Month: March 2019

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Autism Awareness Month – Do What’s Best for Your Family

Autism Awareness Month

I’m sure most of you know that April is Autism Awareness Month and that April 2nd is World Autism Day. Most posts ask you to wear blue to show your support and puzzle piece items are abundant this time of year. I’ve been doing a lot of thinking about April the last few days, thanks to a follower on our Facebook page. He had several really good points. I’ve also read other posts from families who dislike the puzzle piece and wearing blue. Other families “Color their world.” Still others do nothing. My point is – do what is best for your family.

I understand people don’t like the puzzle piece as they feel it is saying their child is “missing” something. A well-known autism organization likes to say “Till all the pieces fit” as if lives were a puzzle that may not be completed, until autism is cured. I’ve written before I am not a parent who wants to see my children “cured.” There is nothing wrong with them – autism is part of them, like my temper is part of me. To say they need cured is like saying they have a terrible disease and not just a different way of thinking and feeling.

I like reading what other people think as it gives me a different perspective. I also know that many unscrupulous people use “Awareness Months” to scam people from money. Please, please – if you feel the need to donate, give directly to the organization – do not donate over the phone when someone calls you. Or give your donation to a local organization that helps families with autism.

I never felt the puzzle piece was a negative symbol for autism. (Please – this is only my opinion and I’m not trying to convince anyone to think like me!) I like the bright colors. I wear puzzle piece charms. I also wear puppy paws. My charms are only for things I love – not a political statement. But I have another reason to wear the puzzle piece….

Casey likes it. Simple as that. She doesn’t think there is anything wrong with her – she just likes the puzzle pieces. She doesn’t understand why people argue about it. She likes that “she” has a ribbon and that she can give them to her friends in April. To her, April is a celebration and you know how she loves celebrations! She won’t tell you she has autism. She won’t tell you much about herself. Casey and Rob both know they are different than others – they just don’t care.

They are happy. They have a huge family that loves them. They have Mandy and Cory. They have Elmo and magazines. They have crayons and color by numbers. They get to go hiking with Tracie and to sleep at Grandma and Grandpa’s. April isn’t a month to point out their differences to them. If anything, it is a month to celebrate those differences.

Casey is very proud of her puzzle piece flag on the front porch and they both like putting blue flags in the yard. We don’t do it for acknowledgment – we do it because they like it! We will wear blue on April 2nd because Casey loves it when we do. We are not doing it as if to say “hey look at us – this month is about us.” We do it because it makes our family happy. In our house, every month is Autism Awareness.

We spread awareness all the time. Every time we go to a store or visit a new place, we are spreading awareness of autism. We don’t need a special month to spread awareness, as my Facebook friend pointed out – most people have some awareness of autism now. We need to spread the joy we feel as parents of these amazing people! We need to show our pride. We need to support each other, as we all know we have bad days. Judging other families for how they live with autism is hurting everyone who lives and loves autism. Be kind. It’s really that simple.

So for this “Awareness Month” I’ll be sharing bits and pieces of our journey on our Facebook page and we will be proudly wearing blue and displaying our flags. Because every time someone laughs at something one of the kids did or thinks outside the box because we did, more lives will be affected. Maybe a teacher will try to be more like the ones my kids had or a parent will feel less alone. (Autism can definitely be a lonely journey at times. 🙁 )

Happy April, everyone! Spread pride and joy! Think of this as a month to celebrate your amazing family! Casey thinks we need a cake and Rob wants cookies. I think we can do that. Maybe I’ll even make them puzzle piece shaped or blue…. 🙂

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Autism and a Birthday Week

Autism and a Birthday Week

Casey loves birthdays. She loves to know everyone’s birthdays and can still tell me the birthdays of children in her preschool class! (thanks to her autism!) She hears someone’s birthday once and she doesn’t forget. It took me years (and sometimes, she still asks!) to get her to understand that we are not celebrating every birthday she knows, nor are we going to find those people and intrude on their celebrations.

As much as she loves other people’s birthday, nothing compares to the excitement she feels when it is HER day! She reminds me as soon as Mandy’s birthday is over in February that she is next. She doesn’t countdown – she just says “Casey will be 31 March 22.” Over and over… and she will make a list of what she wants. And where she wants to eat it. Everything must happen. This year, though, we saw that as excited as she is, she is willing for changes to happen.

My dad’s birthday is the day after hers and we have always had two celebrations. We wanted her to have her special day and even when we talked about combining them in other years, Casey wasn’t happy about it. Grandpa’s birthday was not the same day as hers and shouldn’t be celebrated on her day. (We always have her birthday party on her day – she can’t grasp doing it another day.) This year, she was okay with celebrating both together! It was a huge step for her!

