Category: autism parenting

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Autism and Being Thankful

Autism and Being Thankful

Years ago, when I did the children’s chats at church every Sunday, I would always ask the kids what they are thankful for. The catch was – it had to be something others might think was silly, but that meant a lot to the kids. It was always interesting to hear what they had to say, but it was also a surprise at how hard it was to get them to open up about silly things they were thankful for. So this week, in the spirit of the season, I’m going to share a few things I’m thankful for this year.

  1. We all survived the time change. For anyone without a child with autism, that may seem silly, but oh my God. Time change week is never fun. The only good thing is that the change in the fall makes Casey and Rob want to go to bed earlier. But, not necessarily to sleep… they lay there and talk and sing and then when it is time to be quiet, they are too wound up to sleep. Time changes suck and I have decided to convince the Ohio legislature to do away with it (there has been a bill laying around for a few years) by taking Casey and Rob to every politician against doing away with it and say “Here ya go – enjoy time change week!” and leave them. The bill will be passed in a day or so! 🙂
  2. I got a list of “wants” from both kids this year! Last year was the first time Rob ever told me anything he would like to have from Santa. Signs, of course. For his birthday in August, he asked for certain colors of Legos. A few weeks ago, he said he wanted signs, but this morning, he added a railroad, Legos and crayons! Casey gave me her list weeks ago and it was basically the same one she has given Santa for years – only the colors of the shirts she wants change and the stuffed Sesame Street character. If you can’t get a list of ideas from your kids, please don’t think about their actual age – buy what they would like. Casey and Rob will get lots of things that are no where near age appropriate, but that will make them happy. And that’s your goal, right?
  3. While I will never get rich teaching preschool, I am thankful that I can work a few blocks from the kids’ day hab and that I am able to be home with them until they are picked up each morning. I’m also grateful that my co-workers are so understanding when I’m exhausted from too little sleep or frustrated about service issues. And if I need time off to deal with those problems, it’s not a big deal. Every time I think I need to look for another job, I think about those facts and know that I need to stay right where I am. 🙂
  4. Speaking of their day hab – I am so thankful they both love going there and that they are given so many opportunities to do things that they enjoy. I’ll admit, there have been bumps here and there, but right now, Casey and Rob are both happy to get on the shuttle in the mornings, so I know they are excited to be going. Casey can volunteer to her heart’s delight and Rob can join in whatever strikes his fancy that day. It wasn’t too long ago, he spent his days in his therapy swing, basically hiding from everyone. I am constantly reading stories of other families who are desperate to find somewhere for their adult child that will serve their needs. We have several options in our area, but many places have none – or waiting lists that are years long. For a small town, we do have a lot of day hab options.
  5. I am thankful that we all enjoy long hikes together. For many families, actually doing things as a family is difficult if not impossible. Casey and Rob both love hiking and it’s something we can all do together – not to mention the amazing exercise we get! It took years to get to this point. We are finally able to try new things and see how it goes. Last summer, we were able to get away a few days without Rob stressing the entire time.

All around us, we are hearing statements telling us to share what we are thankful for – things we are grateful for. It’s just that time of year. I urge you to look around you and find things to be thankful for, too. I know that in the midst of sensory meltdowns, fighting with insurance companies, little sleep and the stress from every day things, it’s hard to think of anything to be thankful for. But, every day, find something small. There were times I was thankful I could walk downstairs and get the laundry without a screaming meltdown because I disappeared.

I was thankful that neither of them tried to leave the house during the night. Neither played with knives, fire or cleaning products. As much as I got tired of their routines, at times, I was thankful for those same routines. Look around you – I’m sure there is something that you can smile about today. Maybe you got to go to the bathroom for a few seconds or got to have a cup of coffee while your child watched TV. Maybe your child didn’t cry at his new shirt or your daughter was able to give you a quick hug. Enjoy those times – relive those beautiful moments and say a quiet “thank you.”

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Autism and the Individual Service Plan

Autism and the Individual Service Plan

Last week, I met with Farrah, County Board of DD (their SSA) and Khisha, Hopewell, to plan the “outcomes” part of their annual ISP (Individual Service Plan). These plans are to make it possible for a complete stranger to come into our home, in the event of an emergency and know everything they need to take care of Casey and Rob. (Yeah – anyone else laughing? 🙂 ) It’s a great idea – and some of the info would be helpful, but unless you actually live here, a daily plan is nearly impossible to write. Farrah mentioned she would like to see it – so here we go!

