Tag: autism parents

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Autism Families Don’t Need Pity

Autism Families Don’t Need Pity

I suppose that is a pretty blunt title, but it’s true.

I was at an event with Casey and Rob last week and a lady I barely knew came up to me and wanted to give me a hug and tell me how badly she felt for me. Honestly, I was confused – I had no idea what had happened that made her feel that way. So I asked why she felt sorry for me and she told me because I had Casey and Rob.

Shock. I was in total shock. Why would a near stranger ever think that was an appropriate thing to say? And if she had even a clue about our family, she would never have said that to me. So I said something like – why would you even feel that way? And her answer was again that poor me – I had to live with two people with autism. Lucky for her, she moved on to someone else before I could get over my shock and really tell her how I felt.

The really sad thing is – maybe 10 minutes later, another person walked up to me and said nearly the same thing. I looked over at Casey and Rob, saw they were having fun and asked why she felt pity for us? Because our lives must be so hard…. I’ll admit it. I got angry.

I told her everyone had hard days and our lives were no harder than anyone else’s. Sure, I’d rather not relive some moments in our past, but I’m fairly certain every parent in the world feels that way. There are many times I’ve believed my life was easier than most. When my three were teenagers, I never had to worry about where they were or if they were drinking or driving crazy. I didn’t have to pay outrageous car insurance bills.

I didn’t have to try to run three people in three different directions every single day. I didn’t fight about clothes, make-up or curfew.

Instead, we ate supper together every night. We watched movies and played on the trampoline and in the pool. We enjoy hiking together. We go shopping and out to eat. We do crafts. We danced silly dances in the living room and sat on the porch swing.

Casey and Rob are happy. They get to do things they love to do and be with people they love. They look forward to simple things in life and don’t worry about stuff that truly doesn’t matter. And people feel sorry for us??

I’m not saying that we didn’t have exhausting, miserable days. I’m saying that everyone does and days with autism are no worse than any other family. In some ways, our lives are easier.

It’s all in perspective. Sure, there were days I didn’t like autism much. But a good night of sleep usually took care of that. (Sleep is seriously the best cure for so much!!)

So, I’m asking anyone reading this to think before you speak. You may feel that your comment about feeling sorry for us is comforting, but it’s not. Yes, there are families that eat that pity up, but most of us don’t feel that way. We feel like you are only seeing the autism and not the amazing people our kids are. Instead of offering pity, offer help. Learn about our families and offer to stay with our kids so we can take a nap or run an errand. Learn how strong and close most of our families are and how we pull together to help each other.

We don’t need your pity. We need your acceptance and your help.

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Autism and Dental Visits

Autism and Dental Visits

Last Monday, Rob pointed to his cheek and said, “Hurts!” I was worried because he has such a high tolerance for pain that if he says something hurts, a typical person probably would have been crying about it days before. But, I couldn’t get him to tell me what hurts – whether it was inside his mouth or his cheek. He ate supper and didn’t mention it again that evening.

Tuesday morning, he got up and again said, “Hurts” pointing inside his mouth this time. I asked if it was his cheek or throat or a tooth, but he just kept repeating “Hurts.” He didn’t have a fever and was eating, so I was worried, but not panicked, yet. I did call his neurologist to get advice on where to take him to the dentist, if it turned out to be a tooth. I looked in his mouth, but couldn’t see anything obviously wrong. Because his allergies had been bothering him, I almost thought maybe it was sinus pressure. (My teeth ache at times from that).

When he got home that day, he was hurting. Obviously hurting and he could finally tell me it was a tooth and he pointed to it. I felt terrible for not calling the dentist that day and did what I could for him that evening. He was still eating without issue, but he told me “hurts” repeatedly through the evening and was asleep early. I cried. I just couldn’t help him and I felt so guilty for not making more calls that day. (But, again – I wasn’t sure what the problem was – he didn’t tell me tooth until late in the day.)

