Tag: autism adult

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Autism and Little Tiny Steps Forward

Autism and Little Tiny Steps Forward

Yesterday, I heard about a Fountain of Dogs that a city not far from us has and decided to take Casey and Rob today. Casey had already asked about going for a long hike and I knew it was just too hot, so we went to the fountain instead. I knew she would like it just because we went somewhere and I thought he would because it’s water.

It is just as it’s described. A fountain with dogs in and around it – all spraying water at the center where a giant golden bone is displayed. She was laughing as soon as she saw it. He walked quietly to it and just stood there. I could almost see his shoulders relax as he watched the water sprays. Soon, he was sitting on the edge. He didn’t smile. He didn’t touch the water. He just watched. And his body became even more relaxed. When a bench in the shade became available, he moved to it and again, he was the picture of complete relaxation.

Casey, of course, had to get her picture taken with several dogs and had to try the drinking fountains (they were off because of the virus, I am assuming). She had to walk all the way around the fountain. I sat on a bench near Rob and enjoyed the fountain. As I watched them, though, it occurred to me that it wasn’t too long ago a trip like this would not have been a good idea.

For one thing, keeping Rob out of water has never been easy. He is drawn to it (aren’t many of our kids??) and can’t resist putting his hands in. He did dip his fingers this morning, but he made no effort to jump in the fountain. When he was little, I would have been sitting on him to keep him out – and Casey, too, probably. Visiting the fountain would have been an epic failure.

And – I let Casey walk around by herself. The fountain is on the corner of two busy streets (but, it’s Sunday, so not as much traffic) and even a few years ago, I wouldn’t have let her get that far from me – especially near streets. She has a history of bolting when she sees something she wants. But, today, I sat in the shade and watched her wander around and check out all of the dogs. She got right down beside a few of them and looked right in their eyes. (She even sat on a few!) Rob watched the water and never said a word.

As I sat there, I wished that the other people who were there had a clue just how huge this was for us. I wished someone else could see them enjoying something so simple – and that I was enjoying it, too. I wasn’t trying to keep her from bumping into people (she really doesn’t watch where she is going!). I wasn’t fighting to keep him out of the water. I wasn’t trying to keep him quiet. I was sitting – just like the other parents. It’s an odd feeling.

I thought of the many, many times we had to leave somewhere before everyone was ready because of autism. Whether it was a sensory overload or a meltdown from hunger or heat that they couldn’t communicate to me. Maybe it was just too much for me to keep fighting to keep one safe while the other wanted to run. Maybe I just didn’t want to deal with the stares. There have been lots of reasons why we didn’t try (or didn’t stay long!). But today – all of those little, tiny steps forward were obvious.

And that’s one thing about autism. There are always steps forward. They may be incredibly small, but they are there. Maybe your son hung up his coat or your daughter took her dishes to the sink. Maybe someone learned to put on their socks or grab their backpack as they left the house. Everything that so many other parents take for granted – we celebrate! Because, we all know, for every step forward, there will be one back. Sometimes, it feels like you are just stuck in the same place – no progress, no improvements, no reason to celebrate. I’ve felt that way – many times.

The funny thing is, I remember one particular rough time. It seemed like neither was making any progress – that we had been working on the same darn things forever and a day and weren’t getting anywhere. I was tired – fed up – discouraged – done. I just didn’t have the energy to care about those baby steps anymore. But, my aunt and uncle were visiting from Minnesota and we went to my mom and dad’s house to see them. (Honestly, I was ready to say “nope, ain’t coming” but I really missed my aunt and uncle, so I dragged the kids out of our house.) Anyway, while we were there, Rob was upstairs doing Rob stuff and Casey was sitting in the chair, smiling.

I was flopped on the couch next to my aunt when she said she just couldn’t believe how different they were from when she had seen them several months ago. I remember just looking at her wondering what she meant. She went on and on about the differences – how calm she was – how she was willing to talk a little more – how he looked at her when my aunt said hi to him – how quiet he was upstairs. And I was ashamed of myself. I couldn’t see the forest for the trees, apparently. Once someone else pointed out their progress, I could easily see it. Sometimes, it takes an outsider to show us just how much progress our kids make – every day!

