Category: autism parenting

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Why We Need Other Autism Parents to Talk To

Why We Need Other Autism Parents to Talk To

Last week, I finally had the chance to sit down with another autism mom and talk. We usually try to get the group together, but this was a last minute thing and it was so much fun. We could talk about things that no other person, unless they are an autism parent, understands. Who else would “get” the pain of watching your child wanting a friend so badly and not having one?

Who else understands the “rules” of the house? Or the fear that another meltdown is only seconds away – even when there hasn’t been one in months? Who else worries every time they leave home about sensory issues and a child that will run away as you blink? Or finding a bathroom that your child can use?

I love having these ladies in my life. I may not see them or talk to them often, but I know that one phone call to any of them will make me feel so much better. They understand that sometimes, I just don’t like autism. It isn’t that I don’t like my kids – it’s the autism that drives me crazy at times. No, I wouldn’t change them at all – even typical kids drive parents crazy at times. 🙂

But – I wasn’t always ready for other autism parents. When Casey was first diagnosed, I had my hands full. I didn’t have enough of me to put the effort into friendships that weren’t already established. I did wish I had someone to talk to, but there weren’t other parents around. Things have sure changed in the last 30 years! I also knew that I didn’t have the time to meet other autism parents – and I wasn’t ready to talk about Casey and autism. I needed time to adjust – to figure things out for her.

And then Rob was diagnosed. But, by then, we had all adjusted. We learned (and of course, most of what I learned for Casey didn’t work for Rob! 🙂 ) and I was ready to talk about our journey. I was lucky enough to meet Brandon and his family then. Brandon quickly became one of Rob’s buddies at school and his parents are still close friends of mine.

Adam and his mom came next. And then Riley and his family. And Tyler and his grandparents. And Jalen, Cyrys, Alaina, Ryan…. the list goes on. The point is – it took a long time to build a support circle like I have. First, you have to be ready to talk about private things. Then you have to find other autism parents. It’s not easy. I get messages from people on Facebook that wonder where I am because they don’t have anyone to talk to close to them. I wish it was easier to find the support that is so needed.

By the time I met Brandon and Lillie, I was beginning to understand that the fights that Casey and I went through might help other families avoid some of the same issues. I could talk about it – once I felt like I could trust the person who was asking. I learned quickly who was asking with love and those who were just nosey. I didn’t mind answering questions from people who were curious, but the ones who just wanted to know dirty details were annoying. I might have told a few of them off over the years. Always nicely, of course! 🙂

As Cherie and I talked the other night, she said something about me being some sort of mentor for them as they learned about autism. I had to laugh at the thought that anyone would think that about me. Most days, I still feel like I’m feeling my way in the dark. Not as much as when the kids were little, but autism is always interesting and no one knows when the next “surprise” might decide to pop out. On good days, I’m confident we will handle whatever it throws at us. Other days, I think I’ll just duck and let it fly at someone else! 🙂

When you are ready, look for other autism parents to talk to. It may not be easy to find them, but I urge you to try. If you can’t, ask your child’s teacher about other autism parents or call your county board of developmental disabilities and see if there is a support group in your area. I met so many amazing parents through a support group – even if you don’t say anything, you will feel better just hearing other parents talk about the same issues you may be having.

Autism isn’t easy. Even high functioning people with autism have rough days. You will have rough days, too – days that you just want to scream or sit and cry. It’s great if you have a best friend that is always there to support you, but other autism parents can support you in ways that no one else can. If you can’t find anyone, message me! Even if we can’t talk face to face, I promise to be a listening ear for your good, bad and ugly days! 🙂

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Autism and Quiet Time for Mom

Autism and Quiet Time for Mom

In a few hours, I’ll be heading to camp to pick up Casey and Rob. I dropped them off Friday after supper and they stay until after lunch on Sunday. They were both so excited about going, but to be honest, I tried not to look forward to it until I dropped them off. I kept expecting one of them to be sick again or Rob not to be able to walk.

But, they did go. Ernie got chosen (after several minutes of trying to decide who to take) and Rob packed enough clothes to last several days. He had to run back in the house and get his cowboy hat. 🙂 (he only wears it to camp, now!)

I came home and got to watch Avengers Infinity War again… Quietly. No bath interuptions. No snack interuptions. No long black train… And then I went to bed. Exciting? To you, maybe not. To me…. It was great!

Yesterday, I spent the day doing fun things for me – and even got to take a long walk with Blue! And a long talk with Tracie (uninterrupted!) and the last Avengers movie. (what can I say? I love Hulk, Thor and the others! 🙂 ) and yeah, I had tears at the end – but you know what?? I got to watch the whole movie!! The whole movie! Imagine!! It was great! (I do watch movies, but rarely without interruptions or starting them later at night when all I really want is to go to bed!)

And now I’m going to get ready to go to church with mom and dad and have lunch with them before I go pick up the kids.