Wednesday, he wanted to go to day hab with Casey, even though I wanted him to stay home so I could keep an eye on him. As soon as dentist’s offices opened, I started making calls and it wasn’t long before I was ready to cry again. I couldn’t find anyone to even look at him – that would even try to help us. I was told they weren’t trained for these types of people – that they didn’t think they could help him – that I needed to find someone who “knew” autism. I finally found a place that was two hours from home that would happily look at him – but they wouldn’t take his insurance. I told her I would happily self pay just to get him some relief, but she told me they couldn’t do that.

After many, many calls, I finally found a place only 45 minutes from home that said they would be happy to see him and made an appointment for early the next morning. I had a good cry when I got off the phone – finally, someone who cared enough to at least try! I had no doubt that Rob would be difficult, but we needed help. I wanted to call those other people back and say, “What about helping people? isn’t this why you became a dentist??” but I didn’t.

I worried all evening about how Rob would react to a new place, a new doctor and new experience. He was in so much pain, he didn’t even make a fuss when Casey left without him. When we got to the office, I told him I would get him construction paper as soon as we were done if he would let the dentist see his tooth.

Rob walked in so calmly. When the tech called his name, he jumped right up and followed her. When we got to the cubicle, he sat right down in the chair, looked at the tech, said “Hurts” and opened his mouth to point at the tooth. I was in shock, but so happy! She asked him if she could take an x-ray of his mouth and again, he got right up and followed her. Once he understand what he had to do (bite down and hold still) he was perfect. The x-ray showed a broken tooth. Our choices were a root canal or pull it and I told her it just needed to come out.

He went back to the cubicle and sat down. When the dentist came in, he opened his mouth and showed him the tooth. The dentist talked to Rob, not me (that was so awesome of him!), and Rob let him put a temporary filling in with no issue. (The only problem came when some of the filling stuff was on his tongue and the dentist told him to stick out his tongue and he looked at me to see if that was okay. 🙂 ) They gave him antibiotics and he goes back in two weeks to see if he will let them pull it. If he won’t let them, an appointment with a specialist will be made and that tooth and his wisdom teeth will all come out under sedation. The office we went to will use nitrous gas next time and see if that will relax him enough to pull it.

When we left, I was in tears – again. I kept telling him how proud I was – that he did so awesome. He looked at me like I was crazy (again) and reminded me I promised construction paper. We found a store and he chose three big packs, plus two new books. I don’t care if I over did it. I am so proud at how he handled it all! I have hopes that he will let the dentist do what needs done the next time, too, but pulling a tooth is much scarier that having x-rays, so we’ll see.

This was a huge reminder that we never know what our kids are capable of until we let them try! Never in a million years would I have dreamed he would be so cooperative (I have many terrible memories of taking him to the dentist as a child – I’m sure everyone in the building heard his screams). Let your kids try! The worst that can happen is you will have to leave and try again another time. Who cares if they cry? or scream? Don’t worry about what other people think.

If I had one wish from all of this, it would be to all of the doctor’s and dentist’s and other medical people – please, please… don’t ignore us. We need help and every time one of you turns us away, it’s like another knife to our heart. We know our kids need extra help. We know it may be a terrible experience for you – but we need help as much as everyone else. Welcome us. Tell us you will try. Even if we have to go somewhere else, at least we know you care enough about our child to try and help. That little effort means so much. Don’t turn us away before you try.

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Self-Care and an Autism Parent

Self-Care and an Autism Parent

Repeat after me… “I have to take care of me so I can take care of my child.” How many times have I said that to you? How many times have I admitted that I’m not very good at it? My head knows, but sometimes, I still feel guilt when I just sit.

I realized last night I was running on empty when I was getting anxious because I hadn’t finished a project. The crazy thing is – this project is a hobby! Something I enjoy doing. I was getting anxious because I hadn’t had time to finish scrapbooking several pictures.

Somehow, I let a hobby I enjoy become something that had to be done. I tend to do this when I haven’t taken the time to do something for me. Usually, walking and working out help keep the anxiety away but with the foot injury, it’s been months since I’ve been able to do either.