She was a little concerned about how many candles we would need, as she said she needed 31 and Grandpa needed 74 (at which point Rob spoke up and said “105” and completely shocked me. He never talks about math and didn’t like it in school… this is just more proof they know more than they tell us and we should never doubt their abilities!). I told her we were absolutely not going to light 105 candles (though, now…. I kind of wish we did! 🙂 ) and she laughed. She has been okay with fewer candles on her cake for a few years – as long as she gets to blow them out and have everyone (including herself!) sing to her.

Another change this year was she decided she wanted “banilla pie with bananas” instead of cake! I was amazed she wanted pie instead of the traditional cake which usually has a Sesame Street character on it. I bought the ingredients for her pie (banana creme! lol) but was sure I would be making another trip to the store for cake stuff. She never changed her mind. She did keep reminding me that she wanted a new Ernie, summer PJ’s and money to go shopping. 🙂

She was up before dawn on her birthday. When I went to get her up, she bounced to me for a hug (WOW!) as I sang Happy Birthday to her. She had the sweetest smile on her face and couldn’t wait to start her day. They had her favorite doughnuts for breakfast and off to Hopewell.

As soon as they got home, she said she wanted McDonald’s for supper. I reminded her we could go anywhere (can you guess who didn’t really want that?? 😉 ) but she insisted. Mandy and Cory came for supper and then it was a waiting game until Grandma and Grandpa, Uncle Jeff, Aunt Angela, Lacey and Anna arrived. She was so happy to open presents – to find Sesame Street coloring books and books, summer PJ’s and money. Then…. Ernie!! She lit up when she saw how big he is and named him “Da Biggest Ernie” But, even better – Mandy and Cory bought her Elmo Fatheads (giant wall stickers) She wasn’t sure what they were at first, but was thrilled it was Elmo. Now he is all over her walls and she giggles when she thinks about that.

The funny thing is, once she had her pie (and a piece of Grandpa’s cake) she disappeared into her room. To her, her birthday was done. She didn’t care that her guests were still there, nor did she wait for good-byes from them. She had been running on excitement all day and she needed down time. She was happily folding socks as everyone left. Life is simply good.

I am still surprised that she was okay with sharing her party with Grandpa. (She did insist on seeing him on his birthday, which was no big deal. 🙂 ) I am surprised that Rob did that math. I am surprised that she asked for money to go shopping. I am completely in shock that she read every birthday wish she got on my personal Facebook page and our autism one. She carefully took my phone and slowly scrolled through them all. She loved seeing the GIF’s and the little pictures that people added to their comments. That was the first time she has ever shown any interest.

Autism constantly surprises me. Not always in as good of ways as this week, to be sure, but life is certainly never boring. Never, ever give up that your child will learn something new – that he/she will grow and change. You can’t possibly know the future. Keep your faith and enjoy every little surprise that comes your way.

By the way – Casey told me this morning that Grandpa’s birthday is all done… and it’s only 364 days (next year is Leap Year) until her birthday again and she will be 32. 🙂 🙂

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Autism – The Good, The Bad, The Ugly

Autism - The Good, The Bad, The Ugly

I got a message from someone who follows our Facebook page that informed me she was “unliking” the page because I was unrealistic with my views on autism. Against my better judgment, I asked what was unrealistic about my posts (because I really try to keep it real! 🙂 ) and she replied that autism isn’t the “rainbows and unicorns” that I believe it is and that a “real” mom would be praying for her children to be cured, not bragging about how far they have come.

Hmmm…… what?

I took a deep breath, counted to ten and tried to reply with kindness.

She again called me a bad mom for being proud of the kids and not just praying for a cure. She said I only shared fairy dust (she did like her pretty picture words, I’ll give her that. 🙂 ) and that her life was nothing like what I wrote about.

Yeah – and neither are my friends’ lives, lady. I tried again to be kind, as I truly believed she needed help and that God would want me to be kind.

She said that I make autism look easy and it’s not (yes – I write about good days – but I share the bad, too…. at least I thought I did). Then she made a comment about how I am ruining Mandy and Cory’s lives because Casey and Rob want to spend “too much” time with them. Unfortunately, she crossed a line. Mama Bear came out. Sorry, God – I really am – but I told her off and said she didn’t need to unlike our page as I was blocking her sorry self.

And that’s the ugly of autism. I still don’t get why she felt the need to tear us down. I mean, I know that when your life is hard, it’s hard to see others being happy, but really? Whatever, girl – move along. We don’t need your crap here. The ugly of autism is people who don’t try to see how amazing people with special needs are. It’s the judgments of people in public and who never learned it’s rude to stare and worse to make nasty comments.

