Tag: autism parents

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Autism and Very Real, Very Painful Sensory Issues

Autism and Very Real, Very Painful Sensory Issues

I’ve written many times about the sensory issues that Rob and Casey deal with every day. What continually shocks me is that people think their sensitivities are just made up – or that they are just being brats and doing what they want. Let me tell ya – I am furious when that happens!

Someone insisted Rob wear a different type of shirt to the fair last week. I wasn’t there to stop it. The heat index was well into the 90’s even in the evening. By the time Rob got home, he had blotches of red all over him and was swelled up. Thankfully, a cool shower, the AC and baby powder helped soothe his skin. He will never wear that shirt again.

Rob doesn’t choose to wear the same types of shirt because he is being a brat. He wears them because they are comfy and don’t irritate his skin. He needs those shirts to keep his anxiety in check. He needs to be accepted as he is – sensory needs and all! He is willing to try new shirts for short periods of time and that’s all I can ask of him. When he is ready, he will wear different shirts again. When that will be, I have no idea. But I’m okay with buying him what he needs to be happy.

He is often called a picky eater. While it does seem like it because there are so many things he won’t eat, it’s his sensory issues, not him just trying to get his way. Anything gooey will make him gag. He has tried new things in the last year and every gooey thing makes him gag. He keeps trying, but him eating pudding is just not that important. There are plenty of healthy choices that aren’t going to make him gag. It’s not that big of a deal. He loves fruits (fresh, not canned, tho he will eat canned pineapple) Vegetables, especially peas and corn on the cob. (He won’t touch creamed corn or peas) and most meats (except lunch meat like bologna).

He won’t eat most cookies or candy. He does love certain types of chips (like his mom! 🙂 ) He used to love spaghetti, but can’t eat it now. I’m not sure why – but I’m assuming at some point, the tomato sauce upset his stomach and he thinks it will every time he eats it.

Crowds bother him. He can handle them for short periods of time, depending on what he is doing. Certain pitches of sounds cause him pain, but that seems to be getting a lot better. He doesn’t feel pain from bruises or cuts. He doesn’t feel water that is too hot. I have no idea why he is so sensitive to the feel of clothing when he doesn’t feel other things. But – I don’t need to know why. I just know what he needs and that’s all that matters.

Clothes don’t bother Casey. She feels when water is too hot, but she also seems to not know when she is hot, if that makes sense. She wears heavy clothes on warm days, simply because the calendar in her head says she should. She doesn’t taste salt, so she wants to pile salt on everything. (I limit that!) She is more sensitive to sounds and will put her fingers deep in her ears to protect herself.

Gooey foods don’t bother her, but her doesn’t like to get anything on her hands, like paint or mud. She will let me paint her hands for a craft, but she needs to wash right away. She doesn’t feel pain from cuts, either. Several years ago, she was taking forever getting ready to go to Hopewell. When I opened the bathroom door to check on her, she was sitting on the edge of the bathtub with a box of band aids trying to stop the blood that was pouring from a 5″ cut on her leg. Apparently, her brand new mattress had a spring pop up thru it and she cut her leg in her sleep. It took 16 staples to close the cut. But – she never cried from the pain. She never told me about it.

It’s not always easy living with their sensory issues. I would love to see Rob in jeans and a flannel shirt. But it’s not going to happen right now and I can accept that. It might happen in the future – it might not. There is no way of knowing and that’s okay, too. It’s hard some days when her needs are completely different than his, but we figure it out. Probably not always in the best way, but in the best way for us.

Please, please – let your child do what they need to be happy and comfortable. I understand your frustrations, but how frustrated we are is nothing compared to the pain they feel at noises or touches. Our frustration may come and go, but their needs are constant. Imagine how you would feel if it was painful to be in certain restaurants because of the AC (Casey and Rob both avoided several places when they were smaller. We couldn’t use the AC in the car because Casey just cried.). Imagine your frustration if clothes were painful and you were forced to put them on anyway. You would have a meltdown, too.

I know parents worry about their kids getting the right nutrients when they will only eat chicken nuggets and pizza. Keep offering very small bites of other foods. And keep in mind that it might be the smell of the food that is the problem. It’s all trial and error. Yes, it’s exhausting, but you never know when your child might decide to try something new.

Your child’s sensory issues are real. They are painful. They are uncomfortable. They may just be an annoyance. Every person has different needs and to different degrees. Follow your child’s lead and let them be the amazing person they were created to be. Trying to force them to be something else will only cause pain and heartbreak for all of you.

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Autism and a Day of Fun

Autism and a Day of Fun

Every year, the last weekend in September is one the kids look forward to all year. It’s the week of our county fair and they both really enjoy it. The higher and faster they are spun on the rides, the more they laugh and the calmer they are. It’s a weird paradox that, for them, one this one day, loud noises, flashing lights and crowds of people are calming. (They aren’t to me! 🙂 )

We always go early so as soon as the rides start, Casey and Rob can jump on and ride to their hearts’ content without waiting for long lines. Rob’s favorite ride wasn’t there again this year, but he didn’t seem to mind and he even tried a new ride! It goes upside down and he has always hated that – it scared him. He still refused to try the Ferris Wheel or a ride that goes straight up and then drops the riders. Heights are not his friend. I wanted to point out that the other rides he was on were just as high, but he’s not stupid. He knows more about those rides by looking at them then I ever will.

