Tag: autism parenting

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Trying to Find Medical Help for a Person with Autism

Unless you have a family member with autism or another special need, you have no idea how hard it is to find a doctor or a dentist to help you. We were so blessed that we had an amazing family doctor since Casey was born. The kids loved him and he was so awesome with them. Their neurologist is a great guy, too.

But, our family doctor retired a few months ago. We have met our new doctor and Rob seems okay with him, but … it’s different and it’s scary. Casey hasn’t met him, yet. He didn’t really attempt much conversation with Rob. I know it’s hard, but beyond saying hi to him, he didn’t try to engage him at all. But, since Rob reads people so well and was cooperative with him, we’ll stick with him.

Dentists are another story. When Rob broke a tooth and was in pain and fighting infection with it, it took almost six months to get it fixed. I was so relieved when we finally find a dental clinic that would see him, take his insurance and didn’t have a year waiting list. He seemed to like everyone there, too.

So, last October, at his regular dental visit, a cavity was found and another place of concern. I didn’t think too much about it, as I knew the clinic was amazing with him. Until I called them and discovered they no longer did sedation in the office and there was at least a ten month waiting list for an appointment for an operating room. He gags easily, so he needs to be sedated for all dental work.

That day, I started making calls. I called his insurance company to help. They sent me a list of dentist in Ohio, but that was it. I called more than 50 places, trying to find help for him. I knew there was a dentist in our town that did sedation, but they don’t take Rob’s insurance and when I asked another clinic if I could self-pay, I was told that was insurance fraud. (I still don’t know why!)

I called the local dentist and the girl who answered the phone was just so sweet. She answered all of my questions and said they would be happy to see him and let me self-pay! They do sedation in the office, but he won’t be completely asleep, just very relaxed. We had to do several appointments to make a plan, but he has an appointment this Friday to get his tooth fixed and to have the other spots looked at closer.

I’ll be honest. I’m worried. I’m scared. I don’t know how he will do. Most of me thinks he will be fine. He lets blood be drawn with no issue, so I don’t think he’ll mind the IV. (The dentist even checked his arms last week to find the best place and Rob didn’t care at all about that.) But….

What if this sedation isn’t enough? What if he isn’t relaxed? What if they can’t fix his tooth? I truly do not know what we’ll do. I’ve already called so many places and no one was willing to help. Mandy keeps reminding me that both Rob and Casey have grown and changed so much over the last few years and I know that.

But, I’m still anxious. Rob knows he needs to get the tooth fixed, but he doesn’t know when, yet. He won’t be anxious about the dentist, but he will not be pleased that he might miss time with his buddy, Bob, that afternoon. So I’m saving both of us from a week of him worrying. I’ll tell him Friday morning and Bob is already planning to get him that afternoon, assuming he feels up to it. I’m sure he will – if only I was as sure about the tooth being fixed.

Autism adds so much anxiety to what should be a simple fix. I shouldn’t have to call 50 dentists to find someone to help him. And when I did find someone, I was told they weren’t even making appointments until 2026 because they were so booked up. Broken teeth can’t wait that long. Other specialists are just as hard and so many doctors don’t have any experience with autism. It’s sad, stressful part of autism that isn’t talked about much, except by families desperately trying to find help.

If you happen to know any high school student looking for a possible career, point them to dentistry for special needs. They will never lack for patients, that’s for sure!

Our new book, “I Wuved her First” is coming this summer, but if you would like to read more about our adventures in autism, check out my first book, Autism, Apples & Kool-Aid, available here.

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My Child has Autism – What do I need to do?

First, please remember that your child is still the same person they were yesterday, before the diagnosis. They still love you. They still have their favorite foods. They still like the same shows. Nothing has really changed except your perception of your child. Autism is only a small part of them, like the color of their hair. Autism is not the total package.

Now for the practical stuff. Buy a binder or a file folder and start keeping all of the paperwork you get from doctors, therapists and schools. If you child is little, you never know what you will need when they are older. Keep it all now. You can always shred stuff later that you don’t need. I recommend shredding or destroying all paperwork. People with disabilities have a high rate of identity theft and that’s not a headache you need.

