I’ve been struggling with what to write about for a few days. I found my topic with the last ten minutes by talking to Casey and Rob about what they would like to do this summer. They taught me a lesson – again. I want to be more like them.
I’ve been thinking about trying a few long weekend trips – to a beach, to the mountains. Maybe Niagara Falls. Trying to work out details in my head for what sometimes seems like impossible trips.
But when I asked Casey what she wanted to do this summer, her answers were simple. Go hiking at Mohican (a state park). Go to a mall. Sleep at Grandma and Grandpa’s house. See fireworks. Have a cookout. Tie-dye shirts.
Rob wants to go hiking with Tracie. Ride in Cory’s truck. Go to a car show. Sleep at Grandma and Grandpa’s house. Go swimming with Mandy, Andrew and Tory. Go to Steak -n- Shake.
Simple, easy ideas. While I think they would both enjoy a few days away, that’s not what they dream about. They both stick to simple plans and are happy to do that.
I want to be more like them. I am, mostly. I love hiking (assuming I can walk by summer!) and going to the pool. But – I think about lounging on a sandy beach. Or wading in a mountain stream, too. I’ll admit – I get jealous at times at how easy it is for others to decide to go on a vacation and just go.
I try not to be, but sometimes, it happens. I wouldn’t be human if it didn’t.
On the other hand, my life revolves around a simple routine. One that makes us all happy. We aren’t constantly running here and there. Tonight, we had plenty of time to sit on the patio together and enjoy this gorgeous day.
Casey is swinging and giggling and talking about Kylie and Julie. Rob is just completely relaxed in a lounge chair watching the clouds and the birds.
Autism isn’t always this easy, but if they didn’t have autism, would I have evenings like this? Would I be too busy following a crazy schedule to appreciate just sitting?
I don’t know. I can’t imagine my life any way besides this. We are happy. We are healthy. We are together. What more can any mom want? I’m going to be more like them and look for the simple things in life.
I’m sure I’ve shared before that Casey loves to sing in our county board of DD talent show each year. This year, the talent show included a visual arts part, too. (The talent show was virtual the last few years.) I asked Rob if he wanted to paint one of his cars to display. He wasn’t sure, at first, but earlier this week, I told him if he was going to paint a car, he needed to do it. And he painted for nearly two hours – everything I could find that he might like. Honestly, with everything they deal with every day, Casey and Rob are much braver than I am.
Casey got up early Friday because she was so excited about singing. He wasn’t excited – he was concerned about taking his cars. He was worried that he wouldn’t be able to bring them home with him. Once I explained we would put them on a table and let people look at them and bring them home when Casey was done singing, he was okay with taking them. She was getting ready when he finally got excited.
And by excited, I mean, he asked every minute or so about Mandy, Cory, Grandma Rose and Grandpa Mack. I had to tell him over and over that Mandy and Cory would pick us up and that Grandma and Grandpa would meet us at the school. He was getting anxious again about taking his cars, but as soon as they got to our house, he grabbed the box and went out the door.
The gym was getting crowded, but they both happily sat down and waited. As we waited for it to start, I couldn’t help thinking how absolutely amazing it was to watch them. So many people knew them and I didn’t have to worry about them wandering off. They both walked over to say hi to other family members and came back. It doesn’t seem like that long ago that I wouldn’t have dared let them get that far away from me.
Even when it started getting noisy, they both kept smiling. And again, I thought how not so long ago, a crowd like this would have been impossible for either of them. Both would have been running away or yelling. Right then, I didn’t care about the talent show or anything else – I just watched the two of them sit together and enjoy themselves. Even when the lights got dark, they kept smiling.
Casey was the third one to sing and she had a huge smile on her face the whole time. the first time she did show, you could see how nervous she was. She didn’t smile and she didn’t look at anyone. Now, several years later, she smiled the whole song and looked around the crowd for the people she knows and loves. (I was sitting on the floor near the stage, taking pics of everyone and she looked at me often) She swayed back and forth as she sang and when she was done, she flashed an even bigger grin before she left the stage.
I heard Rob talking once or twice, but nothing very loud. He was watching the singers with a smile. (I wish I could get him to sing. He has an awesome voice, like she does, but rarely lets anyone hear him!) Listening to everyone sing, I thought again about how much they have changed.
