Posts

Posted on

Autism and Colorful Traditions

Autism and Colorful Traditions

The house is decorated. A cookie baking day is planned. Most of the shopping is done and I’m in the process of making my Christmas cards. It’s time to sit back, relax and enjoy the pretty tree lights. And, time to think about how autism makes our Christmas different – and to celebrate those differences!

I saw pictures this morning of my cousin, Judy’s, house. It’s absolutely beautiful. Everything is coordinated and perfectly laid out. It’s the Christmas home of my dreams. I saw pictures that another friend had posted on Facebook of two beautiful trees. (By the way, I want to see both houses in person! So beautiful!)

I’m not saying our trees aren’t beautiful, because they are – to us. I decided this year to do both trees in the dining room bright colored and keep all the decorations in there the same. It mostly worked out that way – until Casey insisted that I change the table runner because she wanted our usual place mats. It’s not a big deal, but… It’s not what I wanted. 🙂

Casey and Rob like the house to be decorated the same every year. Some things can change, but others can’t. The picture with this post shows one thing that Rob insists on. Many, many years ago, he got this Teenage Mutant Ninja Turtle in a McDonald’s happy meal and decided that Baby Jesus needed a very special guard. Every year since then, there’s the turtle. This year, when I put the nativity out, I tucked the turtle in the stable (cause – hey – he’s still guarding the baby, right??). Yeah…. nope. As soon as Rob saw the nativity without the turtle, he started rocking and knocked poor Joseph over in his hurry to rescue the turtle and place him properly. And he checks every time he walks by to be sure I didn’t hide him again.

Casey has already started checking things off in her mind that have to be done as part of Christmas. She attended a performance of The Nutcracker yesterday with my mom and dad. My niece, Anna, was the Snow Queen (and other parts) and Casey said she was pretty and she danced fast. 🙂 And that she went to Steak and Shake for supper. We went to the Christmas parade and waved to Santa.

Casey will start reminding me she needs to go shopping and that we need to go somewhere to look at lights and we need to go to a dance and wrap presents and… The list goes on. Rob enjoys those things, too, but he takes it as it comes. He’s not pushy. 🙂

The tree in Casey’s room is all blue and purple ornaments, plus a few that she made or received (I have no idea what the criteria is for an ornament to be allowed on that tree – I tried to give her more and she strongly said NO!) Rob’s tree still has the unbreakable satin ornaments that he has used since he was a little boy. I found the cutest ornaments for him, but he refused them. Even his Wizard of Oz ornaments can’t be on that tree. (frankly, that little tree has seen better days, but when I brought a new tree in for him to use, he ran to the basement to get “his” tree.) It’s a sad little tree, but he is so happy with it! And that’s truly all that matters.

Our Christmas CDs are in the car (Toby Keith and Alabama are their preferred ones) and Casey will remind me when we leave later that it’s December and time for that music. (She has also reminded me 8 – 10 times that today is Tracie’s birthday! 🙂 ) She has Christmas sweatshirts ready to wear all month (but not on Christmas Day… she often has socks for a different holiday on that day, too! :0 ).

The presents they want from Santa are different than most people would imagine, but that’s okay. Santa knows what they really want. Please be careful when you talk about Santa around people with special needs. Casey is an adult, but she still believes in him. I am always very careful and if someone says something, I always make up a story so that belief isn’t ruined. Rob will talk about Santa, but he always has this look when he does. I’m not sure he believes, but he won’t ruin it for Casey. (We saw the Easter Bunny in the mall last spring. She ran up to him and swayed back and forth as she smiled. Rob looked at me and said “man” and grinned.)

Rob will find index cards and playing cards under the tree and a huge box of crayons. Casey will be the proud keeper of yet another Grover, Big Bird, Ernie and Bert. There won’t be any fancy gadgets or expensive clothes. There won’t be gift cards or jewelry. There will be coloring books, Legos, signs, Sesame Street DVDs and other toys. There won’t be many smiles, as both of them are very serious Christmas morning. The happy giggles come later and that’s okay, too. I know they are happy, even if they can’t tell me. Christmas magic is truly the best!

