack of sleep and the fact that I get angry and over react when that happens. And sometimes, I’m just so sick of dealing with stuff, that I yell over little things. (I always try to go back and apologize to people – I truly don’t mean it often, but sometimes, everything seems to be too much and I lose it. 🙁 )

So – if you are looking for a safe place for your adult, here are a few tips I’ve learned.

  1. Visit without your adult. Just sat back and watch what’s going on. Is the staff interacting with everyone? Are the attendees actively involved in their day? Is it clean? Accessible for everyone? Talk to administration and ask all of your questions. I promise you – they have heard them all before. If they truly want to get to know your adult, they will be happy to answer anything. Ask about staff ratios. Ask about daily routines. Share your concerns about your adult and see how they react. I told staff that Casey could have terrible screaming meltdowns and watched their eyes to see their true thoughts.
  2. Talk to families with adults in the day hab. While administration may not be able to give you that information, you can ask if they would contact families and give them your contact info. Talk to people who go there and see what they think.
  3. Take your adult for a visit. See how staff interacts with him/her. Show them how you communicate with your child and see if they will try. Again, share any concerns you have. Sensory issues, behavior problems, dietary concerns. You need to be completely honest with the staff if you expect them to be honest with you. Ask hard questions and take notes.
  4. Once you decide where to try, take your adult the first time. Be there as a comfort if they need (Casey and Rob had a aide go with them – they never seemed to want me around! 🙂 ) and leave if they want you to go. Keep an eye on your child the next few weeks and see if you notice any new behaviors that could be telling you they are not happy there or are scared or anxious. If you see anything odd, go talk to the day hab.
  5. Drop in for visits. If you are told you are not welcome to stop in, do not even think about letting your child stay there. Stop by unannounced and see what’s happening. See if your child seems to be interacting and happy.
  6. When there is a problem, immediately talk to administration. Don’t wait and see if it gets better. (I do wait if Rob seems anxious, as he does get worked up about things they have no control over). Ask staff to contact you if they notice anything off about your child. Trust is a two way street!
  7. Make friends with the staff. No one wins if you try to be superior or a witch about your child. No matter what you think, your child isn’t perfect and staff needs to feel comfortable calling you over little issues or they won’t communicate when there are big problems. Always, always, always keep communication open! I can’t stress that enough. I’ll even venture to say that the staff at Hopewell wishes I didn’t communicate as much! 🙂 But, I feel better knowing that they have all the info they may need, whether it’s that my parents are picking up the kids that day or that one of them didn’t sleep well the night before.
  8. If they have family events, go to them. Hopewell has a Thanksgiving lunch and it’s so much fun to see old friends and meet new ones. Parenting a special needs child can be lonely. Sometimes, it’s even lonelier when they become adults as you don’t have school activities to meet other parents, anymore. You need support from others who understand your life.

A word of caution. When you are asking for recommendations, you will hear positive and negative about every place you visit. For each glowing report you hear, you will hear a horror story. Take both with a grain of salt and make your own judgments. When you decide on a place for your child, visit often. Make yourself available to staff. Just remember to follow your own gut – you will know what is best.

Unfortunately, there is no way, barring keeping your adult with you every minute, to be 100% positive of their safety. If you feel uncomfortable around a person or a place, listen to your feelings. I wish there was a guaranteed way to always make sure they are with people who love and respect them – I wish that every day. I look at strangers with suspicious eyes. I hate to admit it, but I often look at new staff the same way. Until I know you well, you are a possible danger to my children. Please don’t take offense. I simply love them more than I care about your feelings. I have to be sure they are as safe as I can possibly make sure of.

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Autism and the Ever-Changing Rules

Autism and Ever-Changing Rules

So many things in our lives are set in stone. Casey and Rob like things a certain way and that’s that. While I might try to change those routines once in a while, I’m often quickly corrected about how I am supposed to do things. Sometimes, though, Casey or Rob throws me a surprise and I saw a few of those this week.

The full moon late the week before really messed with both of them. She was more irritable and he wasn’t sleeping well. Imagine my excitement when I read the new moon on January 24th is supposed to have an even bigger affect on people’s emotions. (While I’m not a firm believed in Astrology, I do know that certain things mess up our emotions and the stage of the moon is definitely one of them!) After last week of them taking turns not sleeping well, I’m too tired to want to think about what this week will bring.

But, I did see a few positive changes last week. I’ve written before that Casey refuses to have her feet touching the kitchen floor when the light is turned on or off. She will hop and squeal and run out of the room. (Actually, it is a little funny at times – and most of the time, she is laughing. I think she knows how silly she looks, but simply can’t help herself!) Last night, we had company and she wanted more chicken dip. I told her she had had enough, but she laughed at me and grabbed a plate.

I went into the kitchen and told her no, again. (I was more irritated at the grin on her face when she did exactly what I told her not to do than I was that she was getting more!) She grabbed the lid off the crock pot, laughed at me and started to help herself. I flipped the light switch and watched her giggle and run to the dining room. She was laughing, I was laughing and so was everyone else. But – she came into the kitchen for more. So I flipped it again. And again, she squealed and jumped back into the dining room. After a few more tries, she finally decided that she wanted dip more than she wanted to be off the floor when the switch was flipped.