When I started this blog and our Facebook page, it was simply a way for me to share our lives. I hoped that maybe, we could make someone laugh who hadn’t felt like laughing in a while or that we could help someone not feel so alone when they read that we are going through similar things. I didn’t count on the rude people (yeah – I should have… at least I can block them and Casey and Rob don’t have to hear their crap! 🙂 ).

I hoped that maybe something I tried with the kids would help another parent think of new ideas. To let people know that thinking outside the box was an awesome way to think. I wanted to connect with other autism parents so I wouldn’t feel alone at times. I wanted to let people know it’s okay to want to beg your son to go to sleep because you are so tired you just want to sit and cry.

I wanted to let people know it’s okay to be irritated when your daughter insists on tapping her socks (6 times each), her shoes (4 times, then 1 time – each!) then floor by the closet (3 times!) the hood of her coat (7, I think) the zipper of her coat (5 times, then 2 times – but only before she zips it, then it has to be tapped 2 more times – but only the first time she wears her coat that day – the tapping changes for each time she wears the coat during the day) when you are in a hurry to get out the door.

I wanted to let others know it’s okay to laugh when she jumps so her feet aren’t touching the kitchen floor when she turns the light on. And it’s okay to laugh when he fairy dances through the house. It’s okay to be tired of the same routines, of the same things over and over. It’s okay to want excitement in your life that isn’t autism related.

I try to share our good times as well as our rough days. Yes, my life is different from each one of you and what works for us may not work for you. I try not to make autism seem terrible. Some days it sucks, but not every day. Just like every other part of life.

And since my now blocked friend pointedly didn’t like me bragging about the kids… they did AWESOME at track and field last week! They were in a running race together – Casey took off and flew down the track. Rob jogged, he smiled at us as he ran by, he looked at the ceiling, he watched Casey running back to him…. and he fairy danced to the finish line. She got a blue ribbon, he got a red. She was excited – he didn’t seem to care.

They both enjoyed the basketball shoot and each got another ribbon. The noise was beginning to get to him, but he was still enjoying himself. The next slot was several activities they could choose from – and of course, he followed her wherever she went. She got a smiley face painted on her cheek – he got one on his hand (after our fiasco with the gray paint when he was the Tin Man a few years ago and the paint wouldn’t come out of his beard, he avoids paint on his face!) He was her shadow.

Yes, I am proud of them. That’s the part of the good of autism. I’m allowed to be proud of them. Everyone has abilities and talents, my blocked friend, and I can tell the world about my kids’. I do pity that you are so wrapped up in the bad, you won’t allow yourself to see the rainbows and unicorns! Maybe someday…..

If you are looking for a place to feel sorry for yourself, this isn’t the page for you. If you want to be angry all the time about your life, this isn’t for you. If you think autism is always easy, this isn’t the place for you.

If you want to find hope, laughs and new friends who understand you are happy, sad, mad, tired, exhausted, silly, and proud of your kids, welcome! We are so happy you are here!

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Autism and Caregivers – The Need for Self-Care

Autism and Care Givers

I’ve said many times that caregivers need to take care of themselves as much as they take care of their loved ones with autism. It’s hard to do – hard to think about yourself when so much of your time is revolving around their care. But, as someone who has crashed more than once (and hates to admit it!), you have got to think about yourself. Autism is hard on everyone in the family. It also can bring endless joy.

My mom will be very proud that I’m admitting this, as again, I’ve told you I hate asking for help. I’m supposed to be strong. Everyone tells me that I am. I can’t let anyone down and I have to handle all that life throws at me by myself. It sounds good, doesn’t it? And many days, I still feel this way. But, those crashes always remind me that I am NOT always strong and everyone needs help at times. It was a hard lesson to learn, but I’m getting there. 🙂

Autism can be hard some days. It can be physically, mentally, emotionally and financially exhausting. While my life is no longer a circle of doctor appointments, therapies and phone calls (times two!), I remember those days clearly. Add to that a lack of sleep for most families (for us – three years, then a break, then almost 10 years of either no or broken sleep), the every day stresses and often, financial issues (many families need two incomes, but with a child with autism, it isn’t always possible to find help – or to afford special care. Sometimes, it’s easier for a parent to stay home. And don’t forget the costs of therapies, doctors and medicines that insurance is only in the last few years been possibly willing to pay!).