Later…. church was wonderful. Lunch was fun and I got to camp early to see them. I had their suitcases in the car before they got up to the building where we have to sign them out. Rob was walking up to it when he saw me and I got a huge grin – and even a hug!! Usually, he doesn’t do that until we are home, but it was amazing to get a tight squeeze when he saw me. Then Casey did the same – a real hug and such a sweet smile. 🙂 They missed me, too!

Rob was a little anxious this time, but who knows why? He was on repeat about fast food places and their menus and couldn’t go to sleep last night. I wish he could tell me what he was thinking, but he just smiles and looks at me. Maybe someday, I’ll know. For now, I can only guess. And guesses won’t help me keep it from bothering him again – whatever it was. I’m so thankful that camp staff weren’t upset at all – I hope they know how much that means to me. It isn’t easy knowing that he was singing late at night and bothering other people. It’s a worry for me every time he goes.

They are both happily in their routines now. Ipads are on – Lego trees are being built. Her foot is swinging to music as she asks about Mandy’s birthday tomorrow. And I’m happy they are home. I enjoyed the break – I’ll admit that, but I still feel more like me when they are home. I do look forward to the next time (and Casey has already told me they are going to the zoo!) and I think they are, too. They love camp and the friends they have there. Casey was a little surprised to tell me that one friend had a baby (Lauren is a volunteer that hasn’t been there for a while, but she brought her baby with her this time. 🙂 ) and that Logan’s daddy is Donald. (Again, I have no idea why she didn’t realize Emily and Donald were married – or if she even cared. But somehow, she realized that Donald is Logan’s daddy and she just giggles and giggles about that. 🙂 )

I know that not everyone is as lucky as we are to have a camp so close to us. I wish more people had services like this – and that more people who do live close took advantage of it. It was hard for me the first time. Not just leaving them with people who were mostly strangers, but just to admit that I wanted and needed a break was terribly hard. I’m always told how strong I am. I feel like I let people down if I admit I need a break from autism. (I know it’s silly to feel this way – but it happens.)

So – take all breaks you are offered. Enjoy every quiet minute you can get. These quiet minutes recharge your spirit which makes it easier to handle everything life with autism throws at you. Push the guilt away and enjoy being just you. Enjoy the quiet without guilt. Enjoy eating a meal without “help.” And enjoy the smiles and hugs when you see them again. 🙂

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You are an Amazing Autism Parent

You are an Amazing Autism Parent

That probably sounds like an odd title to a post, but I wanted you to know it. I have no idea what your life is like, but I know enough to know you are tired, stressed, maybe lonely, certainly worried and an amazing autism parent.

Like most people, last week was our first week back into our usual routine and it seemed like it was a month long. Rob was happy to be back to normal, Casey not so much. I went to wake her up one morning, and she said “no, snow day!” 🙂 As much as I wanted to crawl back in bed, too, I laughed and told her to get up. Not long after she got up, a memory popped up on Facebook reminding me that one year ago, we were all home because of a huge snow storm. How I wish I had her memory! (on a side note, it was almost 70 here yesterday!)

The first week back with a full moon and crazy weather at the end. Imagine my excitement! Casey wouldn’t sleep Monday, Rob was up and down all night Tuesday, she didn’t want to sleep Wednesday and he had a terrible time going to sleep Thursday. Yayyy full moon! Thank God, they both crashed Friday and slept last night, too, cause I was tired. Like crying over little things exhausted. (yep – crying meltdown yesterday morning – sorry, Dad!) So – there – for those who message me and tell me I have an easy life with autism… some days, yes, I do. Others, nope, not so much.

So this brings me to my point. I see you. I know you have days when you are crying in the shower (if you have time for a shower!) so no one knows, especially your child. Because you never want your child to think they are the reason for your tears. Or so no one knows that the “strong” person broke. I see you. I get it. I’ve cried in the shower more times than I hope to ever remember.

I know you are so tired that simple things like what to make for supper are more than you think you can handle. There were weeks when Saturday supper was frozen pizza for Rob and me and ravioli for Casey because I knew they would both eat and I didn’t have to think about it. Healthy? Nope… but, sometimes, you gotta do what you gotta do. They were happy and so was I. 🙂

I know that beyond not getting much sleep, you are tired of fighting for services for your child. You are tired of phone calls from the school. You are tired of therapies, doctors, insurance. You are tired of trying to figure out how to pay bills. You are tired of making the same food, washing the same clothes and watching the same TV shows or movies. You are just tired of it all.

But, here’s what else I know. You are doing an awesome job! You may not think it. You may not believe me. That’s okay. I know you are. I know that your child’s eyes light up when they see you. I know you wonder if your child loves you or even cares if you are around. Yes – they do. I promise you that. Your child may never say a word, but they love you. They need you – the imperfect, exhausted you. Just like you need them.

I know that you put yourself last. That all of your energy goes into taking care of your family and home before you think about yourself. I also know that you can’t do that very long. You have to think about yourself or you won’t be able to take care of them. Trust me – I know it’s hard to think of yourself, of spending time doing something just for you. But, if you don’t, you won’t be able to take care of them. I learned that the hard way – I speak from experience. 🙂

I know that you question every decision you make for your child. I know you are lonely and feel forgotten by friends, at times. I know your family may not be as supportive as you want. I know you may have had to limit the time your child spends with some family and that you hurt over that.