Another reason I noticed that I hadn’t done much for myself was a blog I read by a young man with autism. If you haven’t read Dustin’s Dynasty, you are missing out! His perspective as an adult with autism is helping me learn how Casey and Rob might feel about different things. He is learning how important it is for him to take care of himself and said he struggled with doing nothing.

Wow – that hit me right between the eyes. I am rarely doing nothing. I have my computer on my lap or I’m crocheting or I’m working on another project or I’m reading. I don’t sit and watch TV without doing something else, too. This works for me – until it doesn’t.

When I realized my hobbies were causing me stress, I knew I had to change things. Last night, I sat on my patio and watched the birds. I listened to the wind chimes. I daydreamed about pool days. Once or twice, guilt tried to sneak in – I should be sweeping the patio or powerwashing the house. I shoved those thoughts away and went back to watching the birds.

I’ve heard so many other parents say they have given up hobbies – they spend all of their time taking care of their child, their home and working. They can’t sleep at night, they are gaining weight, they have forgotten how to watch the clouds. I completely understand this, but… It’s not a good life for you or your child.

We already worry about who will care for our kids when we are gone. Taking care of yourself now will help you avoid preventable health issues – heart disease, high blood pressure, diabetes – that can all be prevented or controlled by you taking care of yourself.

A break from autism is wonderful and needed at times. But, there are many ways you can care for yourself with your child. Go for walks (put your child in a wagon or stroller). Play on a playground. Share your favorite hobbies – let your child paint, take pictures, play an instrument. Craft with your child.

Practice healthy recipes together. Go on a picnic. Go bowling. Play miniature golf. The ideas are endless. And yes, you may have to adapt your outings to fit your child’s needs. But, right now, your needs are more important. You have got to take care of you!

I’ll be the first to admit – I’m struggling with guilt right now. The floor needs swept. A few windows need cleaned. I need to meal plan. I have two stories the need written for the paper. But – I’m going to watch a favorite movie and maybe take a nap.

There are days when I have no energy or desire to do anything. I need to remember that it’s ok to do nothing. To sit and recharge myself without guilt. No energy is my body’s way of reminding me I’ve pulled myself too thin again and I need to chill out and do nothing.

Push away the guilt. Let yourself recharge before you crash. If you crash, so will your child. Take care of yourself for them if you can’t relax for yourself. I challenge you – every day for the next week, do one thing for yourself. It doesn’t have to be a big thing – just something for you. Watch TV. Read a book. Watch the clouds. Go for a walk. Savor a milkshake. Anything – just for you!

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Autism and Tips from First Responders (part 1)

Autism and Tips from First Responders (part 1)

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!

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Autism and the Art of Letting Go

Autism and the Art of Letting Go

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.

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Autism, Big Steps, Little Steps and a Happy New Year

Autism, Big Steps, Little Steps and Happy New Year

Happy New Year! I realize I’m about a week late wishing that for all of you, but the last several weeks, have been busy and fun and full of family time. While I love sharing our lives with you, sometimes, it just doesn’t seem to happen.

We had so many huge steps forward for both Casey and Rob over the last month. December is a happy month, but for Casey, it also tends to be very stressful as she has a list in her head of what needs to happen for it to be a perfect Christmas and until those things are checked off, she is very serious. This year, though! It was truly amazing! She still had things she wanted to do, but she wasn’t worried about getting everything done. She laughed and enjoyed her way through the month!

She seemed to finally realize that I would make sure everything (well, most everything! 🙂 ) she wanted to do would happen. She didn’t worry about going to light shows. She didn’t repeatedly ask about opening presents – or going to grandma’s for lunch – or Santa coming. Maybe, in some strange way, the pandemic has helped relax her need to control everything. She has finally learned (by way of COVID) that she simply can’t control everything.