We may do Christmas differently, but that doesn’t change the love and magic of the season! We don’t go to a lot of parties. We don’t run ourselves ragged trying to do it all. We don’t spend more than we have to impress others. We spend lots of evenings in a dark living room with just the tree lights on and watching Christmas cartoons or movies. (Home Alone is their favorite!) We don’t overeat and we try to keep the same schedule as always. We all function better when our schedule stays close to usual. And we are happier with plenty of sleep! 🙂

Please, try to keep your routine as normal as possible. Your child (and you, I’m betting!) needs this. When you do attend an event, plan for what your child needs and don’t worry about what anyone else thinks. Start your own Christmas traditions and let go of what you imagine Christmas is supposed to look like. Decorate with Ninja Turtles and mixed up colors. Wear Halloween socks and Easter shirts (yep – that happened one year!). Include your child in whatever they are interested in but don’t take it personally if they don’t care about baking perfect cookies or wrapping the presents in matching paper.

Your child will enjoy Christmas on his or her own terms. You can’t make them enjoy the same things you do (do you enjoy everything everyone else does??). Let your child join in where they are comfortable and follow their lead for your traditions. You will all have a more relaxed and memorable Christmas!

Posted on

Autism and a Less Stressful, Fun Holiday Season

Autism and a Less Stressful, Fun Holiday Season

As I write this, Rob is repeating his “song” over and over. He has been at it for more than three hours so far with no end in sight. He didn’t feel well yesterday (he said his belly hurt, but also his throat 🙁 ) and I don’t know if he still doesn’t feel like himself or if he is just talking. I am fighting a cold and yesterday, Casey had a meltdown because she couldn’t find the shirt she wanted to wear. (She has decided that she will only wear a certain shirt on the weekends.) I’m feeling a little stressed without even thinking about the quickly approaching holidays.

I know you all feel it. The every day stress that comes from real life – without holidays! Illness, bills, jobs and the roller coaster of autism can cause anyone to want to scream, cry or just take a nap. (I’m feeling all three right now! 🙂 )

Here are my tips for a less stressful holiday. (You can do it! Honestly – I don’t stress about holidays – I love every minute. But – I have a very loving, close family and group of friends that love my kids just the way they are. It’s easier for me. 🙂 )

  1. Let go of the vision of a perfect holiday. A perfect holiday isn’t everyone sitting down at a table decorated with coordinating dinnerware and a perfectly cooked meal. It’s loud and loving and lots of laughing. Your perfect holiday won’t look like mine – and that’s great! My Thanksgiving will be a long walk in the morning, a long shower, a nap, reading and then supper with all of my kids, my brother and his family and my parents. (With a HUGE helping of my mom’s stuffing! 🙂 ) It will be Rob sitting at the island in their kitchen in “his” spot. Casey will sit in the dining room with the rest of us, but she won’t stay long. And that’s okay. They come and go as they need. Please, let your children do the same. Don’t let anyone tell you that they have to sit and visit with the group.
  2. Take food for your kids. If your child only eats certain foods, take it with you. Anyone who gets upset because you are doing this isn’t worth your time to explain sensory issues. Ignore them and enjoy your own meal. If it will be that big of a deal, host the party at your house where your child is happiest.
  3. Bring their comfort things. If your child needs headphones to block noise, bring them. If they need a comfort item, such as a blanket, bring it. You will have more fun if your child is relaxed. Again, ignore any comments.
  4. Make your own traditions. The traditions that we have won’t be like yours, but they make us happy. Do whatever makes your child/family happy. If you want to eat hamburgers and fries for a holiday dinner, do it. Make your own version of an Advent calendar. (We made paper chains and the kids got to rip off a link every day – it was a very visual reminder to when Santa was coming!) If skipping the huge meal on Thanksgiving would make your family happier, then skip it. Order a pizza and watch TV.
  5. Don’t stress about shopping! Don’t listen to the people who say your child is too “old” for toys or someone who says playing cards aren’t a real gift. Yes – they are, if that’s what the person loves. Casey and Rob are both getting toys and some odd gifts. I don’t care – they will be happy and excited on Christmas morning and I don’t have to stress over it.
  6. Rest!!! Yes – I said it. Stop trying to make your house picture perfect. Stop trying to wrap your gifts as if they were art projects. Stop making a million desserts that you don’t need. When your child sits down – you sit down, too. Sleep when your child does (and rest when they aren’t sleeping!) You can handle stress easier when you aren’t exhausted, too.
  7. Exercise! If you can’t get outside, make laps in your home. Anything to get you up and moving will help with stress. Dance around the kitchen while you cook. Whatever it takes to get moving. You will feel better.
  8. Avoid people who won’t accept your child. Yes – I said it and I mean it. If someone makes comments to you or your child or are just negative, stay away from them. You don’t owe anyone a visit or a meal. I don’t care if it is the holiday season – toxic people are not worth adding stress and pain to your life. Protect your child and yourself and stay away. It’s simply not worth it. Your most important job is to protect your child.