When you are living the slow, steady path with all of the setbacks we see, it’s hard to see that your child is going forward! It’s happened to me, many times. You get so blinded by the long lists of what they can’t or won’t do, you forget there is a long list of what they can do! (Personally, this is one reason I hated IEP meetings so much. They were always about what Casey and Rob couldn’t do – not what they could! I thank God that their teachers always started with the list of awesome things they could do to start off. I wish all teachers could do that!) You forget that last week, he couldn’t make his bed or she couldn’t rinse her hair.

You forget that you couldn’t let go of their hands for fear they would take off. You forget that they can shower on their own and fold their clothes. You forget that they say “Hi” and name the person they are talking to. You forget that they stand for the flag and the National Anthem. You are too busy remembering he can’t tie his shoes and she can’t count money.

I encourage each of you to stop thinking about the can’ts for a few minutes and look how far your child has come. Enjoy every single one of those baby steps forward – shout it from the rooftops! Brag on Facebook! Send out texts – let everyone know about the steps forward! Those little steps are just as important as the big ones – and acknowledging those steps will keep you going during the rougher times.

Maybe one day, you will be able to sit by a fountain as your daughter explores the area and your son quietly relaxes in the shade. Nothing is impossible! 🙂

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Autism and a Busy Week Back in a Changed Routine

Autism and a Busy Week Back into a Changed Routine

Last Sunday evening, Casey, Rob and I talked a lot about going back to Hopewell on Monday. I wasn’t sure about a lot of the details, but I sat with each of them and answered as many of their concerns as I could. It was hard, since I wasn’t sure about much of the routine, either, but I could tell them that I would be taking them each day (the shuttle they used to ride are now public transportation – anyone could get on with them. I’m too paranoid to let them ride with complete strangers right now) and picking them up.

I told them that they would be in the window room with 8 of their friends, but that I didn’t know who their group was. They were so excited to be thinking about going back to Hopewell, I’m honestly not sure either of them was really listening to me, beyond that there would be no shuttles right now.

Hopewell is opening later, so we could sleep in and not have to rush around Monday morning. How crazy is it that it took me forever to pack their lunches? Three months of not packing lunches was great and I just couldn’t think what they each liked to have in their lunch. They were both up earlier than they needed to be – too excited too sleep in. Rob even put a new shirt on without a fight! They both giggled and giggled as we waited until it was time to go.

When we got there, Rob wanted to go into the cafeteria, as that was their usual routine. They gathered in that room before starting their day. He got a little anxious when I wouldn’t let him go in and then a stranger was trying to make him go to the big room. He started flapping at his ears – getting worked up. Casey ran down the ramp to the window room, but she couldn’t get to her locker. She turned and looked at me. Rob was really stomping by then because he couldn’t get to his locker. (They had to build a “wall” to separate the two groups – they are not allowed to be near each other because of the COVID – 19 worry.)

I was close to tears as I left. I could feel their anxiety and worried all day that they were not listening to their staff person – that they were taking their masks off or running to other areas of the building. (In normal times, they have several rooms that they can go to for different activities). Bob and Reagan picked them up right after lunch for their usual fun time. Rob went to aquatics – Casey got ice cream and a coloring book.

When they were dropped off at home, they were both happy and smiling so I took that to mean their day was good. I got a text later that said they both did well and that the staff was working to iron out some bugs in the routine to make it easier for everyone.

Rob still seems happy to be going to Hopewell, even with the changes. They have to have their temperatures taken as soon as they enter the building and they stay in one large room all day. I need to find out what they are doing all day. They have both brought crafts home, but I know they will both get bored with that at some point.

I think Casey might be already. She thinks of Hopewell as a social place. She is used to going out of the building most days to volunteer or for walks. They are not leaving the building and she is already asking for her “trip” papers. I told her there wouldn’t be any trips and she is not a happy person. Wednesday evening, she was working herself up into a major meltdown until I told her that we were still going to do our plans for the summer.

We made a list of things they both want to do this summer and I told her we would still do them. She asked about Hopewell and thought it was funny when I told her if we wanted to do something, we would just skip Hopewell. But, then, she wanted to start writing on her calendar when we would be hiking and swimming. I tried to explain to her that we can’t write things like that because we have to watch the weather and she managed to work herself up again.

When she gets in one of these moods, she flips her head and her eyes get very intense. She can’t stop asking questions – always the same ones over and over until I am ready to scream. But I also have to walk a thin line, as if I get upset, then she escalates quickly. I’m sure part of the issue was being tired after a long week and partly, being upset that Hopewell has changed in ways she can’t understand and doesn’t like.