We even changed our usual routine of going to my parent’s house for supper on Christmas Day. They came to our house instead and we had supper at their house the day after with my brother and his family. And when she was opening her presents, she was smiling! She giggled at the new Big Bird, she studied the new color by number books, she carefully pulled tags off of new clothes. Usually, she flies through her presents – she has a need to see what she has gotten. This year, she took her time. The pictures of her smiling as she looked at her new things mean so much to me. I truly don’t know when she last smiled in a picture on Christmas morning.

This was also the first year that Rob wrote a letter to Santa! And, on Christmas Eve, he was the one who almost caught Santa. He was asleep and then stumbled from his room. He asked me for Santa and I told him he needed to be asleep. He flopped back on his bed, sound asleep again. I have had my doubts that Rob really believes in Santa, but after that, maybe he does. He was excited to open presents, too, and was thrilled to get an entire set of the power rangers he asked for, plus his signs and Legos. And, plenty of stuff to rip/cut up.

They both went to a movie, again. Rob ate snickerdoodles! They both played Charades with us. Rob is learning (some days with a lot of prompting!) to use a quieter voice when he is sensory seeking. Casey is carefully painting her crafts and not just throwing paint on to say it’s done. Rob was in a store with Mandy and told her “It’s time to eat!” A complete, non-prompted sentence! He is singing songs and chose to wear a brand new shirt! They are both handling changes in their schedules with no reaction.


Last year was a tough year for a lot of reasons. Sometimes, in the midst of sadness, it’s harder to see the little steps forward that our kids make. It’s easier to get swept up in all the negativity and the list of what they aren’t able to do, yet. Notice – I said “yet.” Not today doesn’t mean not ever. Always, always dream for your kids and help them reach for the stars. It’s hard and it’s exhausting, but you will never regret it.

Our wish for all of you is a year full of big and little steps. Celebrate them all! Share them with the world. Your steps forward might be just the encouragement another person needs to keep fighting for their dreams! Have a happy and safe 2022!

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Autism, Holidays and Growing a Thick Skin

Autism, Holidays and Growing a Thick Skin

At our last autism support group meeting, one topic that came up was how to deal with the comments – the stares – the outright rudeness of some people when our children with autism might act “different” than others while out in public. Or even at family/friend functions. How do you handle the questions, the comments. How do you not feel like crying when someone is mean to your child?

It really is one of the hardest parts of autism to handle. Just being a parent makes you want to protect your children from mean people. Add in the autism (cause, you know, someone different either brings out the best or the worst in people) and it can be so tough. And, unfortunately, it seems the mean people always find you on days where you are already stressed and near tears. The holiday season just adds more stress and more opportunities for those “helpful” people to make you want to cry and never leave home again.

Don’t let them do that to you! Your family has just as much right to be at every activity as everyone else. Yes, it’s hard. Yes, you will get mad. Yes, you will cry. And yes – you will eventually develop a thick skin and will learn to let those comments roll off your skin. You will also learn to give a death stare to people. Most people will look away quickly once they realize you overheard their nastiness and don’t care. Besides, you can always hope karma gets them later. (yeah, maybe not the nicest thing to think, but…. it’s better than smacking them yourself!)

So back to our meeting. I felt so bad for one young mom. She has a little guy (that’s his picture with the blog) and took him to a Christmas activity. It was crowded and overwhelming. This poor mom heard the comments about her sweet little boy. Instead of helping her – or encouraging her for being brave enough to try – people weren’t kind. She took her son and went home ready to cry. Her comment was she thought she would just stay home from now on. Been there, felt that so often. I’ve cried leaving places. I’ve cried once I got us all safely home and could hide from the kids. I’ve ranted to myself. It took years, but I have that tough skin.

It’s rare now that someone’s comments get to me. It does still happen, though. Not as bad as it used to – and usually, if a comment hurts me, it comes from someone that I never expect to make such a comment. It takes longer to develop that thick skin around family and friends, but your first priority is always your child. Some families take a little longer to learn how amazing your child is.