I’m sure some of you are thinking I make it sound too easy. I don’t mean that – it won’t be easy to avoid people or to deal with negative comments. You just have to think of your child and yourself first. Remember – those who judge don’t matter and those that matter don’t judge. (Thanks, Dr. Seuss! 🙂 )

I took the kids to the Christmas parade Friday night to officially start our holiday season. I was a little concerned about Rob as parades aren’t usually his thing, but he laughed and giggled through the whole thing. Casey was so excited to see Elmo, Cookie Monster and Santa – and he waved to her! She was bouncing in her seat! Happy holiday season to all! Eat, drink, rest and enjoy!

Posted on

Autism and the Non-Compliant Child

Autism and the Non-Compliant Child

I was asked a few days ago what I would do if teachers or staff tried to force Casey and Rob to always be compliant. Okay, first of all – who is going to force me to always do what others think I should? 🙂 But, seriously, it is an issue that is running rampant in schools and care facilities. What to do about the person who won’t do what staff wants them to do? And then, what to do with the staff that try to force compliance on a person? (apparently, my first thought of smacking them in the head is NOT a good option! 🙂 ).

I do understand the need for a certain amount of compliance, especially for safety reasons. Children need to learn the dangers of running off from their group (and this is a tough thing to teach children and adults with no sense of danger!) or how to play on playground equipment correctly (again, a tough thing to teach sensory seekers!). But, I do not believe that any program should be a “one size fits all” program. Every child, special needs or typical, is different and those differences need to be considered when working with the child.

When Casey was in preschool, she refused to keep her hand on the rail as the group walked down the hall. I think she simply saw no need for it, so she didn’t do it. As long as she stayed with the group, her teachers and the aide didn’t care. Other teachers, though, force children to keep that hand on the rail. Why? As long as the child is walking with the group – who cares? Will it matter tomorrow?

And besides, you have no idea why that child/person may be avoiding something. How do you know that the rail isn’t painful to them? That it may hurt their arm to walk like that? Unless that child is verbal and can tell you, you don’t know. Forcing that child to walk like everyone else is just a power trip for that teacher. Again, I mean when the child is willingly walking and staying with the group – who cares where their hand is?

Maybe the child is avoiding doing an art project because the scissors hurt their hand? Or maybe they are embarrassed because they can’t use the scissors as easily as their classmates? Maybe the glue makes them gag. Maybe they simply do not understand what is being asked of them. And when the child refuses to do the art project, they may be labelled non-compliant and the teacher becomes frustrated.

I get it – you have laid out this wonderful, fun project (to you, anyway) about Valentine’s Day and that child refuses to cut out a heart. What is wrong with the child? Don’t they know that mom will love their project? Don’t they care about mom? Seriously, folks, I’ve heard teachers make these comments. I do understand the teacher’s excitement, but what about the child?