By Thursday, she was focused on going hiking and taking pictures and refused to hear anything but that we would go. Luckily, she was happy with a short walk and posing for a few pictures on our way to my parent’s house. But, yesterday, she started in again about canceling Hopewell on Wednesday and going to a state park for a long hike. She doesn’t want to hear that we can’t plan anything outside right now because of stormy days coming. She wants to hear she can do everything she wants. (don’t we all want to hear that?? 🙂 )

I am worried that this is going to be our new normal. He is going to want to go to Hopewell and she is going to want to skip it. I expected their first weeks back would be stressful for both of them, but honestly, I thought it would be Rob having more issues than Casey. I was sure his anxiety would flare up with all the changes he has to deal with. She has been so relaxed about all of the changes since March, that I thought she would continue on that path.

And right there is something I’ve learned really well with autism over the last 30 years. Never expect anything, cause it will change. And usually faster than I ever dreamed it would. And it also points out how far he has come. Anxiety is something that he has had to deal with for 10 years. He has learned not to let it overcome him and tries to come to me for help before it gets out of control. I never thought that would happen.

Of all the changes that were going to happen at Hopewell, I cannot believe that I never thought about her “trips” as being an issue. That’s all on me – she loves going places and I never even thought about preparing her for staying there all day. I know how much she loves being out – definitely a “duh” moment for me.

I’m anxious to see how this week goes – to see if she is more accepting of their new normal or if I’m going to need to take drastic measures to help her stay calm. As well as she has done with everything in the last three months, I think she is finally reaching the end of her patience. (Aren’t we all?)

So fingers crossed for a nice day that we can go hiking. And for him to be okay with skipping Hopewell! It seems like this could be a rock and a hard place for me, but then I think about how quickly they change and know that worrying isn’t going to help anything. One day at a time… one step at a time.

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Autism and the Little Things

Autism and the Little Things

With all the craziness still happening in the world, I thought I would share some bright spots from our week – and show the autism doesn’t always win!

1. Rob asked for a haircut! Yes – you read that right! When he was small, hair cuts were a nightmare for him and me and usually involved me holding him tight against me as my mom used the scissors. By the time it was over, he was screaming, I was crying and we were both exhausted. Now, I know it was all sensory but, at the time, it didn’t really matter.

He has let me use clippers on his hair for years (I never have figured out why the scissors were more terrifying than the buzzing clippers) but today was the first time he asked for one. Then, he stuck his chin out and made me understand he wanted a shave, too! I’m still amazed! 🙂

2. Another Rob thing… Trimming his nails. Again, it used to be like trimming nails on an octopus. He hated every single second of it and fought like a wild cat. He’s been okay with having his nails cut for a while now, but he really doesn’t like it.

Tonight, as I cut them, he inspected each nail and if I didn’t cut it enough to suit him, he folded all the other fingers and stuck the one that needed done again in the clippers. 🙂

3. Casey roasted her own marshmallows! While she loves them, she has always been scared to be close to the fire pit. Tonight, she did it! Very carefully, but with a huge grin on her face. It was so exciting to see! 🙂

4. We went for our walk one day last week. When we got home, I asked Casey to get the mail for me. Our mailbox is beside the street and this is always been something I never dared to have her do.

She was so proud to open the mailbox and bring the mail to me. She even waited in the yard for a car to pass before she looked in the box! 🙂

5. Rob swept his room! He has before, but it’s often a quick brush and not really done well. This time, he moved his shoes, containers of blocks and the fan. He even swept behind his recliner and door. He doesn’t like to use the sweeper, but he’s getting awesome with the broom! 🙂

6. There are signs along the path we walk – little things to build conversation between families. (these are new and change often since the social distancing started…. Walking is about all families can do together away from home.) Anyway, Casey was beside me and Rob was several feet behind us.

I read one to Casey that asked her to name three things that start with R. She said Rob, red and Rose. I tried another letter and she answered again, but said done.

Since it was quiet, I realized I could hear Rob. He was reading all of the signs and even answering some of the questions! He talks so quietly, I hadn’t heard him before. More proof that there is so much in their minds that we may never know about! 🙂

7. This one has been happening for a few weeks, but I’m still so excited about it that I wanted to share it again. Rob doesn’t like change in his routine and I always try to tell them before they leave in the morning (you know – before social distancing and the fact we are all here together! 🙂 ) who would be here when the shuttle brought them home or if Grandma and Grandpa were picking them up that day.

