Autism and Much Needed Life Skills

Autism and Much Needed Life Skills

I just read a blog about how parents (both typical and special needs) do not need to teach their children life skills. Honestly, I was shocked as I am one who believes every high school senior should take a Life Skills class that includes meal planning, budgeting, how to buy insurance, get utilities and balance a checkbook, for starters. Mandy has often told me she wished she had had a class like that, even with me teaching her skills at home. When it comes to autism, life skills seem to matter even less and it drives me crazy.

Will my kids ever live on their own? Probably not. BUT – wherever they live, they can help with household chores. Will they like it? Maybe not, but I don’t particularly like to laundry or cook, either. I do it anyway. And they help. They may not like it, but they do it. (When I ask her to do something, Casey often says “no” as she is getting up to do it! 🙂 )

We were so lucky. The teachers (Thanks, Stacey, Karen, Barb, Polly, Beth, Wendy, Jerri and so many others! 🙂 ) they had believed in life skills, too. I understood the need for some of their school lessons – math, reading, spelling. Rob enjoyed learning about states and Beth encouraged that. But even more than that, I wanted them to learn skills – real life, useful skills. When they were little, I had no idea whether they would ever have jobs, but it didn’t mean they couldn’t help at home.

It wasn’t easy and I had to modify what they did with their sensory issues. Rob couldn’t vacuum. It was simply too painful for him. Even though Casey had auditory issues, she liked to push the sweeper. (Usually with one finger pressed into her most sensitive ear). He liked to dust and wipe windows and mirrors. She enjoys folding laundry. Neither likes doing dishes (that may be hereditary and not autism as I hate it, too! 🙂 ) We spent a lot of time practicing and we still do with some things. Did I get tired of taking so long to do simple chores? Sure – many times. But it was important that they knew.

There so many things your child can help with around the house. What mine can do may not be possible for yours. I limit some of their help, for safety reasons. Rob has driven the riding mower (without the blades moving!) in slow speed several times and he seems to like it, despite the noise. However, I am walking beside him and reminding him to turn and to stop. No way would I trust him alone on it. Casey hasn’t even attempted as it’s not something that interests her.

They both know how to use the microwave, up to a point. We have an old one with a dial on it. I’ve marked where two minutes is and they both know never to turn the dial beyond that. They don’t use the stove – they have no idea that they can get burned and are both too careless. Instead, they help me with the “prep” work and I put food in the oven or take it off the stove. Rob really likes helping with pizza burgers and using the griddle to make pancakes.

Tonight is a perfect example of their help. I had been trying to write and download pictures and technical issues were causing major delays. Supper was going to be about 10 minutes late (oh my God! Not in this house of routines! 🙂 ). When I went to the kitchen, they were both carefully watching and I said it would be ready faster if they helped. As I cut the potatoes, Casey put cheese and bacon bits on them and Rob poured drinks for everyone. While they finished that, I started the dishes. She got plates from the shelf and he got forks. And their smiles – oh! They are so proud to help! (and probably happy that supper was almost ready! 🙂 )

When they finish, they take their plates to the sink and push in their chairs. It’s not a big deal to them, but sometimes, people are so amazed by it. Truly, it irritates me. Helping around the house shouldn’t be a big deal to any child! That’s what being part of a family means – we all pull together for the greater good.

You will have to decide what your child is capable of. And every child is capable of something, if they have someone patient enough to work with them over and over until they understand. Will they always want to help? Of course not – any more than you want to cook every day or mow the yard, but you do it. They can do it, too. Find something that is safe – maybe fold towels? And relax your standards for how the towels are folded! Rob folds them exactly opposite as I do, but you know what? They still get rolled and put away and he’s proud that he helped me.

Casey doesn’t fold shirts that way that I do. He wipes mirrors in circles before he goes back and forth. She sweeps the inside of the room, but misses the edges. He doesn’t pick up everything when he dusts. He sweeps every spot in his room – she could care less about hers until I remind her. She half-heartedly makes her bed – he sleeps in a pile of blankets. No one can see her room upstairs and he always has his door shut. There are more important things to worry about.

When you are discussing IEP goals with your child’s team, be sure to ask about life skills. Your child may never need to know history or chemistry, but folding a towel is important. This is something you can work on with the school!

