Category: autism adult

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Autism and Prom – Deep Thoughts and Fun

Autism and Prom - Deep Thoughts and Fun

Casey looks forward to Prom night for weeks. This year, she went dress shopping with Mandy, Grandma Rose and me. She said she wanted a purple dress for weeks and I hoped we could find one that she liked. After several stores, she grabbed a navy blue dress with a yellow jacket. I reminded her about wanting a purple one – I just had a feeling she would get home and ask for a purple dress. (You all know how her autism causes her to stick with original plans! 🙂 ) She insisted and we found yellow shoes to go with it. She was thrilled all the way home.

Rob said “yes, please, no fanks” to a new shirt. I would love to see him really dress up, but that’s not something he could handle right now. So, I let him wear black windpants and a new shirt – with sleeves. He is willing to put the shirt on (I buy a t-shirt type shirt – nothing too uncomfortable) for pictures, but once he decides he has posed for enough (and that’s always before Casey has decided enough have been taken! 🙂 ) he wants his old shirt on. This year, I had Mandy put it in her car – just in case.

Mandy helped Casey with hair and make-up. Casey is so serious for this – everything has to be done that was done the year before. Rob wants to be left alone until he has to put his shirt on. We took so many pictures and he is smiling in many of them. Mandy made him laugh – he can never get enough of her. 🙂

We danced for a long while. Rob joined us a few times, but the twirling lights are just too tempting. He loves to lay on his back on the bleachers and just watch the lights. Casey has finally stopped her running/leaping and if she isn’t dancing with Mandy or me, she just stands and watches the other dancers. Mandy needed to leave after an hour or so and I sat down to watch, too.

It had been a long day and I was tired. I was happy to be there – happy that the kids were having fun – happy to be dressed up with all of the kids. But – I was sad, too. It’s hard to watch a big group of people having fun and dancing with their friends when mine choose to stay on the edges. I know Rob doesn’t want to be in the group – but maybe he does want to fist bump a friend like he saw others doing. Maybe he sits on the bleachers because dancing with his mom or sisters is not “cool.” Maybe he would like to line dance with the guys he knows that were there. Maybe… maybe… maybe….

Casey stays near the edge of the dancers and never takes her eyes off of them. I wonder what she is thinking. Is she wishing she was dancing with a guy? (Tho, based on what happened the last time a guy tried to get her to dance, I’m going to say that’s probably a no! 🙂 ) Is she wondering how to join the group? Is she trying to learn the dances? Does she feel left out? I don’t know how to help her. No one else there has their mom dancing with them.

Those that need help have staff with them. (I saw so many amazing staff people that night – thank you for everything you do!! It’s obvious that they love what they do!) They don’t have mom – and I’m sure being with a pretty staff person is much cooler than being with mom! But maybe Casey and Rob don’t even think about things like that. And I feel even more tired. I’m ready to go home and be done with the thoughts.

Then Rob jumps up and comes to me. He leans close and grabs my phone, finds the camera and makes faces for selfies with mom. Though he isn’t laughing in the pictures, he giggles every time he sees the goofy faces he makes. And I know that if he was feeling like being with mom isn’t cool, he wouldn’t be hugging me to do more pictures. 🙂

I wish autism wasn’t so confusing. I wish I knew what they were thinking and feeling. I wish I didn’t have deep thoughts during a fun time. I wish I wasn’t so tired at times. I wish …. I wish… I wish.

We all have those wishes, don’t we? Maybe it’s wishing for a friend for your child. Or for your child to try a new food. Or for an awesome teacher for your child. Or for a job your child enjoys. Or for the money to try a new therapy. And the list goes on and on.

I suppose it’s good that we have those wishes. As long as we can dream for our kids, we will keep reaching for the stars with them, for them. We will find the strength to fight for what they need – just so they might reach those dreams. Once we stop wishing, even for our own lives, we stop growing. We stay in the same spot. No one can be happy without those wishes and dreams.

So please, keep those dreams for your child. You have no idea what the future may hold!

And – Casey and Rob both said the prom was fun. 🙂

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Autism and the Routines we Live With

Autism and the Routines we Live With

I’ve been trying to decide all day what I want to write about autism this week. Usually, an idea pops in my head and I run with it, but this week, I have so much going around my brain that nothing is sticking. Until Rob came in to turn on the other lamp in the living room – now I know! 🙂

I’ve told you before about some of the routines we live with. Many are obsessive/compulsive – others are just the way Casey or Rob think life should be.