Every time you have a child that refuses to do something, stop and ask yourself “Why?” and really think outside the box. Maybe the person is hungry, tired or sad. Maybe they are thinking about the dance they get to go to later that day or maybe they are thinking about Legos or pizza or coloring books. Maybe they are wondering where the teacher got those cool socks. Teachers and staff tend to take non-compliance personally and usually, it has nothing at all to do with them.

I once taught a little guy who has autism and ODD (oppositional defiant disorder). He would sign that he wanted to go outside, but if you said, “Ok, let’s go” he would refuse every time and I ended up standing in the hall while he sat. He went against everything that was said to him – even if it was something he wanted to do. It was his disorder. I soon learned if he wanted to go outside, not to say a word, but to go get my coat and he would happily follow, because it was his idea. I spent a lot of time sitting in the hallway while he hung upside down as he tried to decide whether he wanted to do what I suggested or not. (I have to say – even with all of that, he is one of those little ones that gets into your heart and never leaves. He always has a smile for me when I see him now and it’s been years since I taught him).

Consider that the person may have sensory issues you are not aware of. Sensory issues ARE real, not just a way to get out of doing things. They are painful and distracting and stressful. If you don’t believe me, think about being put in a small room, music is playing, a candle with a strong odor is burning, the lights are flickering, the heat is turned up, the clock is ticking loudly and you are being forced to wear clothes that are itchy. And – you are told that for lunch, you are being fed something that absolutely turns your stomach. And, someone comes in and says, “Read this story. Answer the questions. And sit still, no wiggling.” Let’s see how long you last. Don’t fool yourself – you will be a grouchy mess.

And that’s what some of our kids live with every – single – day. Teachers and staff need to understand that. They also need to know that people with autism can “read” others. They know who respects and cares for them and who is only there for the money. And they will respond to those that respect them in a completely different way. If the kids know someone doesn’t like them, why in the world would they want to anything for that person? I have learned that if Casey or Rob avoids someone, there is a good reason and I should avoid that person, too.

As I said, some compliance is necessary. I believe Casey and Rob should help clean up messes they make. They need to take their medications. (although, if someone refuses to take theirs, think about their reasons. Maybe they feel worse after taking it? Maybe they don’t trust the person giving it to them? Always, always, think outside the box!) It can be very hard to discover the reasons behind many behaviors, but it has to be done.

Often, a new set of eyes can help. When you are too close to a problem, it can seem insurmountable, but someone new might see something you haven’t noticed. I’m always open to people giving me their ideas. I know sometimes I get stuck and can’t get past my irritation at the behavior or the fact that I’m just too tired. Ask for help before you do something you will regret. If your frustration is too great, walk away from the situation! One wrong action could have devastating affects on the person you are working with.

There are some people who are simply not cut out to work with people with autism. They don’t have the right temperment or passion. They may think it will be easy and when it isn’t, they get angry and do things without thinking. I get that – I’ve done that. But – our kids need to be surrounded by people who love them – not bullies who will force them to do what they are told. Yes, I do think some teachers/staff can be bullies. It becomes “You WILL do what I say, no matter what.” It becomes a battle of wills and trust me when I say this – no one is better at winning a battle of wills than a person with autism. You will not win. And if you do, it’s only because the child became bored and gave up. But, if it is truly something that child doesn’t want to do – they won’t give up.

And then you need to ask yourself “Is this the hill I want to die on?” That question was used in military strategy sessions in regards to whether holding a certain position is truly worth it. Think about it. If winning this battle meant losing your self-respect, is it worth it? Nope. It isn’t. So when things become intense and you are thinking about forcing someone with autism to do what you want, stop and think…

Is this the hill I want to die on?

Will this matter tomorrow?

If either answer is no, then walk away. The person with autism didn’t “win.” You both did.

Posted on

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.”

Posted on

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! 🙂

Posted on

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! 🙂

Posted on

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!

Posted on

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! 🙂

Posted on

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.

Posted on

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!