Who would have thought the little girl screaming and banging her head because it was a snow day would some day be singing on stage? Who could have imagined that the little boy who went everywhere with ear protection and hated crowds when sit for over an hour in a crowd to watch his sister? Who could have dreamed that she would be able to listen for her name, go up on stage alone, sing and go sit back down? Who could have thought he would be able to go to the bathroom by himself and come back to us?
Autism is not an easy journey. Anyone who tells you that is lying. Some days just suck. And some days suck more than others. But – please – even during those days that suck, try to keep dreaming for your child. Many people that see Casey today comment that she has “easy” autism (yeah – no clue what that is, but I’ve heard it many times). Rob, on the other hand, makes people nervous. I guess his size and that he talks less than she does. So, he is “hard.”
I wish those people who say she is easy could have seen her when she was little and every single day brought a new struggle for her. Changes in routine, not being able to tell me what she needed, sensory issues – the list goes on and on and meltdowns were a daily part of our lives. Rob had his struggles, too – just different ones than she did, of course. When I had time to think, I wondered how we would make it. I knew I couldn’t keep doing that for years – what then? There were some black days.
And that’s why we want to tell you to have hope! Stay strong. Keep dreaming. We didn’t have a magic pill that took our struggles away. We just kept working at their needs and trying new things. I kept hoping for the best and reaching for stars for them. (No, I’m not some “Life is unicorns and rainbows” person – I made a lot of mistakes. I yelled, I cried. I said I was done. I cussed. I yelled and cried some more. But – we kept going through her yells, my yells and his squeals – that’s all I’m trying to tell you.)
As for the talent show, Rob won the “Most Unique Art” trophy and Casey won the “People’s Choice – Singing” trophy. They were both happy and excited. He put his trophy on a shelf in his room before he even took his coat off! She added hers to the rest of her singing awards. 🙂
So – never give up. Yell, if you want (preferably where your child can’t hear you). Cry, if you need. Cuss if it helps. But, never, ever think that your tough days will last forever. Only God knows what your child is capable of – keep dreaming, keep planning, keep your faith that tomorrow will be a better day!
When you are a parent, sometimes, you forget about all of the little things your child is learning every day. You think about the big things – first steps, first words, potty training and you forget to cheer when your child holds a door for someone or helps without being asked. When you are a parent of a special needs child, those little things are often what you notice first. With autism, you don’t take any new skill for granted. This was a week of little steps for us and this is one excited autism mom.
As many of you know, I injured my foot several months ago and am still trying to stay off of it and get it to heal. Things have been done a lot differently around here because I am simply not able to get up and down stairs or jump in the car whenever we want to. Casey and Rob have taken it all in stride and they have grown so much in their self-confidence and awareness of the needs of others (which isn’t easy for anyone, but when you add in autism… you get the picture!)
They are taking turns bringing the trash cans to the house after the trash is picked up. She is even more determined to help with the laundry and is even folding everyone else’s, too. He has been sitting in the living room with me to keep me company. They are taking care of their rooms with fewer reminders. Both of them carry things for me or will go get something if I need it.
Casey will be singing in a talent show Friday and, of course, needs a new shirt for it. I told her we would go shopping the week after her birthday so she could spend birthday money, too. My mom took us early in the week. I hated the idea, but I took my knee scooter, too, so I could keep weight off of my foot. (Crutches are not my friend! 🙂 ) Rob carried it out to the car and loaded it for me and at each store, he went right to the trunk, unloaded it, and brought it to me. (Well, there was one place that he was so excited to get in the store that he left the scooter behind the car instead of bringing to me, but hey – Dollar Tree is exciting, you know! 🙂 ) He put it away each time, too. I am so proud of him and he was proud of himself for helping me.
Casey carefully picked out the perfect shirt and a few others. She even put back the $20 pack of socks when I told her it was too much. He stood and made faces at himself in a mirror while he waited for her to finish shopping. He even agreed to purchase a new shirt for himself! And when we stopped to eat, it was amazing to see them both read the menu to see what they wanted and then tell the waitress. (He tries to get me to do it, but he will if I remind him that he can talk to her.)