A typical weekday morning – I am up first and shower (and lay out her hairbrush, toothbrush, toothpaste and deodorant) before I get Casey up. Before I go up to wake her, I set out her pills and juice by the refrigerator and either get out a yogurt or the toaster for waffles. If it is waffles day, her plate, butter, syrup and fork are all on the counter, too. Rob’s pills, koolaid and breakfast (three waffles and fruit, if it’s a waffle day – a pack of Brown sugar cinnamon pop tarts and fruit for other days) on the counter by the sink. And his deodorant. Many times, she is awake when I go upstairs, but some days, I need to encourage her to get out of bed. I also have to say “good morning” to whichever creature she slept with that night – right now, it’s “da biggest big bird” but that changes on a schedule I haven’t figured out, yet.

She runs down the steps, puts her clothes in the bathroom and gets her pills and juice. She reminds me if she needs a packed lunch that day. I pack lunches while she gets dressed and start her waffles when she leaves the bathroom. After she gets her shoes on, she goes into the dining room to get her three quarters for the day, then runs upstairs to get her coat and then I can brush her hair – never before she has her shoes on and her coat in hand. While she eats, I take Rob’s breakfast and pills to his room.

Like his mom, he prefers to be left alone until he is a little more awake, so he enjoys his breakfast in peace, then gets dressed (right now, he is only wearing red shirts!) and his shoes on. He grabs his coat as he leaves his room, throws his cup in the sink in the kitchen and checks the pantry for interesting snacks, if I forgot and left the door open. He grabs his quarters (that he never uses!) and sits in the recliner. She sits on the love seat and goes back to sleep while he insists on channel 10 on the TV (that he never watches) and checks his lunch box for the required items. (at this point, an orange, an apple, fruit snacks, pop and another fruit)

When the shuttle comes, they both run to the door and he starts “singing” as soon as he gets to the shuttle. (I’m sorry, driver – I have no idea why he’s doing it!)

Before they get home at 3, I put her pill, drink and a snack beside the refrigerator and his by the sink. She usually gets a cup of fruit or a yogurt. He wants three “big pretzels” (only the rods of a certain brand from one store in town!) but is okay if I am out of the pretzels to have cheese crackers (but again, only a certain brand!). When the shuttle drops them off, he starts “singing” as soon as his feet hit the ground. She runs through the house to put her shoes in the closet and then upstairs to hang up her coat. She may or may not come right back for her pills.

He empties his lunch box (with reminders!) grabs his iPad, pills, snack and juice and goes to his room. (If he runs right to his room, I know he has something he isn’t supposed to have – he thinks he is being so smart! HA!) He will sit in there for a few minutes before he comes back to say hi. She takes her pill and drink and sits on the love seat, then goes back for her snack. Then, she may lay down for a while with her iPad or go to her room and fold socks. She will also ask what is for supper and gets irritated if I don’t have an answer ready for her.

They both enjoy free time until supper. I make one plate, then the other and as they start to eat, I fix my own, then give one seconds, then the other (small amounts!) and finally sit down to a meal that I don’t even want anymore. If we are having something Rob doesn’t care for, he makes something for himself (frozen pizza rolls are his go-to thing right now – but only at home and only a certain brand!)

After supper, she goes out to the patio and sits on the swing, sometimes for an hour or more. Between 7:30-7:45, I tell her to start her bath water – she says “no” as she is getting up to do it. While her tub fills, I get out their pills and drinks again, then help her wash her hair and ask what she wants for a snack. It is waiting for her when she comes out of the bathroom. She eats and goes to her room. I tell Rob it’s shower time and start his water for him (he will burn himself) and help him wash his hair. (I also remind him he has more body parts than his face and under his arms! 🙂 )

I ask him what snack he wants, but he usually tells me before his shower. It’s waiting when he gets done and then he goes to his room, too. If his iPad happens to be dead, he might sit in the living room with me, but he only wants to watch ESPN – and it doesn’t matter what is on – that’s what he wants!

At 9:30, I take both iPads and tell them good night and that I love them. Do they go to sleep? Nope, but I need quiet time to chill out and this routine is helping Rob sleep better. I don’t want to change it too much for fear of what may happen! 🙂

Our schedule doesn’t really change on the weekends, except they sleep as long as they would like. Otherwise, pills are waiting, meals are the same, bath times are the same and bed time routine doesn’t change.

The funny thing is, when they sleep at my parents’ house, none of this matters to them. They keep basically the same schedule, but don’t get stressed if it isn’t exactly. And Rob will eat snacks there that he refuses here.

And during all of this, we have to always keep in mind the “rules” of our house. I wrote two blogs about them – for laughs, here they are – Autism and Our Very own Personal Rules to Live By and More Never to Be Forgotten Rules of our Autism House . The funny thing is, so many things in our lives have changed (and can change in an instant!) but these rules have applied for many years. Both of them have eased up a little in the rules, but not enough to say they aren’t rules anymore. Just more fun and excitement in our happy little circus!