As your child gets older, you’ll be surprised how many times you will be asked for the original diagnosis letter. When Casey was diagnosed, the doctor made notes in his file (on paper) and that was it. I had to call and get a copy of those notes when we needed it. These days, with everything on computer, it’s much easier and you usually leave the office with paperwork.

Keeping all of the papers is so important, but I really think the most important thing you can do for yourself and your child is to find other families who are living with autism. My best friend has been with me since we were five years old and has been through everything with me. She loves me and the kids and would do anything for us. She has heard my anger, my frustration, my exhaustion. She has held me while I cried.

But, as much as all of that means to me, she doesn’t live with autism. She understands, but it’s different talking to another autism parent. They “get it” in a way that no one else can.

So, find your tribe. Find another autism parent or group of parents. You will need them. Ask your child’s school if they can connect you. Ask your doctor if there any resources, like support groups, around. If nothing else, find a Facebook page and just read what other parent’s are doing. It helps you to not feel alone.

Follow our Facebook page. Send me a message. Sometimes, it takes me a few hours to get back to people, but I will. Just chatting can help you. I have several pages I follow and each one offers me something different. Whether it’s a mom who can be sarcastic like me, a mom of a non-verbal teenager, a mom with a son who is in a college program, a mom who shares memes and makes me laugh or a young man with autism who offers suggestions that might help Casey and Rob. I follow them and listen and learn.

Social media connections may not be the perfect support, but they are better than being alone and scared. Reach out. Let us be your group until you find one in person. Autism is hard. I’ve been living with it for almost 37 years and I still have days that I just want to cry because I’m tired and frustrated. Reach out. Don’t be alone.

If you want to read more about all of our years with autism, you will want to grab our book, Autism, Apples and Kool – Aid, available here. And our new book, about siblings, will be coming this summer! I’m so excited to write this with Mandy!

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Autism and the Endless “Why” Questions

What do you see in the picture with this post? It’s a simple snowflake Scentsy warmer, right?

Nope. It’s a picture that symbolizes the hundreds of questions autism brings into my life every single day.

I actually thought something was wrong with this warmer. I just got it a few months ago and hadn’t used it, yet, but there has been a warmer in the bathroom for years. I change the warmer for different holidays or seasons and you never know what scent I’ll be using (but, since I really don’t like anything too strong, the scents are usually baking scents, like sugar cookies).

I put this out after Thanksgiving and noticed that it would be off sometimes. As far as I could tell, it happened when no one was around, so I couldn’t figure out what was going on. Finally, I walked out of the bathroom, Rob walked in, and when I checked right after he went back in his room, the warmer was off.

I started watching and it was him. Rob turns this off every time he sees it on. He can’t tell me why – he just grins and walks away.

But – why?

Why doesn’t he like this one? None of the other ever bothered him. It can’t be the scent because I change it every week or so and it’s never strong. (Though I do know he and Casey both have a different sense of smell than I do!) But it’s also the same scents that I’ve used in all of the other warmers.

Again – why? Why turn this off every time? Why not the others? (And yes, one of them is white like this, so it can’t be that it’s brighter).

Which brings up… why will he only eat a certain brand/shape of pretzel at home, but he’s okay if I pack different pretzels in his lunch? Why can he eat different brands and shapes at Mandy’s and my parents? Why does he only want frozen waffles here but every where else, he wants them in the toaster with butter and syrup?

Why does his cup need to be in a very specific spot by the kitchen sink (kind of in the middle of the counter) when he’s done drinking during the day, but first thing in the morning and after his shower, it has to be somewhere else?

Why does Casey still insist on tapping things as she’s getting ready to go somewhere? Why can’t she bring her coat downstairs to put it on? Why does the thought of eating leftovers make her gag?