Rob seems to have more of these quirky “needs” than Casey, but last night, one of her quirks almost caused a major meltdown. She got out of the bath and was thrilled to have a cupcake and ice cream for a snack. (Thanks, Kenzie!) She was giggling – and then she wasn’t. She slapped her iPad and kicked her feet. I knew she was getting mad, so I calmly asked what she needed. She couldn’t or wouldn’t tell me. I was tired and not in the mood to deal with a screaming meltdown.

I kept asking and talking to her about what she would be doing this week. Finally, I said I had something to write on her calendar and she took off to get it. When she brought it to me, she pointed to today. Nothing was written on it – and I knew instantly what the problem was. She was going to Anna’s dance recital with my mom and I hadn’t written it on her calendar! I have no idea how this happened as she religiously brings that calendar to me. As soon as I wrote dance recital on it, she was happy and giggling again.

That just shows how quickly moods can change around here. It’s exhausting some days to try and think of everything they need to have done so they can feel safe and happy. Her meltdowns are few and far between now, but when they occur, it’s ugly. Thankfully, she usually gives me a warning that she’s getting upset before she is out of control – but not always.

Rob firmly believes that if the front door is open (which can only happen after a certain point in his mind) for fresh air, the ceiling fans in the living room, dining room and kitchen have to be on. And if one lamp is on in the living room, they both have to be. If the ceiling fan is on at Grandma and Grandpa’s house in the living room, the one in the dining room must be, too. I can try to get him to turn one off, but it causes him so much anxiety, it’s just not worth it.

He has to wear certain pants and shirts together. She mismatches whatever she wants to wear that day. (some days, I make her change. Other times, I figure she needs to be able to make some decisions on her own.) Pills and snacks need to be waiting when they get home from Hopewell and when they get out of the shower. It’s funny, but sitting here writing, it’s hard to remember what exactly some of our routines are. I do them automatically and without thinking about them.

Tonight is another example of their need for routine. Since Casey took a bath before she went to the dance recital, I told her she could just put PJs on instead of taking a bath. Nope – she has to have a bath. I said okay, but we don’t need to wash your hair so don’t get it wet. Yeah – that didn’t go over. And Rob kept asking about her taking a bath, because he only takes a shower after her. Honestly, if I tell him he needs to go first, he will, but he rushes through it so he can see if she is going to take her bath.

Every family who lives with autism knows about the need for routines. People look at me like I’m crazy at times because I hate to get the kids home much after 8. They are adults – I get that, but if we get home too late, they won’t relax and go to sleep. And my late evening turns into none of us sleeping until 1 or 2 in the morning. Sorry, folks, an extra 30 minutes or hour with friends is not worth that to me. I’m not spoiling the kids – nor am I letting them “rule” me. I am simply doing what is best for us. You don’t have to like it, but kindly keep your negative comments to yourself.

Our routines are such a big part of us. Like I said, every family with autism knows exactly what I mean and many others try to understand. It’s so hard to explain to people who don’t live with autism just what our lives are like. I can’t honestly say I know what my autism mom friends lives are like. I can picture some of it, but their children are so different than Casey and Rob, I can’t know exactly. I can, however, sympathize and laugh with them. (Yes, we laugh at our lives and our kids – we are not being insensitive to their needs – we are letting off steam with people who know how crazy nuts our lives can be!)

Without our routines, Casey and Rob (and I!) would be extremely anxious and upset. We do things that appear odd to others because we need to. Autism is funny that way. 🙂 Once we find a routine that works, it’s nearly impossible for me to bring myself to change it. I wait until one of the kids decides it needs changed and then we find a new one.

Autism is definitely never boring! 🙂

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Autism and Hope – Never Lose It!

Autism and Hope

Anyone that follows our Facebook page may have seen that Casey sang in our county board of developmental disabilities talent show a few evenings ago. She won one of the awards – she was happy about that, but for her, just the singing is enough. And that she got a milkshake after! 🙂

She was so excited that she got to buy a new shirt to wear. That night, she couldn’t stop giggling at supper and kept looking at me for the signal that it was time to take a bath and get ready to go. We had to blow her hair dry and use “fluffy” stuff (mousse) in it. She couldn’t stand still from excitement. Even Rob was excited about going!