We decided to try personal care services and split Casey and Rob up. She is fine without him, but he relies on her a lot when they are together (though, in crowds, they reach for each other and hold hands 🙂 ). His buddy Bob would be taking him places, while Casey would go with Reagan. I knew Casey would be fine and she was beyond excited to go.

Rob, though – I had serious doubts. Especially since they would have to wait at their day hab until Bob and Reagan were ready and most of their friends would have left. But – Rob was awesome! He waited for Bob and never got anxious at all. Now, he gets so excited when he knows Bob is coming! Another big step of independence for him!

To anyone outside an autism family, these things may seem not worth mentioning at all. To me, they are huge steps that show the continuous progress both Rob and Casey are making. It seems every day one or the other shows me something else that they know or can do that I didn’t know about. I love being pleasantly shocked by this!

There were so many years that I doubted either of them would be able to do anything or go anywhere without me gripping tightly to them and avoiding so many places so I didn’t set off Casey’s sensory issues or his anxiety. We were somewhat isolated from everyone but close family and I expected that would continue.

I share these little things to give each of you hope that your difficult days will end, too. Not that we don’t have….umm… interesting… days at times, but not like we used to. If this lock down would have happened when Casey was little, she would still be screaming (snow days were hell – she screamed bloody murder until her regular time to come home, then she slipped right into her after school routine). Now, she is giggling about walks in the park and coloring eggs on Saturday.

I hope all of you are safe and that your loved one with autism is handling this massive change without being too upset. Please take care and look for your bright spots every day! 🙂

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Autism, The Birthday Girl and Slightly Different Traditions

Autism, The Birthday Girl and Slightly Different Traditions

I’m actually having a hard time believing my sweet little girl is 32 today! No, it doesn’t make me feel old – just seems so odd to think about. She has such specific traditions that she wants for every birthday that I’ve been worried all week about her special day.

We always have special doughnuts for breakfast on birthdays, but I had no idea earlier in the week if I would be able to get to the store to get them so I asked her if it would be okay if we had them for breakfast on Wednesday – and she laughed and said yes! That is huge!! If you could have met the little girl she used to be, you would know just how big this is. You simply do not change routines – ever. And now, look at her! She’s okay with such a huge change to a day she looks forward to all year! (I did buy a little bag of powdered sugar doughnuts, just in case! 🙂 )

The birthday girl (or boy! 🙂 ) always gets to choose where we have supper from on their day. Another cause for stress for me all week – would the drive-thrus still be open today? (In Ohio, everything is closed for inside dining) Luckily, they are and she will get the Burger King she has talked about for a month. I have no idea why she is so excited about BK – we can practically see it from our house. It’s not like it’s some place we never go to! 🙂 But – Mandy will be picking it up for her soon and she’s over the moon excited about her grilled chicken sandwich! 🙂

Usually, my parents come over for dessert and to watch her open presents. They aren’t coming tonight and she seems to be okay with that. She has asked, but when I told her they have to stay home, she just giggled. (It could also be easier, because she knows their present for her is here! 🙂 ) We are going to video call them so they can still be part of the evening. We all need to do our part to stay away from each other and while I don’t think Casey or Rob understands why, they seem to be okay with it for now.

Last year, Casey chose a pie instead of cake for her birthday – we were all shocked! Cake and ice cream are just her things – every time she hears about a birthday, she wants to have cake for that person – or make sure that they are getting one. This year is the same – she chose pie. We do have to put candles on her pie and she sings Happy Birthday to herself as we sing. I’d like to know what she wishes for, but I don’t ask. If you say a wish out loud, it won’t come true! 🙂

I was looking through a box of pictures this morning and it just hit me again how far she has come. How different she is than even a few years ago. While she does still have certain issues, even those can often be worked through before they become huge problems. On her first birthday, I remember people saying how she liked being in her own little world – several times, as she would rarely look at people when they wanted to take her picture. Or really seem to care whether we were there or not. Some days, I wonder why I didn’t realize she had autism then. Except that no one knew anything about it 31 years ago.