Have a wonderful week! 🙂

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Autism and the Difficult Topics of Conversation

Autism and the Difficult Topics of Conversation

Another autism site I follow recently posted that her mother was very ill and wouldn’t survive more than a few days. She took her 14 year old son with autism to see his grandma in the hospital and let him say goodbye in his own way. He and his grandma were extremely close and mom felt it was important for him to do this. The backlash I saw on her post was immediate. While some were supportive of her and expressed their sympathy, others were calling her a terrible mom for putting her son through that. I was shocked.

Autism is not easy. It’s never a cut and dried decision that lasts. When my children lost their great grandpa, he was in the care center and they did go visit him a few times – when he was still himself and able to talk to them like always. I think Rob knew what was happening, but I doubt Casey did. When my grandparents died, they weren’t in a hospital and it wasn’t something that we knew was coming. Losing their grandpa a few years ago was harder on them, but also easier, as they both knew he was going to Heaven to be with his dad and mom. He was sick for a while and they saw him in the nursing home, but not the hospital.

Casey and Rob seem to take death in stride. They were both upset about not seeing them until they get to heaven (they both know Heaven is a place, but they don’t always understand why we can’t go and come back, like a vacation.). When someone dies (or when we lost our dog Eve a few years ago0, I simply told them the truth. That Eve was very sick and she died. That grandpa Bill was very sick and he died. And that they were both in Heaven now, with God. Casey talks about Heaven often, Rob – not much. But, of the two, she is more likely to talk than him. He is more likely to talk about the person – Eve, Grandpa Jones.

I didn’t know what they would understand. They are smarter than most people give them credit for because they don’t talk much. I have no idea if I told them the right things to ease their missing that person. It doesn’t seem that I scared them and for that, I’m grateful.

The thing is, autism or not, there are difficult things you need to talk to your child about. Will they understand everything? Who knows? But if you don’t talk to them, their minds will decide for them and what they think up may be the worse thing ever. (For example, I would never tell them someone “went to sleep” when they died – they might think if you sleep, you never come back and God knows we have enough trouble sleeping without that, too!)

When their dad and I divorced, I was really at a loss to explain that to them. Finally, I decided to give them no details – only what would directly affect them. I simply told them that Daddy would have a new house and that they could go see him as much as they wanted. Mandy, of course, had more questions and I answered those as honestly as I could. What Casey and Rob thought about the divorce is a mystery as neither as ever mentioned it to me. I didn’t know what to say to them, but it wouldn’t have been fair for me to not tell them it was happening.

Talking to Casey about her period was another tough topic. But, again, I told her a very simplified version of what was happening. She only said, “Boys?” and I told her no, that boys don’t have them because boys don’t have babies. She’s never mentioned it again. They both know boys and girls are different, but neither seems to care. They have little interest in the opposite sex, though Rob may grin at pictures of women once in a while. 🙂

Drugs are another thing you may need to discuss with your child. I have talked to mine, but since Casey refuses to take an ibuprofen for a headache because the doctor didn’t tell her she could (tho, at our last visit, their neuro wrote in his orders that Casey could take an ibuprofen for a headache and to ask mom for one when she needs it, so she will now. How cool was that of him?? 🙂 ), I know she won’t take anything from anyone. Rob will take ibuprofen, but only from me or Mandy. But – they are also very sheltered. Your child may be higher functioning and may have friends say “try this, you will like it!” and do it. You have got to talk to them. You don’t need all the answers – only to talk to them!

Even talking to your child about their autism is important. Imagine knowing you are different, but not knowing why and no one will tell you! How scary is that? When Casey was 8 – 9, we were talking about autism (actually, it was IEP time and I told her I was trying to think what she would like to learn – not really expecting an answer, but you never know!) and she said “hurts my ears.” She couldn’t explain more, but I took it to mean that to her, autism meant her ears hurt. Too many loud, deep sounds and she just couldn’t handle it some days. She has always had the more sensitive ears of the two of them. His are sensitive, too, but not to the degree hers were. (AIT – auditory intergration therapy helped her a lot!)

Just because your child has autism doesn’t mean you don’t have to have the difficult talks with them. You will need to talk to them at their level. Decide what you want to tell them, break it down into simple sentences and do it. You don’t even need to do it all at once! A minute here and there will accomplish the same thing as an hour lecture that they may tune out anyway. You have to tell them about death, drugs, divorce, strangers. It won’t be easy or fun (but is it easy or fun with typical kids, either?? nope!) but that’s your job as a parent.