I took Casey on the Ferris Wheel, even as it scared her to death. She hates heights, but the ride is there and she rides it every year, so it must be ridden again. I understand her autism reasoning and the inability to change her routine, but still….. I keep hoping that she’ll be able to relax the routine enough to understand she doesn’t have to do something that is too scary! I don’t see that happening any time soon, but then, I didn’t imagine Rob would ever get on something that would leave him hanging upside down, either.

the changes – they are coming so fast! Today, Casey was the one who was ready to leave. Rob wanted to stay and ride. As they got on their last ride, I told Tracie how much I hated this. If I made Casey happy, Rob was disappointed. If I made Rob happy, Casey would get mad. And she reminded me that every parent who has more than one child has been in that position! 🙂 I know that, but Rob seemed so happy and it’s so wonderful to see him smiling and to hear his laughter. It was hard to leave.

Once he had a snack, though, he was content to leave. I think after he got away from the noise and crowds, he wasn’t too keen on going back. I’m sure he would have. Or mostly sure, anyway, because going home after our snack has always been our routine and he follows routines as much as Casey – he’s just more able to change them.

It was so nice today to stand near them as they were in line and not have to hold hands or constantly say “wait” to Rob. They got on and off the rides by themselves and looked for Tracie and I once they came out of the exits. When we walked through the crowds, they stayed with us without hanging on tight. Another improvement!

Every year at fair time, it seems I notice new things they are doing or things they don’t need to do anymore. I see things all year, but at the fair, I seem to notice it more. Maybe because I’m always thinking about the year before when we go. I’m not sure and I wish I knew why Rob, especially, has changed and grown so much in the last year.

They have their annual check-up with their neurologist this week and I can’t wait to tell him how well they are doing. Last year, we were even able to reduce one of Casey’s meds and I’m wondering if that might happen again this year. Trust me – I was very worried about changing meds, but it didn’t bother her at all.

Today was such a fun day. Tracie and I had time to talk while they rode the rides – they laughed and had a wonderful time. The weather was wonderful and our French fries were so good! But, best of all – it was just like a typical family outing. I wasn’t hanging onto the kids – they were able to communicate what they wanted. Only another special needs family can understand how wonderful it was to just be another family having fun and not one that was stressing over everything that might happen.

I hope each of you gets to have a happy, fun day as a family soon – no matter what that might look like for you. Remember – my wonderful days won’t look like yours, so never compare them. Enjoy every happy minute with your awesome families! I’d love to hear about some of your fun days!

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Autism and Mood-Swing Moments

Autism and Mood Swing Moments

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

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

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

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

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

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

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

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

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

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

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Autism and the Dumbest Things I’ve Ever Heard

Autism and the Dumbest Things I've Ever Heard

🙂 🙂 I bet that title caught your attention, didn’t it? Maybe it even made you think of some of the dumb things you have heard or been told by very “knowledgeable” people – you know – the person whose neighbor’s sister’s best friend knows someone who has a child with autism.

I shouldn’t be proud of the accomplishments that my kids make. Yep – I’ve actually heard that. I’ve even been told that wearing my “Proud Autism Mom” shirt is just my way of begging for pity. (No, I didn’t go to jail that day – I merely told her where she could put her opinion 🙂 ) Apparently, when Rob wears a new shirt or Casey doesn’t get upset at a schedule change, I shouldn’t be happy and proud because those are things I should expect from them. Well, DUH. How about all of the hard work that went into helping them cope with sensory issues?

People are always excited when their child says their first word. It doesn’t make any difference if that first word came at a year old or five years old. Brag about it! Be proud and ignore the small minded people who have no idea how hard you and your child have worked to reach that goal!

They will eat when they get hungry. HA HA HA HA HA…. I don’t even want to know how many times I’ve heard that and I just laugh. Yes, I’m sure Rob will eat, but I refuse to be the one who forces food on him just so he can gag and I can clean it up. He is more willing to try new foods now, but many times, he will gag on it. I don’t eat certain foods – why in the world would I make him eat something (and who in their right mind thinks you can force someone to eat???) that will make him sick. I am darn proud of his ability to try new foods now and I refuse to hide that pride in him. Making him sit at a table until he eats something he doesn’t like just means that he will still be sitting there a week later.

Rob wasn’t always as picky as he is now. When he was little, he ate lots of different things. I am not sure what changed but he began to refuse spaghetti and pizza, then other things. I wonder if maybe the tomato sauce upset his stomach once (and once is all it takes!) and he is worried about trying it again. I offer it to him every time we have spaghetti, but he just can’t do it. And it’s not a calm refusal – it’s almost a panicked one. He isn’t just saying no, he’s scared I will get it close to him. I doubt I will ever know why he was such a picky eater for so many years. He just knew some foods were “safe” to him and that’s why he stuck with.