Just now, she asked about going to Grandpa’s house tomorrow for his birthday. I had to tell her no, that we could go another day and she laughed and said another day! I am just so proud of her! She may not understand completely why everything has changed in the last week, but that she has taken it in stride this far is beyond my wildest hopes.

I want you all to remember how far she has come when you have bad days – those days when you are beyond exhausted and just don’t know what to do anymore. You have no idea how far your child will go – don’t stop dreaming and hoping and working. I can’t promise your child will accomplish everything, but I know if you never give up hope and have faith, one day, you will look back and see how far they have come, too. It may not look like our journey, but it will be amazing to you. 🙂

Be safe, everyone! 🙂

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Autism and Illness – The Sound of Silence

Autism and Illness - The Sound of Silence

Let me say… I’m always ready for a few minutes of quiet – no long black train, no stomping up the stairs, no music blaring, no long repetitive sequences of words. In the last week, I’ve gotten lots of quiet moments and have been worried to death.

Last Sunday, my mom gut told me Rob wasn’t feeling right. I couldn’t pinpoint what was wrong, as he was eating and drinking like usual. No rubbing his ears. But, I knew something was going on. By late afternoon, he had a fever. By mid evening, his fever was over 103 and he still couldn’t tell me what hurt.

So I went into panic mode. I gave him ibuprofen, popsicles and cool rags for his head (which he hated and threw off as soon as I turned my back!). I talked to mom and Mandy and cancelled our plans for Monday. And I tried to decide whether to take him to the emergency room. (he had a seizure when he was little from a high fever – I’ve always been terrified it would happen again.) I paced from his room to the living room where Casey was on repeat “Robbie’s sick. Robbie’s sick. Robbie’s sick.” I took a chance and asked her if she knew what hurt Rob. Then she started coughing, but not too much.

His fever wasn’t coming down, so I put him in the shower. I was surprised he got in as I knew how bad he was feeling. I said again “Tell me what hurts.” No response. “Show me what hurts.” Nothing. Just a completely miserable looking young man.

His fever came down to 101 after the shower. He ate his snack, took his pills and went to bed. Casey kept telling me she was going with Regan to Odd Lots and to get a frosty Monday. And she coughed.

By Monday morning, you guessed it – they were both sick. I called the doctor and said I thought he had an ear infection and she had a sinus infection. We had an appointment quickly.

The nurse practitioner took one look and said she wanted to swab them for influenza. I laughed as there was no way either of them would let anyone put anything up their nose. As proof how bad he felt, Rob never moved when the nurse swabbed his nose. Casey jerked away, but the nurse did manage to get a swab.

In ten minutes, we knew. Influenza A for him. Hers was negative, but the nurse said she was sure she had it, too, but in the earlier stage than him. My busy planned week came to a stand still. They were both contagious. I wondered when I would get it.

They slept all day Monday, through the night and into Tuesday. Rob would eat and drink, but she refused. By Tuesday evening, his fever was 103 again and she was in danger of getting dehydrated. I wondered if the hospital would put them in the same room as I paced from one room to the other. (yeah – I know, but I was tired and stressed and thinking worse case scenario).

I’ll admit it. I really didn’t like autism for a few days. I needed to know what hurt, what I could do to help them feel better and thanks to autism, they couldn’t tell me. I knew I needed to watch him for an ear infection and both of them for pneumonia. She was still coughing. He rubbed at his ears. And I paced and worried and mumbled not nice things about autism under my breath.

Before anyone gets a burr under their saddle, I’m not saying I was upset at kids at all. I just got irritated at autism – it was preventing me from helping my kids and I was feeling so helpless. I hate that feeling. I sat and wished he would long black train. I wished she would stomp up the stairs. I wished the quiet would go away. (That proves how stressed I was – to wish for hours of long black train! 🙂 ).

Thank God, both their fevers finally came down late Tuesday and Casey even took a few sips of juice. They slept off and on all day Wednesday and Thursday. We even had a snow day Friday so I didn’t have to miss any more school.

Casey is talking about going with Regan Monday and riding the shuttle to Hopewell. Rob hasn’t said a word. I just keep hoping they are on the mend. They are both sleeping more than usual and aren’t talking much. Eating is still hit or miss and their coughs sound nasty. It isn’t a constant cough, but it hurts me to hear it.