Why does she need to walk in front in some stores, while he has to walk in front in others? Why does it matter and who decided the routine? Why won’t he watch the TV in his room, but will watch DVD’s on the one in the living room? Why will she watch home movies in the living room, but not her room? (She does watch other DVDs in there, but not the home movies).

Every day, autism throws more questions at me. I know I will likely never know the reasons for most of what they choose to do. I know a lot of it is sensory based and a lot is just routine, but some of it just seems so odd to me. I would just love to know why. Not that it really matters. They will still be the amazing adults with autism that they have been for years.

I’m just curious. And if I knew why, maybe I could prevent their anxiety and stress, if I knew what not to do. (Trust me – I do know lots of “never do this” stuff, but the little things really make me think.) I want to know why he doesn’t like that warmer at all. Honestly, it’s kind of freaking me out a little, so I’m packing it away as soon as I finish writing this. I have no idea what he senses about it, but he doesn’t want it on and that’s good enough for me.

One thing I do know after living with autism for almost 37 years… The “why” questions will never stop, so I might as well laugh about them!

If you want to learn more about their sensory issues or our adventures with autism, you will enjoy our book, Autism, Apples and Kool-Aid, available here. Our new book about siblings and autism will be available in July.

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I Loved her First – The Story of Siblings and Autism

Yes! I’m so excited to announce that there will be another Autism, Apples and Kool-Aid book coming this summer. We are still working on the title, but “I Loved her First” is a possibility. Mandy and I will be co-writing this book to share her thoughts and adventures having two siblings with autism and how that has affected her life. I’m sure you will want to read her stories.

The possible title comes from Rob. He often uses song titles or lines from movies to help him share what he is thinking. (Don’t ask how many copies of the original Willy Wonka and Wizard of Oz we went through on VHS!) A few months ago, Rob was looking at pictures on the refrigerator and took down one of Mandy and Cory. He touched it carefully and said, “I loved her first.” This is a song by Heartland.

While the song is about a dad watching his daughter at her wedding, it completely describes Rob’s feelings for Mandy. Rob and Casey are typical siblings – they look after each other, they tease each other, they ignore each other. They love each other. Rob keeps an eye on Casey when we go anywhere. He protects them both.

But, Rob absolutely adores Mandy. Even as toddlers, they were a matching set. What he didn’t think to do, she did, and he followed right along. We just watched a home movie last night. Rob is a baby, maybe 8-9 months old, and Mandy is 2 1/2 or so. Even that young, he watched every move she made and smiled/laughed at her. She is the reason he crawled and walked early, determined to be where she was all the time.

If she wanted to play dress-up, he wore dresses (along with his Mickey Mouse ball cap). If she wanted to play Barbies, he brought cars to the Barbie house and played. If she wanted to jump on the trampoline, right there he was. Mud pies? Let’s do it.

But, for all of his adoration, she annoyed him at times and he never let her forget it. I can’t count the number of times I looked outside to see him sitting on the ground by a tree, with her in the tree. She made him mad and he was waiting for her. A light smack when she finally came down and life went on as always.

Casey loved holding Mandy as a baby. When Mandy got bigger, Casey laughed at her and liked to play beside her to show her toys. But, Casey never idolized Mandy like Rob does. Casey trusts Mandy – she knows Mandy will always make life fun. She always knows exactly what buttons to push to annoy her sister. Typical siblings.

Mandy says she doesn’t remember her childhood like I do. I remember regrets of not spending enough time with Mandy. I remember telling her we couldn’t do things because Casey or Rob wouldn’t like it. Mandy remembers fun. I’m so grateful for that.

But, even with the fun, Mandy is the first to admit autism wasn’t always easy or fun. In our new book, she’ll share some of the not-so-fun times. It is our hope that other siblings will realize they are not alone and that their feelings are perfectly normal. Typical siblings feel anger and resentment, too. We all do, but siblings of autism are often told they shouldn’t feel that way because their brother or sister has autism.

Not true. Feelings are justified and we want more siblings to know that.