If you had a better night routine, they would sleep all night. Yeah, and if I dig deep enough in my yard, I’ll strike oil. For years, Casey couldn’t go to sleep at night. Then she got her days and nights switched and I spent every day fighting to keep her awake so she would sleep at night (which rarely happened). She was wound for sound and I could barely keep my eyes open. It’s a miracle we all survived. Then, as she began to sleep, Rob stayed awake.

I think he had a nightmare and in his mind, if he slept in his room, it would happen again, so he slept on the floor in the girls’ room for years. It drove Mandy crazy at times, I know, but even when he started the night in his room, as soon as he could, he would sneak upstairs and crash beside Mandy’s bed. By that time, I was so tired, I didn’t care where he was as long as he was asleep.

He did finally decide to sleep in his room again, but he was up 7 – 8 times a night. Luckily, he never tried to leave the house. For the most part, he just laid on his bed and “sang” for hours. I am so thankful he sleeps now. We still have nights every once in a while that one or the other doesn’t sleep, but that’s okay. I can handle that.

This is also why we do NOT change our evening routine very much. I’ve also been told that if I would change it every night, they would learn to adjust and sleep no matter what. Yep – that may be true, but I am not willing to go back to being a sleepwalking zombie every day. Nope – ain’t gonna happen.

Those “sensory meltdowns” would disappear if you just discipline them. Yeah and if someone smacked me when I didn’t like a shirt, I would belt them back. Their sensory issues are real and they are painful. It took me a long time to understand this with Casey. Remember, when she was diagnosed, there was no information about sensory issues. It was all about communication and how she would never talk to me or love me. (proved them wrong, didn’t we?? 🙂 )

The guilt I feel for getting upset at her during her meltdowns when she was a child will never go away. I hate that I didn’t know – that I yelled at her and that I cried in front of her. I hate that I had to struggle with her because she would grab my hands and want me to beat her head with them. (She needed deep pressure and still does, at times, but she has learned to find it other ways.) I hate that I let other people get mad at her. It’s a wonder she doesn’t completely hate me now.

She was 8 or 9 (Rob would have been 4 – 5) before I heard much about sensory issues in people with autism. Once I read about it, I started watching her (and him – he wasn’t diagnosed, yet, but I had concerns) I had always known her hearing was super sensitive (we had AIT done with her when she was 5 and it helped tremendously!) but didn’t know that her other senses were just as messed up. But, that’s a subject for another week.

I should not buy them what they like for their birthdays. Yep – I’ve been told that. I should buy them phones, tablets, new clothes, tools, jewelry – things that adults like, not Sesame Street things or Legos. I am keeping them childlike instead of forcing them to grow up and out of the autism (HUHHH???) If I would treat them like adults, they would be more mature. Yeah…. sure….

I need to let go and let them be independent. Apparently, the reason neither of them has many fears of danger is because I haven’t let them be independent enough to get hurt. Now, that’s just a stupid idea. I should let them get hit by a car so they know cars are a danger? I should let them jump in deep water so they know they might drown? Enough said about that.

I could go on and on about the dumb things people have said to me. I’m sure sometimes, they were really trying to help. And I do appreciate new ideas from anyone – you never know when your next great idea will come from. However – I am not interested in being told how I’m doing it all wrong. Unless you are me or my kids, you have no clue what our lives are like. Even another autism family has no real clue, as every person with autism is so unique and different. I can try to imagine what Cherie or Lillie or Mary Jo or Sandy or Audrey or Staci or Katie live with, but I can’t really know – even though we are all good friends and have been for years.

By the way – I’d love to hear some of the dumb things you have heard. I’m always ready for a good laugh! 🙂 🙂

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I Have Autism – I am not Deaf

I Have Autism - I am Not Deaf

I made a meme that said this last year – only I finished it with “you don’t have to yell.” Today, my thoughts are with the irritating people who say the dumbest, unkind things to the kids without thinking. This happened yesterday and Mama Bear came very close to ripping into someone outside of a store.

Tracie and I took the kids on a long hike yesterday. We walked over seven miles, with Rob and Casey in the lead most of the time. After our walk, we had supper and stopped at a store so Rob could spend his birthday money on signs and Casey could get a coloring book.

As we left the store, we ran into someone the kids know well. After Casey shared we had been hiking and I said how far we had gone, this person tapped Rob and said he was shocked we got him to move… implying he is lazy.

Let me tell you – it was all I could do not to lay that person out right there. I loudly told him how much Rob loves to walk and that we have to keep up with him. Then I said we had to go and we walked away with me muttering under my breath to Tracie.

How could he say that? Rob is not deaf or stupid. He understands everything that is said around him and he was hurt. I wish you could have seen the look in his eyes. This was someone he used to look up to – to have fun with and he hurt Rob.