Another mom and I shared that we knew how these young moms felt. We understood how hard it is to let the world see your child and not know if the world will love and accept him/her or will be cruel. We also know it’s important for your child to be able to explore the world. You will never know what your child might like if you don’t try. It may take several tries before you know for sure. It might mean you try and then wait a long time to try again. Only you will know, but – don’t let the rude idiots of the world scare you into staying home.

I’ve lost my temper with a few people who made comments about Casey and Rob. I’ve (not my finest moment) yelled at people in stores. I’ve stopped moms and embarrassed them by telling them what little jerks their children were to mine. I’ve developed a death glare for those that I catch staring. I’ve ignored some people. I’ve replied to some comments by saying “Thank you for showing me there are worse things in the world than autism. My child could be rude and mean like you.”

Remember, I’ve been doing this for more than 30 years. It takes a long time to learn to ignore what other people say and think. You will get there, though. Keep trying new things. Meet new people. Learn to glare. Learn to stand up to bullies. Remember that no one’s opinion really matters. You can do this. I’m sure of it.

If all else fails, ask a veteran autism parent to go places with you. You can learn from the best. 🙂

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Autism and Making New Christmas Traditions

Autism and Making New Christmas Traditions

So many wonderful Christmas traditions involve large, loud gatherings or crowds at stores. When you have someone with autism, those are definitely not places you want to be (well, you want to be there, but it’s not always possible!). Sensory meltdowns are real and can ruin a day quicker than almost anything.

We never had huge holiday parties. My family is small and everyone understood if Rob or Casey needed to run upstairs to my or my brother’s old bedrooms for some quiet. So telling people we weren’t coming to their party wasn’t an issue when Casey and Rob were little. It’s actually more of a problem now. People just don’t seem to understand that just because they are adults, the autism didn’t go away. They still have the same needs – they are just more capable of handling sensory needs now. But – that took us years of practice, years of finding what they needed, and years of hiding from the world.

We started our own traditions. I absolutely love holidays and birthdays and always want them to be special. I had to figure out how to give each of the kids a special time – within their abilities. It wasn’t always easy, but I think I managed to do it. Now, Casey and Rob are both more willing to try new places (especially if Mandy and Cory are with us!) but we still need to be aware that crowds will get to Rob quickly. And that noises (like fire trucks in a parade) are painful to both of them. She is okay, usually, with temperatures, but he gets hot easily.

A crowded mall to see Santa is not an option for us. Luckily, Casey got to see him in the parade and – this completely amazed her – when we went to a local light show, Santa was sitting in a sleigh at the end. And – he knew her name! He waved and said, “Hi Casey! Hi Rob!” She couldn’t stop smiling and giggled the rest of the evening because he knew her and he said hi! (I’m fairly certain Rob knew why Santa knew her name, but he didn’t ruin it for her!)

Casey is like me and loves all things holiday. (as a side note, I have to mark out all of the holidays that calendars have printed in them because she wants to celebrate them all!) She has been wearing Christmas shirts since the day after Thanksgiving and is dropping hints that she doesn’t have enough of them. Her calendar is full of Christmas things to do – bake cookies, see a movie, several light shows, go shopping. The list in her head is long and she wants it all to happen. Luckily, none of it is impossible and Rob is willing to do most of it, too. (He likes making ornaments, but he’s a one and done kinda guy!)

Look near you for drive thru light displays. There are so many near us that we rotate each year. And – they aren’t expensive – even better! Plus, the drive thru ones let your child feel safe while the rest of you can enjoy the displays. Check local zoos for sensory days. The zoo we went to last week has a huge light display and several days throughout the season are designated as sensory friendly. The music is turned down and all flashing strobe lights are turned off. Most places do something similar.

Many malls offer a sensory friendly Santa visit, too. If your mall doesn’t, ask if you can schedule a time for your child to meet Santa outside of his usual spot where the crowd may be thinner and there will be less noise. Again, most places are happy to accommodate your child’s needs – but you have to ask.