Wednesday was a big one, though! They were supposed to go out to eat with their day hab and then go to the Dollar Tree. Rob put his new shirt on without being asked! And even when Rob knows they are eating out, he insists on taking his lunchbox with him. It’s almost like a security thing with him. So I pack a few things and let him carry it. That day, though! Once he heard they were going out to eat, he put his lunchbox in the pantry and sat down to wait for their ride. I was so excited and praising him – he looked at me like I was crazy, of course, but I don’t care. He even picked up a dollar to take so he could go shopping. (He rarely thinks about needing money – someone always has it for him) I told him I had already sent money and that he didn’t need to worry about it.
Here’s the thing. Typical parents may not notice things like this. But – autism parents do! We celebrate every single little step and tell everyone about it. Some days are tough, I know, and you might spend more time thinking about what your child can’t do than what he/she can. Been there, done that.
But – celebrating these little things is important! Yell it from the roof tops! I don’t care if your child is 30 when they say Mom for the first time – it’s just as important and exciting as a baby saying it. You deserve to brag about your child as much as everyone else! Celebrating every little step will help you get through those tougher days. Always focus on what your child can do and not what they can’t. You can always work on those goals, but you’ll be happier if you focus on the good and not the bad. Always keep hope alive.
A few days ago, we celebrated Casey’s birthday and, as always, it’s a time that reminds me just how far she has come in her journey with autism. She was evaluated at a children’s hospital when she was three, but we never got a report from them, despite many, many phone calls. So she was 4 when she officially got her diagnosis.
And here we are – 30 years later! Oh my gosh – to write that makes it sound like an eternity and some days, it felt like it, too. She has gone from barely speaking to able, most of the time, to tell me what she wants or needs. (She really sees no point in casual conversation, though). She has gone from being a runner who could disappear in seconds to being able to go shopping and even look at items on her own (with someone very close by!). She has gone from screaming meltdowns that could last hours to maybe one a year – and she is usually able to calm herself before getting out of control. (Or at least tell me what’s wrong and ask for help before she gets too upset).
She loves going places and will try anything. She still isn’t a fan of crowds, but since I’m not either, that could be a family trait and not her autism. 🙂 She looks people in the eye for a few seconds. Her memory is still amazing – and a little scary at times. (I asked her last summer what year she, Mandy and Rob painted a set of snowmen for me and she knew the day and date.)
Here’s the thing. She still has autism. She still struggles with sleep at times and she will overeat if given the chance. She doesn’t like certain noises and she needs lots of blankets to feel safe. Her sensory needs aren’t as strong as Rob’s but they are there. I’ve heard a few times that she is cured. No – she isn’t. She can’t be trusted to keep herself safe. She has definite needs – but she is also one of the most amazing young women I know.
Casey has always had very definite plans for her birthday. If you look at pictures of her from birthdays when she was little (or even 6 – 7 years ago) it wasn’t often you would see a true smile on her face. She will do a goofy “say cheese” smile but it rarely reached her eyes. She needed everything to happen and she couldn’t be relaxed about it. She opened presents without smiles, she blew out candles without a smile. She ate cake and disappeared in her room away from everyone.
Now, though – she can truly enjoy her birthday. She finally understands that plans can change and the day can be what makes her happy. This year, instead of cake, she wanted cookies and sherbet. So I stuck a few candles in a container of sherbet and we sang Happy Birthday (she sang, too!) to her. She smiled at every present and was excited to get money to go shopping. (Which she has asked about every day since!) She was thrilled with tie dyed PJs and tennis shoes. And she was even happier to discover that she got another “da biggest Cookie Monster” (I think she has 5 now – all the same)
But the best part was to see her excitement with a cream stick for breakfast and Arby for supper (she picks the place) and that she had two parties and all of her family around her. She isn’t afraid of being the center of attention anymore. And that makes this mom so happy. She still has the same sweet smile she had as a toddler and the room lights up when she smiles.
Celebrate all of the little steps that make huge changes in your child’s life. It may take years, but those little steps are just as important as the big ones. Sometimes, we forget that.
Over the last few weeks, I’ve shared tips from a sheriff’s deputy and firemen about keeping our children with autism safe during emergencies. Today, I’m going to share information from our local EMS director.
He said that all first responders are trained to look for medical ID bracelets when they get to an accident or emergency. Medical ID bracelets can be purchased that state the person has autism with an emergency phone number. The problem is, many of our kids won’t leave bracelets on. You can also buy rubber bracelets of different colors that say the person has autism and this might be something your child would leave on. They could choose a different color every day.
