Category: parenting and autism

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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 Bits and Pieces

Autism Bits and Pieces

The last few weeks have been crazy here. I did a presentation on autism at a conference, our county fair, the kids had their annual physical with their neurologist (the doctor is 2 hours from our house, so it’s a full day trip!)… and all the other usual stuff. Every time I think I know what I want to write about, it won’t come out like I want it to. So, it’s a beautiful fall evening. I’m going to share some highlights and take everyone for a long walk. 🙂

  1. The doctor was so impressed with both of them. Casey answered his questions (very quietly – I had to tell her to talk louder. 🙂 ) and Rob waited patiently for his turn. We are going to try lowering one of Casey’s meds again. She did really well with this last year so fingers crossed it works again! They even held it together when their favorite place to eat was closed and we had to go to Plan B – which we didn’t have until that minute. 🙂 We did get everything to make Casey’s Cookie Monster costume (which Mommy hasn’t started, yet – but, hey! I’ve got 2 weeks, right?? 🙂 )
  2. When we were coming home from Mom and Dad’s house Wednesday, the power window that Rob always uses stopped working. I heard metal pieces fall down in the door. He was panicked, but I kept telling him he didn’t break it. “Grandpa Mack! Cory! Uncle Jeff! Grandpa Mack! Cory! Uncle Jeff!” He kept asking for them (I think he was worried I would try to fix it myself! 🙂 ). My dad got it fixed Friday. After I dropped them off at camp, I discovered that Rob had used his iPad to google “Mazda Tribute power window fix.” I’m constantly surprised by what they know and just can’t tell me. Or they see no reason to tell me. 🙂
  3. Casey was able to ignore the calendar in her head and keep wearing short sleeve shorts into October. It was in the 90’s for a week and even last week, it was warm. She was so excited to wear her long sleeve shirt and a Halloween sweatshirt to the corn maze with camp yesterday! All is right with her world cause it’s cool enough to get back to her clothing calendar.
  4. Yes! This was a camp weekend! Casey talked about it for a month, but as usual, Rob didn’t say anything until Friday afternoon. He had to wear his cowboy hat and pack his power rangers bag with cardboard. We had his clothes packed, until he noticed Casey was packing extra clothes – he added more to his suitcase, too. All red t-shirts. 🙂 He “sang” all the way to camp (about 20-25 minutes from home) – he wasn’t upset – just happy to be going. But, by the time we got there, I had had enough noise. Love that young man to pieces, but I just wanted some quiet. 🙂
  5. And so did one of my friends. After we dropped the kids off, we stood in the parking lot and listened to…. nothing…. absolutely nothing…. and it was wonderful. I’ve said it before – anyone can say they understand being an autism parent (and they may have a good idea of what it’s like!) but unless you live it, every… single… hour… of every… single… day…. they don’t. They can empathize with you. They can listen to you. They can love you and your child. But – only another parent truly “gets it.” And I love that I could share that peace and quiet of a beautiful fall evening with my close friend.
  6. I’m still trying to get Rob to tell me what he wants to dress up like for Halloween. He won’t answer, but I know my boy. When he sees Casey dressed up, he’ll want a costume, too, and I’ll be scrambling that morning to find something for him. He never has been that excited to wear costumes, but he wants to do most of the things Casey does, so I’m guessing he’ll want one. I hate suggesting things to him, because he will just repeat what I say and not tell me what he wants to be. But, I’m not that creative, so he better tell me soon so I have time to make it. 🙂
  7. I’ve been thinking about writing a book again. I never seem to have time to get it organized, but I’ve got an outline ready and thoughts running through my head. I don’t want it to be another “this is our life” book. I want people to see the laughs and the joy autism can bring. Now I just have to find the time and get motivated and get it done! 🙂

I hope each of you have bits and pieces to be happy and excited about this week, too! If you would like to have this blog sent to your email, please sign up on the home page of the blog. I never use your information for anything but sending this right to your inbox. 🙂 Thanks! Have a wonderful week! 🙂

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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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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 the Need for Discipline

Autism and the Need for Discipline

It’s hard to imagine but I have talked to many families who have a child with autism who have told me they won’t discipline their child. They feel the child will not understand and will make the behaviors worse. I’ve also been told that having autism makes the child’s life hard enough, so why make them follow rules? Hmmm – what the heck are they thinking??

We all have to follow rules! I personally find speed limits rather confining and wish I didn’t have to follow them. I’m sure each of you has a rule or two that you would rather not follow. But – that is life! Everyone has rules to follow and allowing your child with autism to get away with anything they want is only setting them up for failure. They need to know boundaries and you need to enforce them.