Amazing! We just stood and watched her walk calmly (well, sort of! 🙂 ) to the crock pot as the light went on and off. Now, before anyone thinks I was starving her – she had already had 3 huge pieces of pizza, 2 cookies, and two huge helpings of the dip, plus tortilla chips. She was not at all hungry and I was afraid she was going to make herself sick. She was able to get beyond her routine when she was focused on something else. (But – this morning – she jumped a foot when Rob flipped the light on! 🙂 )

We had some bad weather Friday night into Saturday. I’m sure Rob knew it was coming, but he didn’t say a word about it. He wasn’t any louder than usual and not at all worried. This is really out of character for him. My only guess is that he was so tired from not sleeping right the whole week, that he was just happy Saturday would be a day to sleep in. And that tiredness helped him crash Friday night instead of getting worked up by the storm. (I’m so used to him letting me know when bad weather is coming that I was shocked Saturday morning! )

Rob got a weighted blanket for Christmas that he seemed to love as soon as he got it. He pulled it up over himself and seemed to relax with the weight. Now, we have another rule. He can use the blanket (without the cover) only on his lower legs when he is sleeping. If he is sitting in his recliner and looking at his iPad, the blanket (with the cover) can be up to his waist. (I can’t make this stuff up – and I can’t keep track at times! 🙂 )

She still needs to pat socks, shoes, the floor in front of the closet and the closet handle to put her shoes on. He still needs his snack and pills to be waiting when he gets out of the shower. She still needs to wear certain slippers at certain times of the day. He still needs to wear red, sleeveless t-shirts with wind pants. She needs two waffles, he needs three.

So many things never seem to change, but then, all of a sudden, I realize that routines have changed! I have no idea why they relax their needs – I have no idea why other routines take their place. I am just along for the ride most days! 🙂 I think when Rob’s anxiety isn’t so bad, he relaxes his grip on routines and once he realizes he is okay with change, he doesn’t always go back to it. (Now, watch – he will prove me wrong – again!) I do so many things out of habit now that maybe I’m the reason things rarely change and not that they need it to be the same. 🙂

I hope the new moon doesn’t effect your home too badly! Remember to take care of yourself – steal those few minutes of “you time” whenever you can! 🙂

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You are an Amazing Autism Parent

You are an Amazing Autism Parent

That probably sounds like an odd title to a post, but I wanted you to know it. I have no idea what your life is like, but I know enough to know you are tired, stressed, maybe lonely, certainly worried and an amazing autism parent.

Like most people, last week was our first week back into our usual routine and it seemed like it was a month long. Rob was happy to be back to normal, Casey not so much. I went to wake her up one morning, and she said “no, snow day!” 🙂 As much as I wanted to crawl back in bed, too, I laughed and told her to get up. Not long after she got up, a memory popped up on Facebook reminding me that one year ago, we were all home because of a huge snow storm. How I wish I had her memory! (on a side note, it was almost 70 here yesterday!)

The first week back with a full moon and crazy weather at the end. Imagine my excitement! Casey wouldn’t sleep Monday, Rob was up and down all night Tuesday, she didn’t want to sleep Wednesday and he had a terrible time going to sleep Thursday. Yayyy full moon! Thank God, they both crashed Friday and slept last night, too, cause I was tired. Like crying over little things exhausted. (yep – crying meltdown yesterday morning – sorry, Dad!) So – there – for those who message me and tell me I have an easy life with autism… some days, yes, I do. Others, nope, not so much.

So this brings me to my point. I see you. I know you have days when you are crying in the shower (if you have time for a shower!) so no one knows, especially your child. Because you never want your child to think they are the reason for your tears. Or so no one knows that the “strong” person broke. I see you. I get it. I’ve cried in the shower more times than I hope to ever remember.

I know you are so tired that simple things like what to make for supper are more than you think you can handle. There were weeks when Saturday supper was frozen pizza for Rob and me and ravioli for Casey because I knew they would both eat and I didn’t have to think about it. Healthy? Nope… but, sometimes, you gotta do what you gotta do. They were happy and so was I. 🙂

I know that beyond not getting much sleep, you are tired of fighting for services for your child. You are tired of phone calls from the school. You are tired of therapies, doctors, insurance. You are tired of trying to figure out how to pay bills. You are tired of making the same food, washing the same clothes and watching the same TV shows or movies. You are just tired of it all.

But, here’s what else I know. You are doing an awesome job! You may not think it. You may not believe me. That’s okay. I know you are. I know that your child’s eyes light up when they see you. I know you wonder if your child loves you or even cares if you are around. Yes – they do. I promise you that. Your child may never say a word, but they love you. They need you – the imperfect, exhausted you. Just like you need them.

I know that you put yourself last. That all of your energy goes into taking care of your family and home before you think about yourself. I also know that you can’t do that very long. You have to think about yourself or you won’t be able to take care of them. Trust me – I know it’s hard to think of yourself, of spending time doing something just for you. But, if you don’t, you won’t be able to take care of them. I learned that the hard way – I speak from experience. 🙂

I know that you question every decision you make for your child. I know you are lonely and feel forgotten by friends, at times. I know your family may not be as supportive as you want. I know you may have had to limit the time your child spends with some family and that you hurt over that.

But really – for all of you that needs to hear this. You are an amazing autism parent! Every day, you get up and you do the very best you can for your child. You love that child more than you ever thought it was possible to love anyone. You brag about their little steps forward. You try every thing you hear about that may help your child. You do research better than a detective. You ask questions and reach out to other parents who may be able to help you. You are stronger than you think!

Always remember – from one autism parent to another – you are doing a wonderful job! You may not always believe it, but I have faith in you. Be as proud of yourself as you are of your child. Brag about yourself, too. You got this!

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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.