Obviously, depending on your child’s functioning level and your lives, there are some topics you may get to avoid. Maybe divorce isn’t something you need to talk about. If your child is lower functioning, maybe drugs aren’t something you need to discuss. But, death will happen. Please don’t leave your child wondering why someone never comes to see them anymore! Remember that just because your child doesn’t talk, it doesn’t mean they don’t think! They know more than we realize (as I’m constantly finding out!) and it’s unfair to them not to know what is happening in their lives.

Remember – short simple talks. You don’t need to share a lots of details, unless they ask. And always be ready to answer questions if they are able to ask. Autism or not, you are a parent, first – there’s no avoiding the hard talks! 🙂

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Autism and a Special Night of Fun

Autism and a Special Night of Fun

Every mom knows that finding time to do things for yourself is nearly impossible some days. When you have a special needs child, the challenge is even greater. A few nights ago, Camp Echoing Hills had a special “Mom’s Night” for moms of kids with autism and other special needs. They even offered care for kids so moms could enjoy the time together! To say I was excited to go is a huge understatement!

I wasn’t sure how Casey and Rob would do going to camp on a Friday and not spending the night, so I asked my parents to watch them. They even kept them all night so I could stay at the dinner as long as I wanted to! And get a whole night of sleep when I got home . I’m not sure what I was more excited for!

My close friend, Cherie, and I were going to go out to the camp together. We had read a few posts about what Lauren and Emily had planned, but honestly, the chance to eat a meal in peace and quiet (and one we didn’t have to make!) was so exciting, we weren’t really thinking about what else they may have planned.

When we got there, the room was decorated with fall things, white lights were strung on the beams of the ceiling and a fire was in the fireplace. Amazing! And then we saw the food – oh my goodness – the food! People who work at the camp and the residential part donated food for us. Chicken sandwiches, salad, bread, cheesy potatoes…. and then the desserts! And all we had to do was fill our plates and enjoy every single bite! No worrying about the kids or waiting to refill their plates and watching how much they ate (and yeah, I ate more than I have in weeks! 🙂 ) Many nights, at home, I fix one plate, then the other and often, the first one is done and wants more and then the other wants more. My food is cold and I could care less if I eat it. Just eating slowly and talking to other moms and enjoying every bite was enough of a treat!

But then, they played a getting to know you game which brought some laughs. And we made a hand scrub to soften our hands. It felt amazing – and I’ve used it on my feet, too – works amazing! And they had women to give us manicures (when was the last time I had one of those?? hmmm… years! I usually just slap some polish on – if I find time for that!) And those ladies were so kind and fun to talk to. And while some of us had our nails done, others were getting facials and lip scrubs. Then we switched. I have no idea when the last time I pampered my skin like that was. I always plan on doing it, but something comes up and I don’t get to do it.

We got to visit with other moms. Moms just like us who have little time for things other people take for granted. We got to brag about the accomplishments our kids have made and to encourage moms with younger kids. (and that’s so important – our lives can be lonely and scary at times) I heard stories about how Rob and Casey act at camp – what they enjoy and their friends’ names. So many ladies came to me and told me how much they love Casey and Rob – how much fun they are to be around. I was ready to cry – to know that others see how beautiful and awesome and funny and loving they are was so wonderful. I always worry that their quirks might make it hard for people to see their true selves – this is proof that the real Rob and Casey are seen! So much love!

Cherie and I saw pictures of our boys from the first time they were at camp together. They were both so little – small enough to sit on the bottom bunk and look at a book together. We saw a picture of them drawing pictures together. They were so young and looked so happy!

We stayed the whole evening and loved every minute. And since the camp is a 20-25 minute drive from my house, we had long talks on the way and coming home. Talks about things that most people don’t understand, but that we could say to each other because there would be no judgment, no criticism. Just complete and total understanding. We can share the fears that only another special needs mom can understand and feel better knowing we aren’t alone in those fears. Sharing relieves some of the fear.

I even got over 9 hours of sleep! Like straight through, nothing waking me up, sleep! And a long walk on a cold morning before I went to pick up the kids. It is amazing how an evening like that can totally change your attitude. Emily and Lauren said they are hoping to do something like this again – and I’m so hoping they do and that more moms will come. I don’t know if they can really, truly understand how amazing the evening was! They even gave us gift bags with more items to pamper ourselves at home. I wish “thank you” could tell them just how much I enjoyed the evening, but it doesn’t seem like enough. Bless everyone who helped make us moms feel special and pampered! You are all amazing!

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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 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! 🙂