Why do people do that? Why do they assume if someone doesn’t talk much that they can’t hear? Or if people with autism don’t show much emotion that they can’t be hurt?

I get it – people say things without thinking sometimes, but they apologize when they realize what they said. I’ve done it and I say I’m sorry. But, when you are talking to someone with autism, you need to be more careful!

Rob had a hard time letting go of what was said to him. Later last night, he leaned his head on me and said “Robbie good boy?” I gave him a big hug and told him he is always a good guy and to not listen to what others say. He held on to me for a few minutes before he went back to his iPad. I could feel the anger building again. I just wanted to smack that person.

I know Casey and Rob are always listening to what I’m saying. They may not look like they are paying any attention, but they are. At times, I swear they can read my mind – they seem to know about things that I am sure I never mentioned near them. I’m sure I thought I was whispering or that they couldn’t hear me over the shower running, but I guess I’m wrong.

Even if your child isn’t looking at you or even seem to know you are near, they do know! They are listening to you, even when they can’t acknowledge what you are saying or doing. Please, be careful what you say. Your words can hurt. And they may not be able to tell you they are hurt and need reassurance. That scares me – I never want Casey or Rob to think they are anything less than amazing and that they are exactly as God wants them to be.

I try to explain to them that people say things they don’t mean at times, but the kids are so literal and only communicate what is needed. They just can’t understand that other people aren’t like them. They don’t understand sarcasm. I don’t know why they have to understand when someone is mean – why can’t that be something they don’t know? Honestly, I think it’s more the feelings they sense, more than the words that are said. Either way – it hurts them and infuriates me.

Choose your words carefully and don’t be afraid to stand up to people who don’t talk kindly to your children. Let your inner Mama (or Papa or Grandma or Grandpa!) Bear come out and straighten them out. If they don’t like being told how to talk to your kids, tough. Your children are more important than anyone else!

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Autism and a Very Happy Young Man

Autism and a Very Happy Young Man

Last week, Rob turned 27! I’m still having a little trouble processing that my baby boy is 27. 🙂 Thank you to everyone that posted a birthday greeting on our Facebook page. While he wasn’t as excited about them as Casey was, she and I enjoyed reading them. 🙂

Do birthdays ever make you stop and think about how far your child has come? I felt that so much the night before his birthday. I kept picturing my little guy in his constant ball caps (first Mickey Mouse, then M & M, then Jeggs, and then so many others.) He wore them for years – everywhere – even to sleep. He stopped for a while, then started wearing cowboy hats. (He still wears his cowboy hat to camp – not sure why. 🙂 )

I can picture him running around in shorts and no shirt – usually barefoot. He always had his green or blue cup close by and a truck or two. He loved their swing set and trampoline and could be wild on both. He was definitely my wild child – I’ve often said if he had been the first one, I’m not sure there would have been anymore! He was in the ER every six months for the first 4 years of his life – stitches, seizure, a bad fall (that earned him a helicopter ride to a children’s hospital) broken collarbone.

When Casey was in preschool, Mandy and Rob were always together. She could talk him into doing anything (and still can!) For proof of that, I think of pictures I have of both of them wearing my old prom dresses – she is 4, he is 3. And he has the happiest smile on his face as he looks at Mandy.

Rob never had the terrible meltdowns that Casey did. He had issues that she didn’t though. The noises at school caused him so much pain. His teacher let him wear hunter ear protection (they also gave him deep pressure on his head) and warned him of fire drills or other loud noises. His aide discovered he could answer questions while on a swing and the school district bought a platform swing for his classroom. He did spelling, math, reading – all sorts of subjects while swinging back and back.

We did have an issue with a bus driver. She was nervous about him being on the bus and he knew it. At one point, she stopped to let other students on the bus and he jumped off along a highway. She was terrified, but he did eventually (thanks to other students, I think) get back on and continue to school. From that day on, the district paid me mileage to drive him to school each morning. (He came home with his sisters, so there weren’t any issues.) The next year, and until he graduated, he rode the bus with no problems.

He had the same aide until he went to the junior high. He missed her and still talks about “My Beth.” Luckily, he had the same teachers that Casey did, so he was familiar with them and they knew him. He also followed the same plan as Casey and slowly transitioned to Hopewell during his Junior and Senior years of school.

It wasn’t always easy for him. He had tough moments, especially when he thought someone was upset with him. (He still does that) He has a terrible time with anxiety. It’s only been in the last year or so that he is interested in being away from home or trying new things. He is finally learning to try new foods. He still doesn’t trust new people easily. But, the list of things he has learned has been incredible! When I think of how far he has come, I could cry for that sweet little blonde boy. But – he has grown into an amazing young man who loves deeply, laughs often and fairy dances when he is excited! 🙂

His birthday started with his favorite doughnuts and me singing Happy Birthday (Ok – he may not have been thrilled with that! 🙂 ). He went to Hopewell and then had Long John Silver for supper with Mandy and Cory. Grandma and Grandpa came soon after and he happily opened his presents. He even read his cards!

