Tag: autism families

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Autism, The Birthday Girl and Slightly Different Traditions

Autism, The Birthday Girl and Slightly Different Traditions

I’m actually having a hard time believing my sweet little girl is 32 today! No, it doesn’t make me feel old – just seems so odd to think about. She has such specific traditions that she wants for every birthday that I’ve been worried all week about her special day.

We always have special doughnuts for breakfast on birthdays, but I had no idea earlier in the week if I would be able to get to the store to get them so I asked her if it would be okay if we had them for breakfast on Wednesday – and she laughed and said yes! That is huge!! If you could have met the little girl she used to be, you would know just how big this is. You simply do not change routines – ever. And now, look at her! She’s okay with such a huge change to a day she looks forward to all year! (I did buy a little bag of powdered sugar doughnuts, just in case! 🙂 )

The birthday girl (or boy! 🙂 ) always gets to choose where we have supper from on their day. Another cause for stress for me all week – would the drive-thrus still be open today? (In Ohio, everything is closed for inside dining) Luckily, they are and she will get the Burger King she has talked about for a month. I have no idea why she is so excited about BK – we can practically see it from our house. It’s not like it’s some place we never go to! 🙂 But – Mandy will be picking it up for her soon and she’s over the moon excited about her grilled chicken sandwich! 🙂

Usually, my parents come over for dessert and to watch her open presents. They aren’t coming tonight and she seems to be okay with that. She has asked, but when I told her they have to stay home, she just giggled. (It could also be easier, because she knows their present for her is here! 🙂 ) We are going to video call them so they can still be part of the evening. We all need to do our part to stay away from each other and while I don’t think Casey or Rob understands why, they seem to be okay with it for now.

Last year, Casey chose a pie instead of cake for her birthday – we were all shocked! Cake and ice cream are just her things – every time she hears about a birthday, she wants to have cake for that person – or make sure that they are getting one. This year is the same – she chose pie. We do have to put candles on her pie and she sings Happy Birthday to herself as we sing. I’d like to know what she wishes for, but I don’t ask. If you say a wish out loud, it won’t come true! 🙂

I was looking through a box of pictures this morning and it just hit me again how far she has come. How different she is than even a few years ago. While she does still have certain issues, even those can often be worked through before they become huge problems. On her first birthday, I remember people saying how she liked being in her own little world – several times, as she would rarely look at people when they wanted to take her picture. Or really seem to care whether we were there or not. Some days, I wonder why I didn’t realize she had autism then. Except that no one knew anything about it 31 years ago.

Just now, she asked about going to Grandpa’s house tomorrow for his birthday. I had to tell her no, that we could go another day and she laughed and said another day! I am just so proud of her! She may not understand completely why everything has changed in the last week, but that she has taken it in stride this far is beyond my wildest hopes.

I want you all to remember how far she has come when you have bad days – those days when you are beyond exhausted and just don’t know what to do anymore. You have no idea how far your child will go – don’t stop dreaming and hoping and working. I can’t promise your child will accomplish everything, but I know if you never give up hope and have faith, one day, you will look back and see how far they have come, too. It may not look like our journey, but it will be amazing to you. 🙂

Be safe, everyone! 🙂

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The Adult with Autism

The Adult with Autism

I’ve seen many posts about the need for finding services for people with autism when they turn 18 and legally become adults. According to the law, they can then make their own decisions about everything. As parents of people with autism, we know better.

I often wonder if Casey and Rob are curious about why Mandy gets to drive and have her own house and they haven’t been able to do that. Or do they just assume that’s something other people do – and not something, that legally, they are allowed to do? Do they wonder why their friend Brandon is able to drive and they aren’t? Maybe they think Brandon’s mom is just cooler than me. Or do they know they aren’t able to do it safely?

But, really – how many of us stop and think about whether something we do is safe? And with them having no sense of danger, would that even be a thought to them? Do they want to drive? I’ll be honest – I’ve never asked. Maybe I’m afraid of the answer. Or maybe I’m afraid one of them will just decide to do it one day, since I asked if they wanted to. It’s just another thing I will probably never know.

I am their legal guardian. Neither of them are able to make financial (Rob still believes three quarters is the only money you need – and he rarely spends them. Casey says all money is “dollars” with little awareness of the difference in a $1 bill and a $20. She knows the numbers, but it doesn’t mean anything to her) or medical decisions. Rob is finally able to tell me when he needs to see Dr. Myers, but he wouldn’t understand if a serious medical issue happened. Casey hasn’t told me she needed to see the doctor, yet, but I’m sure she will sometime.