If you are invited to a party and want to take your child, just explain your needs to the hostess/host. Again, most people are happy to help – they just don’t know what you need until you ask for it. And if someone doesn’t want your child there, do you really want to be there? I sure don’t. We are a package deal. 🙂 (not that there aren’t times you need to go places alone to get a breather – I mean, do you want to be around someone who doesn’t accept your child?)

Or better yet – start your own party traditions. You can keep it small or invite the whole town. Rob and Casey never minded how many people were here because their rooms were off limits to guests – they always had their safe place to go to. (Again – your child may be different. I can think of three or four young adults I know that would hate having their home invaded by guests!)

My point is – your Christmas doesn’t have to look like mine or your neighbor’s or the rest of your family to be an absolutely amazing, magical time. People seem to spend too much time comparing their lives to others and feeling bad when they aren’t “keeping up.” But – did you ever think that other people may feel they aren’t keeping up with you? Yes, your life with autism may be a lot different, but that doesn’t mean it isn’t an awesome life. You don’t know what others are thinking – be proud of your family’s uniqueness! Flaunt it. Wake up the world!

Find the Christmas traditions that work for you. Big, little or no party. Shopping online or in stores. Visit holiday events or watch them on TV. Our lives are special and any tradition you decide will be special, too, because it’s completely right for your family. As so many other people are running around like crazy trying to do everything and find the perfect gifts, you will be home quietly watching a Christmas movie in your PJ’s and drinking hot chocolate. Autism doesn’t ruin holidays – it can make them even more special.

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Autism and a Rough Week

Autism and a Rough Week

I am still a firm believer that whoever decided we need to change the clocks twice a year need to live with a person with autism for a week after their decision and see just how much it messes up lives. It’s been a rough week here (and I’ve heard from other moms that their weeks haven’t been very good, either). I wish I could completely blame our week on the time change, but unfortunately, I think it’s more that I missed signs that Rob and Casey needed help.

I mentioned last week about Casey’s behaviors being out of control a few evenings and that she is just on edge. She is doing better, but is still fixating on things. She wants laundry done every day. She wants her PJs in the bathroom as soon as she gets up in the mornings. She is getting up in the middle of the night to put the clothes she is planning on wearing in the bathroom. It’s been getting worse and I just missed it.

Rob has been slowly changing. He’s a louder at home and needs his verbal stims to calm his anxiety. Unfortunately for the rest of us, he needs to yell some of his phrases at certain points. He’s anxious and obsessed about getting things to cut and rip up which caused issues at his day hab. He wants tight hugs – and to be left alone. And it all happened so slowly, I missed it.

I’ll admit – I’ve been too focused on my own grief and the pain in my foot. I just missed the signs that Casey and Rob needed help, especially Rob. Yes, he got louder, but it didn’t seem to be too bad. Casey is more obvious when she needs help – Rob withdraws. And I didn’t see it.

After the issues at his day hab, I realized that he has been struggling for weeks, too. He may not be able to voice his grief and anxiety about losing the baby, but he feels it – and he definitely knows that I’ve been crying. Everyone around him has been upset for over a month. He is so sensitive to what people around him are feeling – I was just dumb for not realizing he was feeling it, too. It breaks my heart that I didn’t realize it. If it hadn’t been for autism, he would have been able to share his feelings. And some days, autism just sucks.

At their last doctor visit, we made the decision to reduce meds for each of them. It was the right decision at the time and they were doing well. We lost Raylan less than two weeks later. I should have immediately bumped their meds back up, but honestly, I just didn’t think of it. I didn’t think of much of anything that week but just getting through. I couldn’t see Mandy and Cory (no visitors at the hospital) and they were all I could think about.

A few days ago, I put them back on their full doses of meds. Casey said she was okay with her little pill, but I can see she isn’t. While I know it takes a while for Rob’s to build back up (and his reduction was much larger than hers!) he seems more like himself already. He is sleeping better and that will help if nothing else. He even happily put on a new shirt (a hoodie – I haven’t seen him in a hoodie since he was a little guy!) and smiled for our family pictures yesterday. He even seemed to enjoy it.