When we got to the school, Rob chose their seats and Casey bounced in her seat to watch people come in. She was going to be the last one to sing before intermission. Mandy and Cory came and she bounced harder. (And Rob had to jump up and rub Cory’s face – he had shaved his beard! 🙂 I’m still waiting for Rob to tell me he wants his face like Cory’s!

I was taking pictures for the newspaper, so I wasn’t sitting with the kids. As I watched the other performers, I kept checking on them and they were always looking right at the stage and enjoying the music. When Casey’s turn came, she jumped up and ran to the stage with a big smile on her face. She grabbed the microphone and looked at me as she waited for the music. As soon as it started, she started swaying back and forth and got really serious. This year, she really belted out her song so everyone could hear.

It’s funny. She loves singing on stage but those who know her well can see her nervousness. She doesn’t know what to do with her free hand and it moves constantly from rubbing her shirt to playing with the snap of her pants to going in her pocket. She loves what she is doing, but she is scared, too. And is brave enough to do something that scares her because she loves it so much. I wonder how many “typical” people can say that? How many of us really want to try something we love, but we are afraid to fail so we never try? Those performers that night were afraid – and they did it, anyway. They had all some type of disability, but they conquered their fears to try. We could learn something from them!

When she was finished, she didn’t wait for the applause. She smiled a beautiful smile, ran down from the stage and back to her seat – still excited and happy. And thinking of the milkshake she was sure she would get when it was over.

When they started announcing the winners, she was still smiling. I truly don’t know if she cares about winning (I know some of the performers do) but she was happy to go get her award and show everyone. She loved being in pictures and couldn’t stop smiling. I still think some of that smile was knowing that a milkshake was coming.

Later that night, after we had all settled down, I thought how far she had come. I know I tell you this often, but never, ever give up on your children. I don’t care how old they are or how severely they are affected by autism. You never know where they might go!

Who could have known that the little girl who screamed for hours at a time and beat her head on everything would one day be standing on stage singing a song she loved? The little girl who couldn’t sit in a gym with a crowd of people was now sitting in a huge crowd. That sweet child who couldn’t wait 10 seconds for help without screaming sat for 45 minutes waiting her turn to sing. The child who had only a few words was singing. (Though, to be honest, she was singing as a toddler, even when she couldn’t say Ma-Ma.)

And Rob…. he hates crowds. As a child, he had to have head phones on to be near crowds of people. He couldn’t wait for things to start as his anxiety would get to be too much and he would run away. He hated flashing lights and loud music. He paid little attention to Casey (even thought he followed Mandy everywhere – and still does! 🙂 ) He is learning to message people. He wanted to be there for Casey – to cheer her on – to hear her sing.

And I cried happy tears remembering. I remember the dark days when I was sure my life would be nothing but screams and bruises and anxiety and sleepless nights. I didn’t really have the time or energy to dream for either of them. I was too busy dealing with schools and IEP’s and therapies and everything else life threw at us. I didn’t give much thought to the future – or at least. not much farther than the next year’s IEP.

I know that your child may never sing on stage or sit in a crowd. (Honestly, Rob only did this for Casey!) He or she may not have a picture in an art show. But – your child may be the one to write the music – or the book – or the movie. Or they may the one to design a new bridge or a computer game. The point is – you don’t know what the future may hold. It’s hard to look ahead when right now is exhausting you. I get that. I really do.

I’m just asking you to not give up. Dream for your child when you can. Plan for your child every day. Sometimes, it’ll be one small step forward and three steps back. I get it. Don’t lose your hope – your faith. I’ve been told before to “fake it till you feel it” and it does work. Make yourself dream and feel hopeful. And maybe one day your child will be the one singing “You’ve Got to Stand for Something” in front of her family and friends. 🙂

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Autism and Adulthood – It Doesn’t End at 18

Autism and Adulthood - It Doesn't End at 18

I’ve seen several comments lately about services for people with autism after they become adults. It seems that many have the idea that once a child reaches the age of adulthood, the autism goes away and services are no longer needed. It is a terrifying reality.

When children are diagnosed, schools (or early intervention programs, depending on the age of the child) are responsible for providing the child with the services they need. The speech therapy, occupational therapy – whatever the team decides they need are arranged and usually provided by the school district. Parents can work, knowing their child is safe (usually!) at school.