But really – for all of you that needs to hear this. You are an amazing autism parent! Every day, you get up and you do the very best you can for your child. You love that child more than you ever thought it was possible to love anyone. You brag about their little steps forward. You try every thing you hear about that may help your child. You do research better than a detective. You ask questions and reach out to other parents who may be able to help you. You are stronger than you think!

Always remember – from one autism parent to another – you are doing a wonderful job! You may not always believe it, but I have faith in you. Be as proud of yourself as you are of your child. Brag about yourself, too. You got this!

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Autism and Checking off the List

Autism and Checking off the List

Yesterday, I saw Casey’s “serious” holiday look. It happens when she starts thinking about her official list of what needs to be done for Christmas and other special days. She can get irritated if she feels I’m not following her list closely enough – or if I’m not doing things quick enough for her. Thank you, autism! 🙂

Luckily, the look went away quickly. I’m not sure what she was thinking about but she was giggling and happy within a few minutes, so I really didn’t care!

I took them shopping Thursday evening. As soon as we walked in the store, Casey took off for her first gifts. While I’m not going to tell what anything is, now, as some of the people she bought for read this blog (and one is writing it! lol – they always buy what they want to give me when I’m with them! 🙂 ). Anyway, I understood her reasoning for Grandma, but she had to tell me why she picked out Grandpa’s. Mandy’s is sparkly, mine is cute and Cory is a boy, so no sparkles. She picked out a squishy toy for Rob (they never pay any attention to what the other is doing) and when I asked why, she said because he squeezes. Yep – she’s right. 🙂

Rob waited patiently, but as soon as I asked what he wanted to get, he grabbed three of one thing (I knew these things had caught his eye as few weeks ago) – Grandma, Casey and me. Mandy got something different and he carefully picked out certain colors of another item for Cory and Grandpa. He was serious about those colors, too!

They got to wrap their presents yesterday and Casey is beyond happy that there are 3 presents under the tree for her, now. Rob never looked at the pile. He rarely does – it’s not time to open them. Even on Christmas Eve, he waits patiently for his gifts to be handed to him. Casey won’t touch the presents as long as she can read the name tags on each. And she carefully reads them over and over – just to be sure no new ones have been slipped under there while she isn’t looking! 🙂

I think we are coming close to checking off everything on her list. We are going to the Christmas dance Thursday evening – we’ve shopped and wrapped. We are making a craft later today with Mandy and baking cookies and candy next weekend. We’ve seen a drive thru light display. She mentioned going to the zoo and we have plans for that, but the day we planned on going is supposed to be bitterly cold, so that may change.

I wonder what is on holiday lists of other people with autism. I’m sure they each have their own ideas of what an “official” holiday looks like and what they would like as presents. I love the traditions that the kids look forward to each year – I just wish Casey wasn’t so strict with each of them. I wish she could relax and enjoy each a little more. I know she loves and enjoys each of our traditions, but she rarely smiles during any of them. I get the smiles after – when she is sure it happened exactly as she wanted it to.

Casey and Rob never spend much on their presents for others. Their reasoning may seem a little odd at first, but we can usually understand why after a few questions. They pick unique gifts and it’s obvious that they have thought about it. One year, Rob crawled around on the floor of the store until he found a bag of Funyuns for Grandpa. (I didn’t know my dad even liked them!) Casey likes to make gifts (No idea why she finally decided to buy her gifts this year!) but when she does buy them, she has a careful plan.

If you take your child shopping for gifts, you may not understand their reasons for purchasing a certain gift, but know that your child has perfect reasons – and you would probably get a laugh at the way they think and their choices. I know I’ve laughed at Casey and Rob’s reasoning before, but it does make perfect sense.

I hope each of you survived the full moon/Friday the 13th/2 weeks before Christmas storm. We did okay – they had trouble going to sleep a few nights, but nothing major. Thank God! The dread I felt when I saw the full moon and Friday the 13th … oh man – the dread. I know each of you understands exactly what I mean!

Remember to take care of you in the next few crazy weeks! Your child will feed off of your stress and you’ll be both be unhappy. Take time to breathe and read a Christmas book. Even if your child isn’t sitting still, they are listening. Read it for your enjoyment as much as theirs!

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Autism and Being Thankful

Autism and Being Thankful

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

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

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

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

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Autism and the Individual Service Plan

Autism and the Individual Service Plan

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Have a wonderful week! 🙂

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Autism and the Difficult Topics of Conversation

Autism and the Difficult Topics of Conversation

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

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

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

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

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

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

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

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

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

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

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

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

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Autism and a Special Night of Fun

Autism and a Special Night of Fun

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

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

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

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

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

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

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

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

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

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Autism and Very Real, Very Painful Sensory Issues

Autism and Very Real, Very Painful Sensory Issues

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

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

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

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

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

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

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

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

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

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

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

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

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Autism and a Day of Fun

Autism and a Day of Fun

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

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

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

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

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

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

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

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

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

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