Which brings me to my point. You will crash. You are strong. You are independent. You are everything to your child. And you will crash. You have got to find ways to take care of you. Sometimes, you have to be really creative – and let go of the preconceived notions that other people put on us!

Think back to before you had kids. What did you like to do? Exercise? Read? Craft? Fish? Play sports? Sleep? 🙂 Now you just need to find a way to do some of those things again. You need to eat right, even when you serve chicken nuggets or frozen pizza rolls for many meals. Just because your child is eating nuggets, doesn’t mean you can’t have something else. At least nuggets are easy to make!

This best way to take care of you would be to find something you and your child can enjoy together. Casey and Rob love to go hiking. When it’s a decent day (we don’t let cold stop us from walking at the park but the bitter cold and crazy weather has prevented us from going for a few weeks.), we go to the park and walk a few miles. The fresh air feels so good and it’s amazing to be doing something together! During the summer, we’ll explore state parks with Tracie. Besides being fun – it’s an inexpensive way to spend the day!

How about crafting with your kids? Or just coloring a picture? Casey and I both like to color, while Rob would rather line up the crayons and wait till he can scoop them up and run to his room with them. Would your children like to make cookies? Obviously, I don’t know your children – I’m just throwing out ideas of things you may be able to try, even with their possibly short attention spans.

If you like to play sports, have you tried teaching your child? It may not last long, but imagine how good it would feel to actually toss a football with your child. (That’s on my list for Rob this summer – just to try it. He used to love baseball, so I’m going to try and find a bat and ball and try that again.) How about shooting hoops? Swimming? (though if your child has no fears, that may be something you want to avoid.)

You need to recharge your batteries as a person, too – not just as their mom or dad. Here’s where you may have to get really creative and forget what you think you should be doing and do something fun! When your child is occupied with a movie or their iPad, read a book. Do a craft. Exercise. Watch a movie you love. Take a long bath. Build a model. Do some woodworking. Whatever you love – do it. Leave the dishes – you can wash those while your child is hanging on your legs.

Leave the dust. It’s just going to be back in a few days. Leave the laundry in baskets – you can fold that while you watch them. Yes, I know it’s easier without their “help,” but you need some time for you! Besides, if you fold laundry with them, they can help. It may not be folded exactly as you want, but it will be done, and your child will be so proud that they helped you. Rob used to draw pictures in the dust and then I gave him a Pledge wipe and he “erased” his pictures. Same thing with steamy windows – he would draw, then he would clean. Casey helps with laundry.

I know that time together is important to spouses, but if you can’t manage that often, take times getting away from the house with your friends. Take advantage if someone offers to watch your child. I know how hard it is – I really do, but you have to do it for you and for them. Invite friends to your home. Again, I know it’s hard to open your home to people or may not understand a naked child might come flying through the room, but you won’t know until you try. And truly, if someone is offended by your child, do you really want to be friends with them?

Let your child have the iPad or watch TV. Yes, too much screen time is frowned upon, but if it means ten minutes for you, who cares? You need to do what is best for you and your family – not follow the rules that “experts” make up. Take advantage of those minutes and relax. Watch crazy videos on Facebook and have some laughs. Have a snack without someone begging for a bite. Rest.

As for me, I do strength training and yoga several days a week. I walk as often as I can. I crochet and read. I stay up later than I should so I can have an hour alone. I eat junk food and enjoy every bite of it. I try to ask for help when I need it. I know this may sound impossible to you, but remember, my kids are older and are able (finally) to entertain themselves for a while. Plus, I’m always listening – when it gets too quiet, I run to see what is going on. 🙂

The point of this is to understand that it is really okay for you to think about you at times. I know it sounds selfish (and honestly, I still feel like that at times – I have to fight those thoughts!). Just keep telling yourself that if you can’t take care of yourself, you won’t be able to take care of your child…. and then what? You are in trouble.

It’s not easy to think of yourself first. It’s hard to put all the chores around the house on hold when you have a few minutes. It’s hard to get away and not think about your child. But you have to do all of these. You have to stay healthy – physically, mentally and emotionally to give your child the best care possible. That starts with you taking care of you, no matter how selfish that makes you feel.

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Autism Bright Spots and “HUH?” Moments

The last week was a month long. I have no idea why and it doesn’t really have much to do with autism – it just seemed like a forever week. For those who follow our Facebook page, you will already know about the “HUH?” moment I’m going to share, with a few more details. Our bright spots surrounded a night away with the kids and how awesome they did in a strange place.

When Rob gets dropped off after his day hab, he has a routine and nothing will deter him from following that routine. He drops his lunch box on the table, grabs his snack and pills and goes to his room to hang up his coat and put his shoes on the shelf. He chills out in his recliner a few minutes, then off to the bathroom and to find his iPad.