You could also use a necklace with a metal tag instead of a bracelet or you could even purchase a tag that you could attach to your child’s shoes. It looks a little like a dog tag. If you attach it to the shoe with heavy wire, your child won’t be able to take it off. Of course, if you have a child who won’t wear shoes, this won’t be a help, but it’s worth a try when you are out in public and they need shoes on.
Bracelets (both medical and the rubber ones) can be ordered online, as can the tags for shoes and necklaces. I have even seen shirts that are made with a small pocket in between the child’s shoulder blades where you can put an ID tag or attach a note with your name and phone number. I am always surprised by the number of cool things that have been developed for people with special needs.
He also agreed that having seat belt covers for your child is a great idea. One of his tips was to never use your phone number as the emergency contact on the seat belts. I hadn’t thought about this, but if you are the one driving and you are in an accident, it won’t do the first responders any good to call your phone. He advised that you write a close family member or friend’s number on the seat belt covers – someone who doesn’t ride with you often.
Because people with autism often have pica (they put everything in their mouth), he thinks all families should be trained in CPR and first aid. Our EMS is going to train the parents in our area so that might be someone to call if you want that, too. Red Cross often offers classes, too. Also because of pica, make sure you have a poison control number handy at all times. You make think your child “will never” drink or eat something, but you never know. Those few seconds that you save by having the number available could save your child’s life.
Another tip was to always secure large furniture and appliances to the wall. Children with autism have no fear and are often climbers. He talked of one child who opened the oven door and climbed on it to climbed on it to try to get onto the counter. The stove tipped over on him. (I hadn’t thought of the stove tipping over!) So please, use the brackets that come with appliances and make sure anything your child may decide to climb on is secure.
If you have to secure your child’s bedroom at night for their safety, make sure that you can easily get to your child. Think about replacing window glass with plexiglass. (I should have thought of this when Casey put her head through the third window – so thankful she never got hurt!) Cover all outlets with safety covers and consider moving furniture in front of the outlets to prevent the temptation of playing with them. Hide cords whenever you can.
Tell your children what the tornado siren is and where they should go if they hear it. Remind them to stay away from windows during a storm. Make a plan to get everyone to safety in the event of a tornado. I never thought I could get both of them awake and to the basement easily, but they surprised me.
He also shared that one of the best things you can do is to familiarize your child with first responders. Let them see a squad car, a fire truck and a deputy’s car. Take them to meet the deputies, firemen and paramedics. If they have already met the first responders, maybe in an emergency, they will go to that person and not hide.
We all know that the more familiar a person with autism is with something, the less anxious they are about it. The same goes for emergencies. Practice your drills. Meet your first responders. Check your house constantly for things that need to be secured. Talk to your children about emergencies. Even if you think they aren’t paying attention, they are!
Last week, I shared tips from a deputy sheriff to help first responders keep your family member safe in emergencies. This week, I’m going to share what a fire chief and fire prevention officer shared at the meeting.
The first thing they both said was to have working smoke detectors in your home. Sounds obvious, right? But do you have them in the right places? Do you change the batteries twice a year? You need a smoke detector on every level of your home – especially near the bedrooms so they will wake you up at night. Change the batteries when you change your clocks in the spring and fall – or on certain holidays, like July 4th and Christmas if you don’t have to change your clocks.
The fire prevention officer shared that studies have been done that children will react to their mother’s voice faster than the beeping of a smoke detector. There are smoke detectors available that you can record a message on, such as “Go outside” or whatever you think your child will respond to. I had no idea there were so many different types of smoke detectors – ones that only flash lights, ones that talk, ones for deaf people. Only you know what your child might listen to, so do some research and find one that is best for your family.
I’ll admit – I have told my kids from the time they were little to run to the garage (our garage is detached) if they hear the smoke detector beeping. They hear it, but they ignore it, so I have very little hope that they would leave the house if they hear it in the middle of the night. But, I also never thought I’d be able to get both of them awake and to the basement in case of a bad storm and they proved me wrong, so ….. maybe they will leave!