He finally mentioned Hopewell this morning. I asked if he wanted to go or stay home with Mommy again. He said Hopewell, but then coughed again. The doctor said it would be probably a week before they started feeling like themselves and that secondary infections were a concern, especially since autism prevents both of them from telling me that anything hurts. Today is a week.

I wish I knew how they really felt. They are moving around so I guess tomorrow we’ll try to get back to our normal and let them go. They were both upset last week that they didn’t get to go with Bob and Regan after Hopewell and Rob missed his aquatic therapy. Thankfully, the hospital rescheduled him for tomorrow. I just have a feeling that they will both be exhausted by tomorrow evening. Unless their fevers come back, they will go. And I’ll keep my phone close by in case they need to come home early.

Last week just proves again to be careful what you wish for. I often wish for a few minutes of quiet, but when I got it, I couldn’t enjoy it. I hate it when any of my kids are sick, but at least Mandy can tell me what hurts and if she needs to see the doctor. With autism, it’s just a guessing game and while I’ll admit I’ve gotten pretty good at guessing, I don’t like it. I want to help them feel better, not wonder if I’m doing the right thing.

We’ll see tomorrow afternoon if I guessed right about sending them back to Hopewell. I hope I am. I wish they would just say they are too tired to go. Or that they ache. Or that their head or chest hurts. Maybe some day they will – Rob will tell me at times when his ear hurts and he needs to see the doctor. Small steps. And I’m proud of every little step they have taken.

Stay well! Disinfect. Wash your hands. Avoid people and stay home! 🙂 🙂

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Autism – Why are You Sorry?

Autism - Why are you Sorry?

A few days ago, I was at an event doing a story and three different people asked if I had kids and how old they were. I told them that I had 3 – all adults and that two had autism. And it was like a light was flipped off. The “Oh I’m so Sorry” pitiful look came across their faces and I seriously wanted to smack them all. Why in the world would they be sorry for my amazing kids?

I understand that when people don’t know what to say, “I’m sorry” is an easy go-to phrase, but really, it’s annoying. I’m not sorry for my kids and they wouldn’t want anyone’s pity (unless it was possible that along with the pity came some French fries! 🙂 ) They are amazing, just the way they are. I am one proud as heck mama and they know it. We have all worked darn hard to get where we are – and we don’t need anyone’s pity because of that.

The truth is – maybe I feel sorry for the parents who lose childhood magic in their home when their kids grow up. I can’t imagine how boring holidays would be without the magic of Santa coming – the eyes that twinkle and the giggles at the very thought of his visit. How boring Halloween would be without the difficult decision of what costume to wear and what candy to hope for? What about an Easter basket that magically gets filled by a giant bunny while they are asleep?

The parents that feel sorry for me don’t get to experience the pure joy that a waterfall can bring or how a long hike in the woods can be a journey worthy of a novel. They don’t see the excitement that a new box of crayons can still bring and can’t hear the giggles that Elmo can cause. Their children will grow into adults that worry about jobs and houses and bills. My children grew up to see joy in the world.

It’s not that they are always happy. We all have days that the world is a tough place, but we work through it together. I’m still one of the people that they completely believe in. They will never outgrow wanting to spend time with me (though they both love going places without me, too! 🙂 ). I’m one of the few people they completely trust. Why feel sorry for me about that?

Yes, we may have different challenges than other people, but that doesn’t mean our challenges are tougher to live with at all. It means that we adapt – we change – we do what we need to do. Just like every other parent in the world. Every family has its own unique challenges that others can’t understand. That doesn’t mean we need or want your pity.

Instead of pity, why not ask how the kids are doing? Ask if they are happy or what they enjoy doing. Ask about them – just like you would if you were talking to any other parent. Save your pity for when we can’t see it, because I’ll be honest… some days, some exhausting, rough days.. when I see that pity, it just makes me want to cry. And I don’t need that. I would much rather tell you where Casey volunteered this week or that Rob tried another new food.

I would much rather tell you that Rob doesn’t need to rip magazines all the time so his anxiety must be under control. I’d love to tell you how Casey loves to sing and can’t wait to be in the talent show again this spring. Or I could tell you about the Lego designs Rob builds or the things Casey paints. Fun things are so much easier to talk about. I’ll listen to you brag about your children and I’ll brag about mine.