He was thrilled to see money and a gift card from McDonald’s. And a sign from Mandy and Cory that says “Little Dude” (that’s what she calls him!) Plus two more metal signs for his collection and plenty of paper and cards to rip up. As soon as he was done opening presents, he ran to get a hammer and nails to hang up his signs. Then he got comfortable in his recliner to start ripping up paper.

I let him enjoy that for a while before I asked him to come and blow out his candles. I made stop sign out of cupcakes for him and left several cupcakes without icing for him. He ran back to his room as we had cake. It may not have looked like a typical birthday party, but it made him happy and that’s all that matters to me!

When you are planning parties for your children, don’t worry about what a party is supposed to look like – plan it to keep your child happy. If they don’t like big crowds, invite one child. If they don’t like gooey icing, have cupcakes without it. Choose presents that they enjoy (like construction paper and index cards to rip up!) instead of what you feel they should want. It’s hard – I know that. Rob only asked for a party one time in his life and rarely tells me anything he would like. Keep your focus on your child.

You may hate that they aren’t having big parties like your other children, but would they even enjoy it? If not, then don’t stress over it. Celebrate the special child you have and let go of what you think they should want. You will both be happier!

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Autism and a Little Bit of Jealousy

Autism and a Little Bit of Jealousy

How many of you have looked at a friend or family member and thought they were so lucky? That it seemed their life was “all together” and perfect? (well, maybe not perfect, but easier than yours?) I have. But I always feel like I’m not supposed to admit it. Because to admit that I get jealous because my friends can stay at supper for as long as they want and I need to get home to keep the kids on their schedule makes it sound like I resent their autism. And that’s not it at all. SO – I’ll be the first to say it. I DO get jealous at times.

It doesn’t mean I don’t love all of my kids more than anything in the world. It just means sometimes, I get tired. I get tired of being on a schedule (we can change it a little, but too much and they don’t sleep and it’s just not worth it most of the time!). I get tired of helping with baths and showers. I get tired of shaving (though, since none of like doing that, it often falls by the wayside! 🙂 ).

It’s tiring to think about meals by what picky eaters will eat. (I’ve solved that by trying to make things that he will eat parts of – like homemade chicken noodle soup. I just keep some of the chicken for him.) I’m tired of her not eating leftovers. I’m tired of washing the same darn shirts over and over. I’m tired of worrying about the future for them.

Basically, I’m just like every other parent, special needs or not, in the world. We all get tired. The really crazy thing is – parents of special needs kids aren’t supposed to admit it. Because to admit we are tired sometimes makes other people think we mean we are tired of our kids. Sometimes, it seems we are held to a higher standard than typical parents – and that’s just not right.

If I’m irritated at my child for repeating Long Black Train for 7 hours, I should be able to say that without being judged for not being more patient with my “poor son with autism.” But – if a typical child is being a pain in the butt repeating something, it’s okay for the parent to get mad and send them to their room. Why the double standard?

Why is it okay for a typical parent to be tired of running their kid to every activity known to man, but it’s not okay for me to say I’m so tired of helping with baths (I’ve been doing it for 31 years – give me a break! 🙂 )? As special needs parents, we need to be able to say we wish things were different at times. Typical parents can say they can’t wait for their child to get out of the terrible twos’s… why can’t we wish for potty training or for our child to sleep through the night without sounding like we want a different child?

I don’t want different kids. Casey, Mandy, Rob and Cory are the most amazing young people you would ever hope to meet. They have all fought obstacles (and won!) that most people couldn’t even imagine. I am so proud of each one of them and am sure they will all reach their dreams. (Even if I have to push them the whole way! 🙂 ) But – I should also be able to say I want to get groceries without taking Casey and Rob with me.

Yes – it is a million times easier now than it used to be. But – I want to get in the store and get out without wandering around looking at crayons and socks. I just want to get what’s on my list and go. And – it gets expensive taking them at times. And it’s hard to think about what I might need or decide if a sale price is really a good price when he is humming, rocking and blocking the aisle and she is trying to put stuff in the cart because mom is so blind she will never notice. Yes, it’s easier than it used to be (she ran off more times than I can count and he cried – sensory issues) but that doesn’t mean I want to do it!

When I look back and see how far they have come, I feel guilty for wanting more at times. I would love to be able to go to sleep when I’m tired instead of needing to wait until they sleep. I would love to be able to run to the store for sugar without taking them and spending an hour there. But, there’s that guilt again. Because we do a lot of things now we never used to be able to do.

We do go shopping. We go out to eat. We go hiking and new places to swim. We went on a vacation this summer. They both graduated with diplomas. He wants to try new things – she wants to go go go! He is willing to wear new shirts. She doesn’t meltdown when the schedule does change. Life is good!

I just want all of you to know that it’s okay to be jealous at times. Every parent is and just because we have special needs children doesn’t make us different in that regard. Just don’t let your jealousy shadow the amazing people your children are! Remember that every parent in the world is jealous of other parents at times. Your family may have special needs, but other families have needs, too. They may be dealing with issues that you can’t imagine – a death, finances, drugs.