Decide on a plan to escape from every room in your home – preferably two ways. Share these plans with your kids and practice them. They may not know why you are doing it, but we all know that when you practice something often, your body tends to take over in a panic. I am sure Casey won’t go out her window, unless I am there to encourage her. She is scared of heights. Rob might go, as his room is on ground floor. Neither would think to check doors for heat before opening it. I’ll be honest – fire is my biggest fear. Rob’s room is right beside mine, so my plan is to get him up and moving before I get Casey. Of course, I’ll be yelling her name the whole time, hoping she’ll come to me. Is it a great plan? Probably not, but it’s all I can come up with. If I can get Rob moving, I’m sure he would go to the garage by himself.
Also – remind your children over and over and over again, once they are out of the house, do not go back in – for anything! Not pets, not you. The firemen will go in and get pets once they get there. Children tend to be very emotional and when they are scared, they may try to run to where they feel safe – even if it is back into danger. Especially people with autism – they thrive on routines to keep them safe. Tell them. Make them repeat it.
Fire prevention is the key. Lock away matches and lighters. Never overload extension cords. (As a side note, they recommended throwing away the cheap dollar cords. People tend to see three outlets in the cord and use them all, not thinking that they are being overloaded.) Clean the dryer vent. Be aware of where you use candles. Keep things away from the stove and furnace.
As for a car accident, they both stressed that using seat belt covers would be a great idea. These can be purchased on several websites or you can make your own. Last week’s post shared more about them.
They also mentioned sharing information with the 911 system about your home. One thing you really need to share is if you have to have heavy locks (or several locks!) on your doors and windows to keep your child safe at home. If they know this, they will be ready to break down your door when they get to your home and save a few minutes. Every second counts in a fire.
You can try putting stickers on your doors to make first responders aware of a person with autism in the home, but like stickers on cars, they may not be noticed right away. If you do choose to do this, make sure the stickers are large and brightly colored. Make sure your neighbors know about your child’s autism – they can be a great resource if you aren’t able to get out and the fire department needs to look for all of you.
Our fire department has a “smoke house” that they use to show children what it might be like to wake up in a room filled with smoke. They are also very open to bringing people with autism to the fire station and letting them see firemen with all of their gear on. They look scary and loud – seeing them before an emergency will help your child understand they are just men that are there to help. Call your fire department and ask if this is something they would allow.
There is no way to know how your child will react in an emergency. They may surprise you and follow your plans exactly or they may hide. The more you share with your local first responders, the better it is for your entire family. Be honest and keep the lines of communication open between you and your first responders. Ask what they have available that might help you explain fire safety to your child. You never know until you ask and in my experience, first responders want to be very involved in all parts of the community.
Last week, our autism support group (ASK Autism) was excited to have four first responders from our county join us to share their tips for helping them keep our family members with autism safe in emergencies. We got so many wonderful ideas that I decided to split it into three parts and will share the information with you over the next few weeks.
Autism can be particularly challenging when it comes to preparing for emergencies. By it’s very nature, autism is unpredictable at times and we all know that just because our child does something one way, one time, it doesn’t mean they will ever do it that way again. But – we can prepare ourselves and as many people around us as we can.
The first one to speak was a deputy sheriff. The sheriff’s department handles the entire county where we live. If you have a police department, make sure you talk to them, too.
Deputy Bryant’s biggest tip was to do anything we can to make it obvious there is a person with a disability in the vehicle in case of an accident and we aren’t able to speak. Stickers on the windows are good, but in the dark and in an emergency, they might not be noticed. He advised purchasing or making seat belt covers that say “person with autism” or whatever the disability may be. These can be purchased online and aren’t too expensive.
The covers are simple – just some type of material that wraps around the seat belt and is held by Vel-cro, so you can easily switch to other vehicles if you need. Mandy and I are planning to purchase plain ones and use a Cricut to add the information we feel is most important to the cover. I plan to write on the underside information like their names, an emergency number and their birthdays. The deputy shared that the covers, even if the person was out of the vehicle, would be something that would be noticed and would help the first responders to understand how to help your loved one faster.
Another tip the deputy shared was that our county collects information from families and that when 911 is dialed from that residence the information will pop up to the dispatcher. The forms are simple and we can give us much information as we want. Items like where they sleep, if they will come to their name being called, anything that may help first responders that are called to our home in an emergency. Even if you think what you want to share is common sense, share it anyway. You never know what might save your child’s life.