Rob and Casey understand they need money to buy things. They have no idea where it comes from, beyond my purse. They understand when I tell them they don’t have enough money to buy something, but not necessarily the difference in the price and what cash they have. Rob understands three quarters will buy him a coke at Hopewell and that’s all he cares about. He knows he needs to take money when he goes with Bob, but he doesn’t care how much. Casey will count her money, but she counts it all as one dollar. To her, ten five dollar bills is the same as ten hundred dollar bills. She knows they have different numbers, but no matter how I try to show her, they are still just “dollar bills” to her.

Please, I know it’s easier for you to do things yourself, but it’s so important for your child to learn! Just imagine their smile as they bite into a cookie they helped make or their pride when you brag they folded the clean towels for you. That’s what is important, not the time it takes to teach them. Every one can learn.

Autism and Elmo Tells the Truth

Autism and Elmo Tells the Truth

Did anyone else get to watch the Sesame Street special that was on TV last week? Elmo’s dad (I didn’t even know he had a dad! 🙂 ) helped him video call his friends because he was missing them so much. The TV screen even looked like a computer and the screen was split between Elmo and whoever he was talking to. Honestly, I only half-listened to it (I was using the quiet time for a marathon call with Tracie!) but it was a good show.

When we found out about the special, we wrote it on her calendar for Tuesday. I have discovered as long as she has something on her calendar every day, she stays fairly happy with being home instead of going to their day hab. Some days, I’ll be honest, what we are having for supper is all I can think of to write and she’s okay with that. She asked all day when Elmo would be on and if she had to wear PJ’s to watch. I told her it would be after supper.

Often, when we finish supper, she goes out to sit in the porch swing, but not that night. She went right to the couch and began her wait – of two hours! I told her I wouldn’t let her miss it – even offered to turn a timer on, but she stayed right where she was. At 7, she was ready, but she didn’t seem to be watching it as closely as I thought she would. She giggled several times, but was serious through much of it. When it was over, she jumped up for her bath and didn’t mention it again.

It wasn’t until the next morning that I found out just how much she had been paying attention. She asked about going to grandma and grandpa’s house and I told her we couldn’t. She laughed and said “Elmo says stay home!” Yes! Thank you, Elmo! She still may not understand why we can’t go many places, but since Elmo said it, she was willing to follow his lead. 🙂

As much as she wanted to be like Elmo, Wednesday and Thursday were a little off for both of them. He was louder than he has been in a long time and was stuck on his anxiety song. She had her “look” going on – the one that anyone who knows her well knows means she is getting upset and the situation needs diffused before she blows. Luckily, I was able to find enough things to distract her and by that afternoon, they were both back to normal – whatever that means at this point.

Casey has said she is going to Hopewell on May 1st. I have told her many times I didn’t think she would be going that day and have decided that we need to write cancel on her calendar for part of May, too. If that changes, it will be a happy surprise. I just think she needs enough warning that she won’t be going that day – or hell may come to our house that morning. I am so proud and amazed at how well Casey and Rob are handling this drastic change in our lives, but I’m realistic, too. They will reach the end of their patience.

It has been really hard for them to not spend time with grandpa and grandma and Tracie. They do get to see Mandy and Cory, but not often, and we don’t go to their house. I truly thought they both might be okay missing Hopewell for a few days. When Casey labeled this spring break, it seemed easier for them to accept. She is still calling it spring break – a “weally wong spring break” (that’s really long spring break! 🙂 ) Rob really hasn’t said much. He still spends time (a few hours a week) with his buddy from work, Bob (staff), and Bob has told him many times that Hopewell is closed and has taken him by the building to show him.

Casey is thrilled to spend time with Reagan, another staff from the day hab. Honestly, if it weren’t for Bob and Reagan, I don’t even want to think about what our lives would be like right now. Having those visits to look forward to bring such huge smiles. We also walk a few miles every day. As we walk by the roped off playgrounds, Casey says “dat’s silly” amd that she isn’t sick.

It’s hard enough to explain to a typical person the need to wear masks and how the virus can be shared before you even feel sick, but to Casey and Rob, it’s nearly impossible. She will look at me and say “not sick! good!” and I have to tell her again that I know she doesn’t feel sick, but we have to keep grandpa and grandma safe and stay home. (on a side note – my parents are remodeling their upstairs. Casey has decided the corona virus is upstairs at their house. No clue how she ever came to that conclusion! 🙂 )

I will be honest. As much as this stay at home stuff has disrupted millions of lives, it has been nice, too. (and no, I am not discounting the financial and health scary stuff!) Most days, by the time they get home from day hab, they need to decompress in their rooms until supper. I get home, start supper, clean it up and I’m ready to crash. This time together has allowed us to spend some awesome time having fun with each other.