Yes, it is much harder to discipline a child with autism, but you can do it! As a parent, that’s one of your jobs. If you wouldn’t let your “typical” child do something, then the ones with special needs don’t get to do it either. It’s really that simple. The question is – how to discipline?

First, you need to understand that every behavior is communication. Every single one. We all do it! We smile. We say thank you and please. We avoid people or things we don’t like. We look for what we enjoy. Just like our kids do. For every behavior, look for the trigger. Yes, this is hard and may take weeks. Keep a journal of what happened right before the behavior.

What did your child eat? Are they sleepy? Are they wearing new clothes? Did your routine change unexpectedly? Is there someone new around your child? What time of day did it happen? It is tedious work, but keeping a journal is the easiest way I know to discover a pattern of the behavior and might give you a clue about what is happening. Write down every detail you can think of. You might be surprised at what you find out.

Casey had a terrible time in Kindergarten between 9:30 and 10 every morning. She refused to eat breakfast and never said she was hungry, but as soon as I started sending a small snack for her to have about that time, her behaviors diminished. Had I not insisted on knowing what time she got upset every day, I never would have discovered the simple truth that she was hungry. You will need the help of everyone who is around your child. Don’t be afraid to insist on details!

Second, you need to learn what behaviors are caused by the autism and which ones are simply the child being a turkey. (And for any one who thinks a person with autism can’t be a turkey, come spend time at our house – you will soon change your mind.) Casey is especially good at doing things she knows she isn’t supposed to and smiling a sweet, angelic smile when she gets caught. Nope – doesn’t work on this mama. I tell her she’s cute, but she’s still in trouble. 🙂

You need to discover whether your child is having a meltdown or a tantrum. A tantrum is where they are screaming to get what they want and they will calm down as soon as you give it to them. A meltdown is often a sensory issue and they simply cannot calm down. Many times, they may not even realize you are with them. You cannot talk them down and you can’t touch them. You can only wait for it to be over.

When Casey is in meltdown mode, she has no clue I am with her. She is out of control screaming, hitting her head, flopping around and she isn’t saying any words – just screams. It took me years to realize the best thing I could do for her at those times was to be sure she was safe and stay out of her way. And to be ready with a head rub and a kiss (and a hug, if she wanted, but those were few and far between). When she was younger, I did make her go to her room when she was upset, as she was able to destroy things without realizing it. The back door window, the garage window, the bedroom window, the door, the banister for the basement steps…. and she never left a bruise or a cut on her. It was safer for everyone if she was in her room. I stayed in there with her and let her scream.

The end of those meltdowns is one of the things I’m most grateful for. Once in a while, she lets out a scream to wake the dead, but I can usually (fingers crossed!) talk her down before she loses control completely. It is not a pretty picture.

Now, I can see that her meltdowns were almost always (She could be a turkey! 🙂 ) related to her autism. Changes in her routine were terrifying to her and she screamed about it. Certain sounds were extremely painful to her, but while I knew they bothered her, I didn’t realize how badly. Any kind of change was likely to bring on the screams. (remember the story of the band aid on her toe? or the gloves in the summer?) She just didn’t have the words to tell me – she screamed her pain instead.

She used to chew the feet on Mandy’s Barbies and make Mandy so mad because the shoes wouldn’t fit anymore. I made pictures for her over and over that chewing feet was NOT okay, but she needed the deep pressure. It was so hard to help Mandy understand that Casey (and Rob, at times) weren’t being brats – they needed the pressure that chewing brought. I hated that I couldn’t make any of them understand.

As for how I disciplined them, it was different for each of them. For Rob and Mandy, just knowing I was mad was enough to curb the behavior (though Mandy does like to tell the story of me smacking a wooden spoon on the counter to get their attention, how it broke and they all scattered to their rooms! 🙂 ). I had to be more creative with Casey. Sometimes, it was threatening to take away a trip she wanted to go on. Sometimes, it was to send her to her room. Sometimes, it was to sit on the couch with me.

How you choose to discipline your child is up to you. Only you know what will work for your family. And yes, it will get ugly, but you are not doing your child any favors by not teaching them proper behavior. It may take years, but that’s okay – your child will learn! You may choose to take away a favored item or use a time out chair. Remember – discipline is only to be used for bratty behavior! It is never to be used for behaviors caused by their autism. For those, you will have to help them work through those issues. Again, it is hard and it is exhausting and you will feel like crying and quitting, but you can’t!

Honestly, it may be someone besides you that realizes what is causing a meltdown. Sometimes, we are just too close to the situation to see all of the possibilities. Don’t be afraid to ask someone to tell you what they notice! It does take a village to raise a child! I’ve had other people tell me what’s wrong often and I’m not upset that they noticed it before me – I’m just grateful that I know what is causing the problem so I can work on fixing it!