I don’t believe this is something that is available everywhere, but maybe your phone call to your local department will get the ball rolling for them to put an information system in place. In either case, you won’t know until you call. My forms are almost ready to email back – I’m just waiting to see if I think of anything else that might be important.
Another idea he had was to flag your license plates. Again, this is available in Ohio – you would have to check with your area. It’s another simple form, but this one has to be signed by a doctor. It lists the person’s name and attaches their government issued ID, if they have one. You can list up to nine license plates of vehicles your child may be riding in and if your plates are run by a deputy, it will show that there is a person with a communication disability in the vehicle. It won’t share more than that, but at least it is a warning that there could be a communication issue and the deputy can be aware that behaviors may occur because of that.
The deputy also recommended that you have a recent picture of your child on your phone at all times. And to know their weight and height. If your child is a runner and disappears on you out in public, you have an instant picture to show anyone who might be helping you look. When cell phones became so wide-spread, I took a picture of Casey and Rob as we were leaving to go anywhere. That way, I had what they were wearing in the picture, too. Thankfully, I’ve never had to use my pictures, but you never know!
Share any sensory issues your child may have, such as to the flashing lights or sirens. First responders won’t know to keep a close eye on your child if they don’t know loud noises will cause them to panic and run. Our department also has Project Lifesaver available for our residents. It is a tracking device your child can wear and if they do get out of your home or away from you, they can be tracked quickly.
Something I found very interesting as all of these men talked to us was they kept saying that, though they had been trained in working with special needs, they were surprised at our questions and had to really think about what truly coming to an emergency with a person with autism might be like. My best advice to you – call your police/sheriff’s office, the fire department, the emergency squad. Get as much information to them as you can about your home, your child and their needs. They can’t be prepared to help if they don’t know the situation. Call before you need them!
One of the worst things an autism parent can do is focus too much on the future. By that, I mean that you get yourself too scared of the “what ifs” to really see the small steps your child is making every day.
Life is too overwhelming if you focus too much on what your child needs – there is so much! Obviously, you are always aware of those needs and they are never far from your mind, but you can’t live your life that way.
You need to stay present to help your child. For example, if your child is having a meltdown, don’t start thinking of a future full of screams and kicking. Take slow deep breaths and only focus on the next minute. Get through that one and think of the next. If you start thinking this will be your life forever, you will have a meltdown, too.
When we are having a bad day, I forget about everything. All I think about is getting us through that day. Tomorrow will take care of itself. You can’t help your child through a bad time if you are thinking of tomorrow or next week or next month.
After your child calms down is soon enough to think about what needs done to prevent it from happening again. Do you need to schedule a doctor visit? Adjust medications? Talk to the teacher? One small step at a time.
Yes – you want to dream and have hopes for your child – always! But thinking too far in the future during a bad time will only make you think you are dreaming too high. Some days, your focus simply needs to be to take that next deep breath.
It’s the same with the endless paperwork. If you feel overwhelmed by it, you might not even start. So tell yourself you will only do one page and stop. When you break it all down into very small steps, you get it done without losing your mind. (By the way… When you fill out forms, make a copy. It’s do much easier the next time when you have all the information right there!)
Yes, plan for the future, but keep your plans fluid. Every day, your child will change and plans may need to reflect that. Just don’t let the future turn into a black hole. When you are having a rough time, stop thinking too far.
Remind yourself all you have to do is breathe. The next minute will take care of itself.
When you have a child with autism, life skills need to be high on the list for what needs to be taught. I’m not saying that typical school subjects aren’t important, but life skills will help your child gain a little independence – even if they always live with you.
I’ll admit – while Casey and Rob do have chores to take care of, I haven’t always pushed them to do more. When I’m tired, I just want things done – not take the time to show them how to do something. I try to remember, tho.
Over the last few days, I’ve been reminded how much Rob loves to help me. And that Casey will usually say “no” as she’s getting up to do whatever I asked. After several months of dealing with a foot injury, I ended up in a hard cast and am supposed to stay off my foot as much as possible.
Luckily, I’m able to put weight on it for a few steps here and there, so I’m not completely helpless and I have a knee scooter to get around the house with. But, doing some things are a little tricky.
So I’ve asked Casey and Rob to help. He filled Blue’s water dish. She got the crock pot for me. He poured drinks for lunch. She folded laundry. They both packed their own lunches yesterday.