But then. the child turns 18. In some states, the schools still have to provide services for that child until the age of 22. I know some families have taken advantage of this in my area because their child enjoyed school. For us, finishing school was a milestone. Casey participated in her class graduation, but Rob didn’t. They both received a diploma, not a certificate of attendance. (Thanks to hardworking teachers!! 🙂 )

When Casey was a sophomore, we began to talk about what she would do after graduation. Our county board of DD had a sheltered workshop and I knew many of the people who worked there. She visited a few times and seemed to like it. In her junior year, she went to the workshop on Fridays and the high school the rest of the week for the first semester and went two days a week the second semester.

Her senior year, she started at both places. The first semester, she went to school Monday, Wednesday and Friday and the workshop Tuesday and Thursday. The second semester, we switched and she was at the workshop more. When she graduated, she began attending the workshop full time.

Rob didn’t need as much transitioning because he was already familiar with Hopewell from Casey being there. He started in the second semester of his junior year and we followed the same schedule as Casey his senior year. When he graduated, he went with Casey full time to the workshop.

They both enjoyed the opportunities there and even made a little money doing piecework. Neither of them understood the idea of working for a paycheck and despite my best efforts, the check they got never meant money to them. Money (besides 3 quarters every morning!) still means little to them. They both know they need it to buy what they want, but have no idea how to get it (besides Mom’s purse! 🙂 )

We are lucky. There are several day habs in my area that provide day services to adults with special needs. I haven’t checked into the other ones, as the kids are happy where they are. Some offer small jobs where the adults can earn money. We also have a county board that does their best to make sure adults with special needs are taken care of and their wants and needs fulfilled.

Again, I am lucky. Casey and Rob have no desire for a job. So many adults with autism want a job – to have a group of friends – to make their own money – to live on their own. Casey and Rob do not have these desires. To be happy, they want to see people they love. Go for hikes with Tracie. Go shopping. Volunteer. Things that are easy for me (right now, anyway!) to provide.

But for many adults with autism, obtaining what they need is a bigger fight than getting services in school. Social security benefits can be difficult to get. Guardianship cases have to be decided. Finding a place to live if living with family is no longer possible. Finding someone to stay with the adult while families work or need respite is hard. (My parents and Tracie are my kids’ respite providers – I worry what will happen when my parents are no longer able to help. Finding people you can trust to be in your home with your child is scary as hell.) Trying to get waiver services. This list goes on and on and often, there is no one to help the family get through the process. (We have a service and support person through our county board of DD).

Sometimes, the problem isn’t money, but that there are simply no services available. There is a desperate need for providers, both in residential centers and home based. It takes a special type of person to work with people with disabilities. Many think they can and find out quickly that they can’t handle it. I often think I should get my certificate to provide services, but I’m not sure I can handle it. When I worked in the preschool for children with autism, there were many days that I came home exhausted and had to deal with autism at home, too. I loved my job and hated when it ended, but there were some tough days. I’m just not sure I want to do that again.

Some families are just looking for a place for their loved one while the family is at work. They don’t care about money – they just need a safe place. Not working is rarely an option for most families, especially if the adult with autism is not getting any disability benefits. Fighting for school services is nothing like arguing with Social Security that your child is an adult and that the autism did not go away. You have to prove it. You have to find doctor reports from when your child was much younger. If you are just starting on this autism journey, please, do yourself a favor and start a file. Save everything – you will need it someday!

My advice is to get help from your county board of developmental disabilities. If you don’t have one, contact your state board. Start making plans while your child is still in high school and you have that team to help you search for services. Find a lawyer to help with guardianship. Get on waiting lists for services, even if you aren’t sure you will need them. I know the last thing you want to do is have something else to deal with. You are tired. You are stressed. You are just done with autism.

But, if you don’t start planning early, your child will graduate and suddenly, you have nothing ready. You still have to work and you have no one to stay with your adult child. Trust me – a little stress now is better than a huge stress later. Get help before you need it. Look for places for your child to go. Ask other parents what they do or where they got help. (Often, other local families are your best source of information – a sort of “been there, done that” group!)

Although the future scares me a lot, I try not to dwell on it. Instead, I try to be more like Casey and Rob. Happy with simple things. Laughing for no reason. Being honest. Getting excited about Santa and the Easter Bunny. Pure joy at seeing their favorite people. Enjoying helping other people. Adults with autism can bring a special magic to the life of anyone they are around.