So don’t feel guilty if you feel jealous once in a while. And don’t let anyone else make you feel guilty, either! Just keep in mind how awesome your kids are – just the way they are! Allow yourself a few minutes to think “Wow – I wish….” and then move on to happier things.

And now it’s time to start our evening routine. Have a great week! 🙂

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Autism and Five More Minutes

I heard a song on the radio the other day about wanting five more minutes – a high school football player knew the next time he came to the field, he would need to buy a ticket and asked his coach for just five more minutes to play. There were other examples of wanting five more minutes and the song really spoke to me. There are lots of things I want five more minutes to enjoy.

I had supper with a group of mom friends last week and the subject of grandchildren came up. The moms who have grandkids talked about how much they appreciate their grandchildren and how it seemed they didn’t have the same appreciation for the time when their own children were little. One mom said she thought she was just too worried about everything else – the house, the bills, etc, and the other ones agreed. I didn’t say much, because I think that, while autism does bring a lot of joy to our lives, it also robbed me of being able to truly enjoy Casey, Mandy and Rob when they were young.

Before anyone gets the wrong idea – I’m not wishing that they don’t have autism. I’m wishing that I had realized a long time ago that there were more important things to spend time doing than worrying about what I can’t change. I know most parents wish for five more minutes with their children. I’m not sharing regrets, really – just an observation for those of you who are new to this journey or have children. Autism will try to take over your life. Some days, it will. Just don’t let it become the only thing you notice every day.

I know I spent a lot of time with the kids when they were little. We finger painted, we did crafts, we played outside, we made cookies. But, I want five more minutes of listening to Mandy tell her stories, while Rob listens to every word she says. I want five more minutes of watching them jump on the trampoline – laughing and trying to bounce each other off. During those times, it was impossible to see autism. All you could see was three siblings having fun together – and often begging me to spray them with the hose while they jumped.

I want five more minutes of reading books to them as they cuddled in blankets before bed. Even if Casey wasn’t interested in the books, she lay quietly and listened. We read the whole Little House series when they were small – a chapter a night. I want more time playing horses with Mandy without needing to sit and listen for the other kids. I want more time watching Mandy and Rob try to beat each other to the furnace register on cold mornings before school. I want to just watch them and not be wondering how his school day will be or whether Casey will get upset at school that day.

I want five more minutes of watching Casey walk her figure 8’s in the back yard (for 3-4 years, she wore a path in the grass) – minutes where I appreciate her happiness and not grumble about the fact she won’t stop until she completes a certain number of laps, even when I’m trying to get us in the car to go somewhere. I want five more minutes of listening to the Coyote Ugly CD while I drove Rob to school every day – he was so happy that he got to choose the CD before his sisters voiced their choices.

There were days that autism did take over our days – more of them than I care to remember. That can’t be helped, but – you can work towards making sure it doesn’t completely take over your life. When autism is all you see, hear and think about, you won’t be happy. If you live an unhappy life, your health will suffer – then who will take care of your child? You have got to take care of you so you can be the best you can for your child.

You will probably always wish for five more minutes of something – everyone does. Just try to focus on the positives in your life with autism instead of being sucked into all of the bad things all of the time. You will definitely have more regrets if you live your life hating autism or wishing it never happened to you. Get through your dark days and move on. Look for the bright spots even during terrible days. It can be done – I promise you. And sometimes, your bright spots might just be funny things. I remember during one of Casey’s meltdowns thinking that at least I hadn’t replaced the glass in the door, yet, so I knew she wouldn’t be breaking it with her head again. Nope, it wasn’t funny at the time, but now I can laugh that I was even thinking that at the time.

Make sure that during your day, you do things for you! I know you are busy and some days, you probably feel like you can’t squeeze anymore into the day, but I also know from experience that you and your child will be happier if you do take those five minutes. Put headphones on and listen to your favorite music while your child plays. Savor that morning cup of coffee. Sleep in your child’s room, if you need to, but sleep! Let yourself be in the minutes while your child splashes in the bathtub instead of worrying about the mess.

Maybe after practicing being in the minute, you will be saying you want five more minutes of listening to your child talk about power rangers or birthdays. Because, even with autism, they grow up too fast. Autism will always be there, but it will change. Dark days do get better. And you will want those sweet memories of your sweet little one.

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Autism and Tips for Back to School

Autism and Tips for Back to School

This picture was the first day of school for Rob’s senior year. (I’ll admit – I got a little teary-eyed about no more first days of school!) But – I’m not gonna lie – I am so glad that my kids are done with school! I miss the teachers they had – and wish every child had amazing teachers like that, but I don’t miss the worry and the stress. I don’t miss buying hundreds of dollars of supplies and clothes. I don’t miss wondering if the other kids were mean to them. I think Rob, especially, likes his routine to stay the same. As much as he misses Mrs. Kaser (he still talks about ALL of the teachers and aides he had!), he likes knowing that his routine won’t change.

For those who are dreading back to school, I do have a few tips to help.