I know discipline is just another “thing” you have to deal with, but it’s so important. Your child needs to know their boundaries (streets and water come to mind!) so they are safe. Of course, most of our children have no sense of danger, but they can be taught (and always, always watched, as the temptation of water is always a strong one, it seems!).

How do you discipline your child? What techniques work for you?

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Autism and a Happy 4th of July!

Autism and Happy 4th of July

I know it’s a little late to be wishing you a happy 4th, but it is still the holiday weekend and last week, I was too excited to share all about our trip to think about the 4th. Casey, of course, reminded me often in the days leading up to the holiday. You know how she loves her holidays! It’s not her autism – it’s just her. I love holidays, too – she got it honest. (Though, I don’t tend to be quite as obsessive as she is over details and plans! 🙂 )

She asked about going back to Sesame Place several times (She will continue to ask. Rob has not said a word about going back to the ocean, even though I know he absolutely loved it!) and wants to written on her calendar. When I wouldn’t do that, she wanted our July 4th plans written down. She insisted on a cookout and fireworks.

That’s easy enough. She doesn’t care about having a big, elaborate cookout. Hamburgers on the grill and baked beans are enough to satisfy her. She also wants sparklers, poppers and to go see fireworks. Again, Rob could care less. He just sits and lets her make all the plans for us. 🙂

This year, our town made plans to do the fireworks on the 3rd, in case of bad weather. ( I don’t know about you, but this has been quite a summer for crazy rain/storms where we live!) Casey was not thrilled with the idea of the fireworks not being on the “right” day, but she didn’t get upset. She just kept reminding me so I wouldn’t forget she wanted to see them.

And here again is a difference between them. She will constantly remind me to take her to see the fireworks, but he never asks. But – when we get there, he is the one who truly enjoys watching them. (We can see most of the fireworks not far from our house, so we don’t go into the crowds – it’s easier for both of them to not be close to the loud noise!) She sees one and is done. She can check it off her list of requirements for the 4th and is ready to go home to bed. He wants to stand and watch them.

On the 4th, Mandy and Cory, Grandma and Grandpa were going to come and have supper with us. I had already bought the required sparklers and poppers. I even found a cute headband for Casey to wear and she had a new shirt that she called her 4th of July shirt. (Tho, she didn’t wear it that day – no idea! ) She watched me bake brownies and cookies and made sure I made her favorite pasta salad. She reminded me all day that we were having a cookout. Rob never said a word.

When it was time for everyone to come, Rob came outside with me. She wandered out in her slippers (you can’t wear flip flops at home – you have to wear your winter before bath slippers, with patriotic socks, of course! 🙂 ) and sat in the swing. After we ate, Rob went back to the AC, while she waited patiently for sparklers. She doesn’t want to wait for dark, but that means her bath schedule will be changed.

Rob jumped at the thought of sparklers and ran back outside. Again, he never mentions them like she does, but he enjoys them more than her. I light the sparklers from a candle and hand to each of them. Casey squeals ouch whenever a spark gets to close to her. Rob holds the sparkler carefully and grins. He never puts it down until the very last spark is out (I put a bucket of water on the patio for them to drop the used ones in) and is immediately ready for the next one.

Casey seems to be afraid of them, but she has to use them all. It isn’t possible to just say she is done and walk away. It is a tradition – you never stop while there are sparklers available. She popped a few poppers, too, even though she really doesn’t like them. But, again, it’s on her “list” of what to do for the 4th and she can’t relax and be happy until all of her items are checked off.

Finally, the cookout was finished. She had sparklers and poppers. She saw fireworks the night before. Now, now – she can relax and smile. She can happily sit in the swing and giggle. Until everything is done, she simply can’t enjoy it. She is too worried about not doing something. That’s the autism.

On July 5th, she got up and said she wanted a blue flag shirt for July 4th, 2020. She also expects a cookout, sparklers, poppers and fireworks – on the 4th, not the 3rd. 🙂 I asked if we could wait to plan next year a little closer to the date. “No.” She even told me what she wanted for the cookout. (She wants them same stuff for every cookout! 🙂 )

I hope each of you had a wonderful holiday and it was perfect for your family! Whether that means a big party or just your immediate family. A crowd and fireworks or sparklers in your own backyard. The 4th of July can be an especially difficult holiday for people with autism. Not only is their routine changed, but the noise of fireworks can cause sensory meltdown. So can large crowds. Lots of the “traditions” for this holiday can be completely opposite of what our families need.

Remember, despite what some people may say, doing what your child needs to be happy and safe is not “giving in” to them. Do what’s best for you and ignore others. They have no clue what your child’s needs are and if they aren’t willing to try to learn, they simply aren’t worth your anxiety.

Happy 4th weekend!