Casey and I do crafts. Rob will paint, too, and I got to play with Legos with him the other day. (As long as I didn’t touch his favorite ones, anyway!) I love walking with them and talking – trying to engage them in things we see around us. Sometimes, it works, other times, I might as well be on the moon for all the attention they pay me. But, I keep trying – we aren’t too tired to keep trying! Some days, it’s Casey and I dancing around the living room while Rob watches us with a little grin and a “They are nuts” look in his eye.

If you missed the Elmo special, it is online and Sesame Street also has a ton of other free stuff. I’m sure not everyone is so enthralled with Sesame Street, so hearing Elmo talk about staying home and being safe may not work for everyone. But, it may be worth a try. Please, stay safe, stay home, stay healthy. Give yourself permission to cry or yell or sleep or eat junk food – whatever you need to take care of yourself. Your child is depending on you now more than ever. 🙂

An Autism Mom’s Thoughts on a Very Different Easter

An Autism Mom's Thoughts on A Very Different Easter

Holidays are special around our house. Birthdays, Christmas, Easter, Thanksgiving, Halloween, even Memorial Day and July 4th have their own traditions. And every one of them includes family and friends. The gatherings might be smaller because of autism, but we have celebrations. This last month has sure changed the way we follow our traditions.

Casey has a checklist in her head of every thing that needs done to make a special day complete. We colored eggs yesterday, the Easter Bunny came and left baskets and hid eggs. (By the way, the Easter Bunny should not hide eggs when she is mostly asleep… I hope we find the rest by Christmas! 🙂 )

Casey and Rob looked at their baskets, she looked for a few eggs (honestly, I don’t think she cares – it’s just what you are supposed to do!) and went back to their rooms. But not before asking about lunch at grandma’s house. Mandy and Cory are coming here for lunch, so Rob didn’t really care about not going anywhere.

What I have heard over and over is “grandma, grandpa coming here?” (way back when all of this social distancing started, we thought about having a cookout on Easter…we could be together, but apart) The weather simply isn’t cooperating for that idea and we need to protect grandma and grandpa. Casey is having a harder time with this. She will say “not sick!” and I try again to explain to her that she may not feel sick, but she still might get someone else sick.

She flips her head, sighs and stomps her foot. It just doesn’t make sense to her. As I write this, she is still smiling because Mandy and Cory are coming and she planned the menu (ham, baked beans, pasta salad, cookies, brownies and pie… Do you notice the sweet tooth? 🙂 )

What I want to say to her is that I want to see Grandma and Grandpa, too. I miss seeing my brother and his family. We are supposed to be laughing and goofing off – together – not texting Happy Easter to each other. I’ll be the first to admit – I really don’t mind staying home. When our lives are “normal” by the time the kids get home from Hopewell, they need to decompress in their rooms. They want to be alone for a while. And I have supper to make and laundry and… on and on…. Some nights, it seems like we barely connect.

But, since we are all home – we are walking every day (or as many as we can between rain drops and snow flakes!) and we are baking – making crafts – painting. We are just sitting on the swing and watching the birds and talking about Sesame Street or the Wizard of Oz. We are having long “talks” about fast food menus and where we have gone on vacation. We talk about who went to heaven and going to the zoo this summer (maybe!).

So, yeah, I’m missing my family and wishing we were all together. We have already talked about having a Casey/Grandpa/Jen/Jeff/Cory/Lacey/Anna birthday party/Lacey graduation/Mother’s Day/Memorial Day/July 4th party in July. I can only imagine the traditions that Casey will want to include on a day like that! 🙂 But, it won’t matter, because finally, we will all be together and acting like our usual goofy selves. I can’t wait!

I hope that when this is all over, I don’t fall back into my old habit of worrying about gatherings and how Rob will do. I hope I can just relax, grab the kids and go! I hope I remember not being able to see everyone and how little it matters if Rob is a little loud, as long as he is having fun. I’ll do my best, but I also know a lot of the worry depends on how tired I am.

I hope everyone has a blessed Easter with special traditions that are unique to your family! Be happy, be safe!

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! 🙂