Save your pity for someone who may really need it. Or, instead of feeling sad for us, get to know us and be our friend. We can always use new friends! Ask questions. Smile. say hi to Casey and Rob. They truly aren’t scary (I always laugh when people ask how dangerous they can be when upset. What can I say? I have an odd sense of humor at times! 🙂 ) Just because they have heard of someone with severe behaviors, they often assume every person with autism has those behaviors. Cause, you know, everyone is exactly alike, autism or not. Ugh.

So, if you are reading this blog just because you are interested, remember to save your pity. Be our friend. 🙂 If you are a person who see that pity face, remember people don’t know what to say at times, so don’t smack them. 🙂 Instead, brag about your children, just like I do! 🙂

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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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The Adult with Autism

The Adult with Autism

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Autism and Mood-Swing Moments

Autism and Mood Swing Moments

Autism is nothing if not a way to keep me on my toes. While most days are full of happy surprises (Rob reading out loud – helping with dishes, Casey naming constellations) every day, some days, I get a shock and not so pleasant moments pop up. One of those happened Friday evening.

It had been a long week and I was tired. Casey seemed happy when I got home and we ate supper. Not too long after, she screamed. I jumped up and ran to her to find her sobbing. When I asked what was wrong, the screams started again only this time, she was pulling at her hair, too. Then she was crying again. She wasn’t able to tell me what was wrong – only switched between crying and screaming.

I was finally able to distract her with a Sesame Street paint with water book. She painted for a while, then came outside on the swing with me. And started crying again. I finally learned what the problem was – she wanted to go somewhere and that person wasn’t willing to get her. And she cried. And I tried desperately not to show my anger but only to concentrate on helping her calm down and feel better.

So we slowly pushed the swing back and forth and I rubbed her hand. I knew that too much talking wasn’t going to help. When she had been calm for a few minutes, I started talking about her Halloween costume (she wants to be Cookie Monster and for me to be Elmo 🙂 ) and how we could go to Hobby Lobby and get a blue t-shirt, tulle material and googly eyes for her costume. We talked about all the details – she needed a blue shirt and “funny” material. And big eyes, but no nose.

We needed to make cookies for her basket and a headband to put more tulle on. She was going to say “Me love cookies” all day while she was dressed up like Cookie Monster. Finally, finally – she was laughing again. She giggled at me being Elmo and she wants Cory to be Big Bird, Robbie to be Bert, and Mandy to be Ernie. Even today, she is laughing at her plan. (I have explained that Rob, Cory and Mandy may not like her idea, but so far, she doesn’t seem to care!) I’ll be Elmo – that’s easy enough and I can wear it to school, too. 🙂

But, Friday night, she cried a lot, even after we talked about good things. She doesn’t understand some things and I can’t explain it in a way that would help her. Rob doesn’t seem to care anymore, but Casey asks. Usually, I can distract her with a walk or a trip to the Dollar Tree or to Mandy’s. That night, it didn’t work. And it made me even more resentful of people who only pretend to care about their feelings.

Yesterday, she seemed better. We went for a long walk and she got to have spaghettios (yuck!) for lunch, with a cookie after. She was excited to go to Mandy’s and watch the dogs play while she sat on the swing. But I worry about later this week – when will she finally understand and stop asking for things that aren’t going to happen? Why do some people think only of themselves and not others?

This was one of the times that I resented autism. I don’t resent the kids – I resent that autism caused the communication problem and Casey wasn’t able to tell me why she was mad and sad. I resent having to watch my beautiful daughter scream and pull her hair out because she can’t tell me what’s wrong. It’s a hard thing to watch – I feel so helpless and I just want to scream and cry, too.

But, unlike when she was a child, she was able to pull herself together and calm down in only a few minutes. It took longer to help me understand the problem, but we did it – together. Just the way it will always be for us. We will live the roller-coaster of emotions and we will keep right on loving and laughing (sometimes, after the tears, but it still counts, right? 🙂 ) Tomorrow, it may be Rob who is frustrated and crying (he rarely screams – he just loudly long black trains with a strange, deep yell at the end that lasts for almost a minute).

I may be used to the mood swings, but I can’t say that I like them at all. Especially when they are finally laughing, but I know that chances are, the screams are not over. I can see it in their eyes. Just like you can see in anyone’s eyes when they are stressed and upset. I just wish it was easier for them to tell me when something is bothering them. We’ve come so far – maybe one day they will have that ability!