Are these huge things? Maybe not, but it shows again how important it is for our kids to understand they are part of the family and need to help when they can. Casey laughed about getting the crock pot and he was so proud he carried a bowl of water without spilling it. So, yes – these things are huge!
When there are so many other things your child with autism needs to learn, I understand that life skills are just a bother. But – imagine how much easier their life will be if they can brush their own teeth – wash their hair – choose their outfits. (I’ll be the first to say Casey sometimes chooses … How do I say this… Loud outfits, but she’s happy and excited, so who cares??)
Having autism is not an excuse to do nothing for yourself. Let your kids learn that – autism is not a free pass. Having said that, obviously, there are better times than others to work on life skills. If your child’s anxiety is high, you’ll make it worse forcing them to perfectly brush their teeth. But, teach them!
People with autism are capable of so many things, but they have to be given the chance to try. Will they succeed the first time? Probably not… But do you? How many things did you have to try over and over before you got it? Why should your child be any different? Again – autism is not an excuse!
Rob likes to help with cooking and to clean mirrors/windows. Are they always streak-free? Nope, but they aren’t always perfect when I do them, either. He likes to flip pancakes. Sometimes they land where he doesn’t want them to. So we try again.
Casey always folds her clothes and has to be reminded to fold others, but she will. She will help with cooking as long as it’s not near the stove – she is very worried about getting burned.
I’m sure in the next few months, they will continue to surprise me with what they can do. And what they are proud to do to help me. Let your children help you before you need the help. Give them the chance to be proud of what they can do. It’s the best of both worlds!
When you have a child with autism, fear is never far from your mind. Fear for their safety. Fear they will need something and not be able to communicate that need. Fear they will be teased. Fear they will be lonely. The list goes on and on. But, despite the fears, you have to let them go. You have to let them try new things, go new places, meet new people. Will it always be a good experience? Probably not… but you have to let go.
One of the pages I follow just had a post from a mom who is upset that her son’s teacher wants to transition him to another class. She is actually pretty mad about it. She thinks her son is not ready and is not telling everyone how much he is regressing, despite glowing reports from his therapists and aide. She asked for help in forcing the school to do what she wants.
The thing is, I completely understand her fear. It’s terrifying to let your child be near new people that you don’t know. It’s scary to change a routine that he/she depends on. And really, as autism parents, we learn to live in that routine and we don’t want to change it, either. It’s what we know. But, your child deserves the chance to try. By holding your child in the same place, it may be easier on you, but it also keeps your child from growing. It’s not fair to your child.
I’m sure this mom sees behaviors at home that the school doesn’t see. I’m also sure that her son shows more skills at school than he does at home. Every child does. I’m constantly hearing about things that Casey and Rob will do for others, but when I ask, they look at me like I’m speaking in German. Let’s face it – kids always act worse for parents because they know no matter what, we’ll love them forever. When I was teaching, so many parents would say they had no idea their child could do something because they refused to do it at home. It happens.
But, if your child’s teacher and therapists are seeing amazing progress, it’s time to let go a little. No good teacher will move a child before he/she is ready. Ask for a meeting with the teacher and therapists and listen to their plan. You may not like it, but you can ask questions and share your concerns. Go meet the new teacher. If it’s a new school, tour the entire school and take your child to visit.
The change in routine may not be easy and you need to understand there may be a few rough weeks or months, but ultimately, pushing your child to stretch and learn is what you need to do. You know how you feel when you try something new and really like it? Your child deserves the chance to find what they like, too. They need pushed to keep learning and growing.
Try not to let your child see your fears. Make the change sound like fun and, if you have to, pretend you are excited about it. Do what you need to do to alleviate your anxiety. If the teacher is a good one, he/she will completely understand your anxiety and will do everything they can to help you. Visit the class and see the children who will become your child’s friends. See how the teacher runs the class – you’ll be able to offer her/him ideas on how your child will fit in the best. You can share your child’s strengths and your fears.
With autism, change is rarely easy. Life is unpredictable and it won’t hurt your child to learn that. The good thing with letting go is that you can prepare your child (and yourself!) for changes and grow together. It’s scary. But letting your child try is the best thing you can do for him/her. Remember – always reach for the stars. You won’t get there if you keep your child in one spot forever.