I’m sure we still have some rough times coming, but I do think this is the best for both of them right now. I can try to reduce their meds again in January or February, when life settles down a little and our loss is a little less painful. Trying new doses or medications is never a favorite or easy thing to do. It’s so hard to know if any changes that are seen are from the medication or just life itself. It’s always a guessing game – a gamble. But one that is necessary in our lives.

I know many people are completely against giving their child medicine for behaviors or anxiety. I understand that, but – would you withhold medication for a heart problem or diabetes? It’s the same thing – their body needs help and as their parent, you need to understand that your child on medication is not an issue of bad parenting, but rather a body that needs help. I am in no way saying medication is always the best choice, but if you have exhausted every other option, don’t refuse to consider it.

Casey and Rob are both happier when their meds are working. They both know their pills help them and will just stare at me if their pills aren’t ready for them at the expected times. They may not be able to verbally tell me, but their actions let me know. And that’s all I need.

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Autism and Awesome Surprises

Autism and Awesome Surprises

This has been an up and down week. I ended up in a boot for an injury from a few months ago, Casey had a really rough evening a few nights ago, today was supposed to be the baby shower and the time change. Despite all of that, I just had something happen that proves again that autism can always surprise you in good ways!

Rob has had a few loud days this week, but nothing that would make me want to increase his meds back to what they were. But, my little guy has shown his sense of humor, his wonderful singing voice and an even better surprise this week, too!

One day when I went to pick them up, a staff person came out with them, so I knew something had happened. It turns out Rob had taken a deck of cards and wouldn’t give them back to staff. I looked at him, said “give me the cards” and he opened his lunch box and handed them to me. I was surprised he handed them over so quickly, but didn’t really think much about it beyond maybe he was growing up a little.

Until we got home and he rushed to his room – to pout, I assumed. When I noticed he hadn’t even stopped to get his pills and snack, I peeked in his room to see him dump out another (bigger!) deck of cards! The little turkey happily gave me the smaller set and kept the larger one for himself. While I did take them away and told him he had to take them back the next morning, I had to giggle to myself that he thought things through so quickly that he kept the larger one for himself and handed over the smaller deck. That’s a lot to think through – especially when I was waiting for him to hand the cards over in the parking lot. 🙂

As we were coming home one evening, Alabama’s “Dancing, Shagging on the Boulevard” was on the radio and Casey and Rob were both dancing in the car. When we got home, I heard Rob singing “Dancing, shaking that big ole barn!” 🙂 He rarely sings when I can hear him and I wish he would do it more – he has a beautiful singing voice – just like Casey does! 🙂

But, really, the coolest thing of all just happened a little while ago. Every year, I struggle to think of what he might like for Christmas. He will only say he wants “presents” with no comments beyond that. So, I guess what might make him happy and hope for the best. Today, though – today! He wrote a letter to Santa! The first one he’s ever written! I’m so excited and happy. It took 29 years – but it did happen!

And this proves what I’ve been saying for years – you never know when something will click and your child will have a new skill! It’s hard to be patient. It’s hard to keep going over and over and over the same things every day and not be exhausted. It’s hard not to be impatient and discouraged. I get it. I struggle with that every day, too, but it’s days like today that remind me all of that hard work is worth it. Honestly, Rob didn’t see the big deal in writing his letter – he looked at me like I had lost my mind. (And yeah – he might be close to the truth there! 🙂 )

And now, something else. Casey is struggling. Today was supposed to be Raylan’s baby shower and she’s having a hard time with not being an auntie today or having the shower. She had a major meltdown a few nights ago and is close to one again. She is laying on the couch listening to Christmas music as she tries not to cry. Rob just came in and sat down close to her and said, “It’s alright, Casey. It’s okay, Casey.” I could cry – usually when she’s upset, he laughs at her and says something like “no fits, Casey!” just to make her even angrier.

So please – keep dreaming for your child. Keep fighting for what they need. Keep your faith that one day, they will gain the skills that you are working on so hard right now. You never know when your surprise will come!