  1. Get to know your child’s teacher, aide and bus driver. Really – get to know all of the staff at your child’s school. Share your child’s favorite things and always, always be sure to tell the teachers what your child doesn’t like! It isn’t fair to them or your child for you to not share that. Let the teacher know you are always available to talk with him/her about issues that will come up. If you have concerns, share those, too. Only your child will suffer if you don’t keep the lines of communication open.
  2. If your child has a rough night, text the teacher and let her know that. She will know that that day may not be the best one to start new lessons – it might be best to just go with the flow that day and start fresh the next day.
  3. Always, always share anything that happens at home that may upset your child with the teacher! You may feel some things are private, but a death or divorce in the household will upset your child and the teacher needs to be aware of it.
  4. Share your best ideas with dealing with your child’s behaviors. If you know weighted vests help, tell the teacher. If your child needs ear protection for loud noises, tell the teacher. The more you share, the better your child’s school day will go! If your child insists on wearing the same shirts all the time, who cares? Share all of your child’s sensory needs with the staff at the school – and be sure the bus driver is aware of them, too! (I have no idea why bus drivers and cafeteria people are not always included in the loop – they are with your child every day, too!)
  5. If your child is little, you may want to talk to his/her class about autism before they go. You don’t need to share a lot of details, only that your child may not talk to them, but would love to have someone to play on the swings with or color a picture.
  6. If you have something to tell the teacher, send an email if it isn’t a pressing matter. Remember that every time you interrupt the teacher, that’s time you are taking away from your child and the other students. If your information can wait, send the email and be patient for a reply. While your focus is only on your child, the teacher is doing his/her best for many students and they want to do their best for each of them.
  7. If there is a problem, talk to the teacher. If you don’t get results, talk to the principal. It’s okay to be the parent the school is tired of dealing with. I’m quite sure my kids’ school district was as happy as I was when Rob graduated. I never meant to be a pain in the butt (well, okay… yeah… there were a few times, I meant to be – and I would do it all again! 🙂 ). Keep talking until you get help.
  8. If the problems are still not resolved, get your county or state board of developmental disabilities involved. And remember, nothing can be fixed as quickly as you want it to be. Be patient.
  9. Be nice until it’s time to not be nice. Nice will always get you farther – but some people need you to not be nice to get their undivided attention. I slapped my hand on the table in the middle of Casey’s IEP when she was little and demanded the district’s special education coordinator pay attention and quit playing with his pen and other folders. He never made the mistake of ignoring my kids again. 🙂 🙂 And we became friends!
  10. Try to relax. Your child will feel your anxiety and will react to it. (Yeah, learned this the hard way!) Assume the year will be awesome until you have to think it isn’t.

I hope each of your children has a wonderful first day back to school! Enjoy the peace and quiet. Rest if you can – do something you can’t do when they are there (sleep? read? shower?) and leave the laundry and housework. It will be there tomorrow.

Just like with doctors and therapists, remember that you are your child’s best advocate! You know your child better than anyone else! If you think something isn’t right – investigate. You can visit your child’s school anytime – drop in at an odd time and see what’s going on.

Good luck! And be sure to say “thank you” to your child’s teachers and other staff. Your appreciation will go a long way!

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Autism and Keeping Hope Alive

Autism and Keeping Hope Alive

If you follow our Facebook page, you have probably seen that we’ve been trying lots of new things this summer and most have worked out better than I could have hoped. I wish I knew why – I would gladly share it with everyone, but I don’t. My guess is probably simple maturity for Casey and Rob and the fact that life isn’t one long stressful, what’s-going-to-happen next kind of time anymore, so I’m not exhausted. We have more good days than bad – and even the bad are more “rough” than bad.

Yesterday, we went to a car show. Casey reminded me all week about it. Cory has a trans am that he shows and the kids love to go see it at shows. We weren’t there very long (honestly, while they both look at the other cars, once they see Cory’s, get a picture taken with it and buy a drink, they are ready to go). But – we went! A few years ago, I probably wouldn’t have attempted that without another adult. I simply couldn’t trust that neither would dart away – or that one would want to look at something and the other wouldn’t stand still for it.

We head to the park often to walk. We go to stores (though, honestly, if I have a long list of stuff I need, I don’t take them – finding everything and keeping them with me just takes too long! 🙂 ). Also, we tend to take up an entire aisle, as Rob holds my right hand and Casey my left elbow when we are in crowds. I keep telling them I promise not to leave them, but they feel safer holding on. They will even hold hands with each other when they are anxious – I do love seeing that! Again, a few years ago, I took them in stores only if there was a desperate need. Casey wouldn’t wait for me and Rob’s sensory issues were terrible.

I remember taking Rob to the store when he was younger. He hated the lights – the noises – almost everything about going to the store and he often hid in the cart the entire time. I think he was 8 – 9 and still climbed into the cart (in the big part, not the child seat) and pulled his coat over his head. We were in Wal-Mart one day and it was not a good one. I was tired and on the verge of tears – just wanted to get what we needed and go home.