As for living somewhere other than with me, I did ask Casey once several years ago. I didn’t want her to move out, but I was curious about what she wanted. She told me she wanted to live somewhere else. I was shocked and ready to cry that she wanted to leave me – until she told me she was going to move to Grandma and Grandpa’s house with her Elmo and her cd player. Rob will never want to live anywhere else. His room is his safe place.

I do feel guilty sometimes, though. I try to let them make as many decisions as possible. What they want to eat – what they want to wear – where they want to go. But some decisions that most adults make, I still do for them. I tell them when it’s bath time. I take their iPads and tell them when it’s time to go to bed. I tell them when they have had enough to eat.

And the guilt comes. They are adults, after all. In my head, I know they need me to make those choices for them, but in my heart, I worry that I’m taking away the little bit of freedom they have. Eventually, I know they would both take baths and showers, as that is routine (I doubt either consider the reason to take baths beyond routine – hygiene wouldn’t be considered! 🙂 ). And I know she would eat until she got sick and that’s not healthy for her. He won’t eat as much as she does, but he will eat more than he should. I need to monitor their food to help them stay healthy.

I know – some adults don’t care about health and maybe they don’t. But, since they don’t understand how their future could be affected by what they do now, I have to do it. And honestly, some days I really don’t like it. I feel like the meanest mom in the world when I say no more cookies or juice. I feel guilty when I tell them to go to bed – yes, they need it, but I also need some time alone. Am I doing it for them or me? (Some nights, I’ll admit – it’s for me, not them! 🙂 )

I wonder what they think about always being with me or family. Or needing to stay with staff when they go places with their day hab. Do they want more freedom? Do they ever think about Mandy going places alone? Do they feel suffocated by always being with someone? Do they even understand the freedoms that other adults have? In some ways, I am a lucky parent.

Some of my friends with adult children with autism are struggling even more. Their children are more aware of their differences and they want to do the things their siblings and friends are doing. They want jobs, friends – to go places without mom and dad. It’s a whole new level of guilt for the parents. And I do thank God I don’t have to try and explain to Casey and Rob why they can’t do things like their friends. I am lucky.

We have the services they need and I didn’t have to fight with Social Security for years to get their benefits started. I feel for the parents who are fighting for services and feeling the guilt that I feel at times. I pray for the parents who have children who struggle more than mine do. Life isn’t easy at times, no matter where on the spectrum your child falls.

Adding to all of this is the realization that you are aging as your child does. What will happen when you are no longer able to care for them? I’ve decided that I’m going to live until I’m 125 so I never have to worry about them thinking I just got tired of them and left. That thought tears me up inside. I know they will have Mandy and Cory to look after them, but it’s still such a worry. I can’t stand the thought of them being alone or thinking I left. (is it sad that I worry less about the financial part?)

It’s funny. As I sit here writing with tears in my eyes from worry, Casey is laying on the couch giggling and whispering “Adam. Adam.” because today is Adam’s birthday party and she cannot wait to go! It’s so exciting – a birthday party at Pizza Hut! Her biggest concern today is whether there will be cake there. And I know I need to take a lesson from her. I need to stop overthinking things and just enjoy the magic that will always be in our home because they have autism.

We will have tough days, but … the magic! The excitement of going hiking with Tracie! The joy of Santa Claus! The happiness that Elmo can bring. The thrill of buying a huge box of crayons! Dollar store shopping trips and fries from McDonald’s. No worries about bills or perfect clothes. No drama. Just the simple magic that life brings them. Maybe learning from them should have been my New Year’s resolution.

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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 Bits and Pieces

Autism Bits and Pieces

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

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

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

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Autism and Very Real, Very Painful Sensory Issues

Autism and Very Real, Very Painful Sensory Issues

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

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

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

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

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

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

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

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

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

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

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

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

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Autism and a Day of Fun

Autism and a Day of Fun

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

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

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

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

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

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

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

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

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

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

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Autism and the Dumbest Things I’ve Ever Heard

Autism and the Dumbest Things I've Ever Heard

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Autism and a Very Happy Young Man

Autism and a Very Happy Young Man

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

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

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

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

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

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

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

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

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

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

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

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

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

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Autism and a Little Bit of Jealousy

Autism and a Little Bit of Jealousy

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

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

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

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

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

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

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

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

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

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

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

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

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

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Autism and Five More Minutes

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

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

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

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

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

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

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

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

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

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