Friday, I got a message that they were home. A few minutes later, I got a text that Rob wouldn’t come in the house – that he had dropped his lunch box on the table and immediately ran out again. He was sitting on the front porch, holding his Power Rangers bag and wouldn’t tell Steve what was wrong. Steve told me he didn’t seem upset, but that he refused to come in. Luckily, Mandy was home from work and she only lives about 10 minutes from us so she took off to see what was up. (He will often talk to her when he won’t talk to anyone else.)

He was surprised to see her, but still wouldn’t share why he wouldn’t go in the house. She called Hopewell to see if something had happened that day (Casey told Mandy that Rob hit his head, he was crying – a whole list of things and Mandy didn’t know that Casey had been gone all day – she didn’t have a clue what he might have done! 🙂 ) and was told that it had been a normal day for him – nothing unusual had happened.

She asked if he wanted to talk to me and helped him call me. His conversation was brief “Hi Mommy.” “Hi Buddy, what’s wrong?” “Wrong.” and he handed Mandy the phone. I was actually able to leave the preschool early and was in the parking lot when he called. She said he wasn’t upset, but wouldn’t tell her anything. The thoughts going through my mind were crazy, but I couldn’t help it.

When I turned onto our street, he stood up and walked to the driveway. I stopped beside him, he jerked open the back door, opened his bag, threw an old towel in the backseat and went in the house. Mandy and I just looked at each other – each trying to process what the heck had just happened. Finally, she broke down laughing and I did, too. By the time I had parked, he was happily in his recliner, like nothing had happened.

We still have no clue what that was all about. I do keep an old towel in the car for Blue, but there was one on the seat. Now, there are two. When Rob got in the car yesterday, he tapped the towels and grinned. Trust me – I’m not moving those towels!

I had made reservations for us at a local hotel so the kids could swim and soak in the hot tub for a treat. I didn’t tell them we were going until just a few hours before we were to leave -just in case! They were so excited when they heard what we were doing – Rob couldn’t stop saying “swim, swim, swim.” and “Mandy, Cory, Mandy, Cory.” We got to the hotel and as I was getting our room, the lady said the pool was closed. I thought she had to be kidding! But, no, it was broken.

I couldn’t even imagine how telling the kids was going to go. They were both sitting with huge grins on their faces, just waiting to get in the water. A few years ago, I would have had to drag Casey out, probably kicking and screaming. I walked over and told them the pool was broke and we had to find another one. They both just looked at me, but when I said we needed to go back to the car, they did with no issues. A proud mom moment!!

We found another hotel and they took off for the pool. Casey slowly went down the steps while Rob took a running leap into the middle of the pool. She stayed where she could safely touch while he was jumping and spinning and splashing. And it was another bright spot. Rob always tends to follow what she does, but not this weekend. He wanted to jump and sit on the bottom of the pool so he ignored her and did what he wanted. That was another huge moment for him!

They played for an hour or so, then had supper and rested a little, before heading back to the pool. He played for almost two hours while she kept reminding Mandy that she said they could get ice cream. Instead of following his sisters to get a treat, Rob chose the pool. Even when they came back with a Coke for him, he drank it and jumped back in the water.

He was so happy! It was wonderful watching him smile and jump and to hear his deep belly giggle as he fell into the water over and over again. I finally told him the pool was closing and it was time to go back to the room. He took a shower and went to bed. He had a hard time going to sleep, but he was quiet. He is so used to a nightlight and a fan, that I think the total darkness and complete quiet made it hard for him. Finally, about 2 this morning, I turned the TV back on. He watched a few minutes, rolled over and went to sleep.

He jumped back in the pool this morning for an hour while Casey and I sat and watched him. Even when I said we needed to head home, he jumped a few more times before he came to get dressed. Now, he is sound asleep in his room. Hours and hours in the pool wore him out!

Mandy and I asked him questions while he was in the water and were surprised at how many things he could easily answer – his birthday, how to spell the city we live in, so many things. It was wonderful! Casey used to be able to do that when we still had our pool – she could answer questions while playing in the water that she couldn’t answer any other time. If you ever get a chance, try this with your child!

Sometimes, bright spots in an autism home aren’t like they are anywhere else and that’s okay! Every family has it’s own special moments in time – celebrate every one of them! Enjoy the special talents your child has. And, even though it’s scary – plans things as a family! You never know until you try what your child might enjoy. And those special family times are so amazing! I’m tired now, but can’t stop smiling at having the chance to spend that much time with Casey, Mandy, Cory and Rob.