As we passed a woman with two boys, I noticed the boys pointing at Rob and laughing. My anger flared, but Rob didn’t seem to notice so we went by. Unfortunately, we passed them in the next aisle – and one of them was dumb enough to make a loud comment about him being too big to be in the cart – was he a baby? Rob looked at the boy, back to me, and buried his head in his coat. And Mama Bear appeared.

I loudly (so the boy’s mom could hear) said ‘my son has autism and the lights in the store hurt his eyes – but people like you hurt him more! I hope you never have someone make you feel like you just did to him”. By then, his mom was coming towards us and asked what was wrong. I told her what happened and she was so angry with those boys. She gave them both hell right there and made them apologize. She was almost in tears as she promised to have another talk with them when they got home. She looked right at Rob and said she was sorry. I bet those boys don’t forget that! 🙂

Anyway – while Casey was more likely to run away from me, Rob just couldn’t handle the sensory overload. It was just easier to leave them at home. There are still days that I wouldn’t attempt to take them both to the store – if he’s already anxious or she is on edge, we stay home!

When Casey was small, we couldn’t use the AC in the car – the noise made her scream every time. There were several restaurants that we couldn’t go in because the heating/cooling noises were just too much. I couldn’t take them to a pool because she would get into other people’s coolers and he wouldn’t stay in the shallow end. Plus keeping an eye on Mandy, too. (That’s a big reason we had a backyard pool for years – I miss it so much now!)

In the last few weeks, we’ve gone to two different public pools (including the one where Rob got stung two years ago and he hasn’t been able to let go of his anxiety to go back) and enjoyed every minute. We went on a short vacation and there were no meltdowns, no anxiety. Just an amazing time. We went to a family reunion. We went to a birthday party. We went to a cookout. We’ve hiked, we’ve gone shopping – so many things that other families take for granted – we did.

I will admit – I plan like crazy for some of our outings. I try to think of everything they might need to be successful, but that’s still better than planning what we need just to do it! And I keep an eye on them constantly when we do go places. I watch for signs of anxiety in Rob and for Casey to get into things she shouldn’t. But – I can let go of their hands and I can visit with people! It took years of hard work on their part and lots of other people, but we finally can do some things. I have had so many summers that I was depressed when it was over because I didn’t think they got to do enough fun things, but this year, I think they have. And that makes me feel so good!

I want them to experience everything that they want to try. Right now, Casey is repeating Zoombezi Bay over and over and over. It’s a water park beside the zoo – I have no clue why she thinks we are going there tomorrow, as I’ve never mentioned it and honestly, don’t see us ever doing. (But I won’t say never! 🙂 ) Rob doesn’t want to go there – he wants to go to Hopewell tomorrow and is happy that he is getting what he wants.

When I think of how scary and nearly impossible it was to go so many places when they were little, it’s a miracle to me that we are able now. This is why I want you to never, ever give up hope. Your miracles will be different than ours, I’m sure, but they will happen. We’ve had so maybe little miracles in our lives!

Rob stopped “eating” his shirts! Casey stopped having meltdowns! Rob will try new foods! Casey wants to go new places! They are both sleeping (shhhhh! I don’t want to jinx that! 🙂 ) They both graduated from high school with a diploma. Rob is more wiling to go new places, with lots of supports. Casey never hurt herself when she broke windows with her head. Rob survived all of his accidents. Despite everything, Mandy grew up to love and cherish Casey and Rob (and married a guy who does the same!).

You will have little miracles, too. When you are so tired crying takes too much energy, remember that. Your happy times will be different – maybe your child finally leaves her clothes on! Or your son learns to use the potty. Maybe your child learns to say “hi” using a speech app or learns sign language. Don’t ever judge your journey by comparing to anyone else’s. Our journeys will never look like, nor will they occur on the same timeline.

Also remember that it truly is the little steps that matter. Other families may not understand my joy when Rob wears a new shirt, but that’s okay. Our life is special to us and we don’t need their joy when we have our own. I also know it’s damn hard to see any miracles at times. When your life is 24 hours of stress, it’s nearly impossible to see small steps. You want the big, huge ones! I get that – but you can’t get the big ones without the little ones and some days, a little miracle can go a long way towards bringing a smile to your face instead of tears.

I know I’ve said this many times, but please, please – never give up hope. When you are so tired you can’t see any hope, find help. There is help available (and I know how hard it is to find!) keep looking and making calls and get that help. Beg someone you trust to let you take a nap or to get groceries for you. I hate asking for help, but I do – and you need to do the same. Look for your small miracle every day as you tuck your child into bed at night (and look again every time you have to send them back to bed or remind him to stop singing Long Black Train cause Casey is trying to sleep! 🙂 )

If you are reading this and you don’t have a child with autism, maybe you could be someone else’s miracle. Offer to sit with the child while the parent takes a shower or a nap. Take lunch to someone or even send a card and tell them they are doing an awesome job! You have no idea how much random texts from friends help me some days! You can be that miracle! 🙂