Every time I share a post about autism and siblings, it is shared often and gets lots of comments and questions. Mandy and I decided to really dig into their relationship and offer some ideas to help other siblings and families with the delicate dance of autism. I did talk about siblings in my first book – Autism, Apples & Kool – aid – available here. The new book will be just about autism and siblings. I’m sure you will enjoy it – and hopefully, learn a few things, too.

Look for it in July!

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Slow Down and Really Look

I needed this reminder. The last several weeks have been so crazy busy that I feel like I’m just going from one thing to another without really paying attention to what’s going on around me. Don’t get me wrong – we are having lots of fun together and have lots of adventures planned, but something happened yesterday to remind me to really look around.

Our autism support group is donating a Christmas tree to be auctioned off to benefit the Firefighter’s Toy Chest in our community. Yesterday, several families met so their kids could decorate an ornament however they wanted. It was a beautiful fall day and Casey and Rob were so excited to go to the playground for a while.

I, on the other hand, was not feeling great and really wanted to just stay home. I couldn’t disappoint them, though, and I knew we wouldn’t be gone long.

Rob and Casey had already decorated their ornaments, so they headed straight to the playground. He jumped on a swing, but after a little while, Casey came back. She sat on a bench and just watched the kids. She had the most beautiful, peaceful smile on her face and it was obvious she was enjoying yourself.

As we were cleaning up, another mom, Keisha, asked if Casey was always smiling. I laughed and said no – remembering the night before when Casey was not pleased that I wouldn’t write Christmas activities on her calendar, yet.

Keisha said that she and her husband had talked about Casey – that whenever they see her she has the most beautiful smile and always seems so happy. I stopped cleaning up and looked over at Casey – really looked at her – and saw how happy she was to be at the playground and outside. Her eyes were twinkling, her feet were bouncing and she was smiling bright enough to rival the sun.

It hit me then. I see her smile often, but sometimes, I am so busy trying to think ahead of them that I don’t really notice it. I don’t stop and appreciate how happy she gets over the smallest things. She doesn’t need much to make her happy – any trip, anywhere is enough to bring a smile to her face and twinkles in her eyes. Going to Grandma and Grandpa’s causes giggles all the way to their house.

Rob’s smiles are just as magical. He doesn’t show his excitement as much as she does, though. He tends to wait and make sure that wherever we are going is worth the trip. He is such a homebody. He enjoys activities, but only with people he feels safe with and preferably no crowds.

I wish we could all be more like them. To be happy with small things. I tend to be – a pretty flower or a text from a friend always makes me happy. But I know I need to slow down more and really look around. I need to notice the miracles around me every day, like her smile and his giggles.

Life with autism isn’t easy. It’s hard to slow down, sometimes, but I’m urging you to do just that. Sit on your porch and look at the fall leaves. Listen to some music and just sit. If we don’t slow down, we’ll miss the smiles that everyone else sees!

If you want to read more about our lives with autism, check out our new book! I hope it makes you laugh and gives you hope! Here’s the link Autism, Apples & Kool-Aid.

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Autism and the Here and Now

Autism and the Here and Now

One of the worst things an autism parent can do is focus too much on the future. By that, I mean that you get yourself too scared of the “what ifs” to really see the small steps your child is making every day.

Life is too overwhelming if you focus too much on what your child needs – there is so much! Obviously, you are always aware of those needs and they are never far from your mind, but you can’t live your life that way.

You need to stay present to help your child. For example, if your child is having a meltdown, don’t start thinking of a future full of screams and kicking. Take slow deep breaths and only focus on the next minute. Get through that one and think of the next. If you start thinking this will be your life forever, you will have a meltdown, too.

When we are having a bad day, I forget about everything. All I think about is getting us through that day. Tomorrow will take care of itself. You can’t help your child through a bad time if you are thinking of tomorrow or next week or next month.

After your child calms down is soon enough to think about what needs done to prevent it from happening again. Do you need to schedule a doctor visit? Adjust medications? Talk to the teacher? One small step at a time.

Yes – you want to dream and have hopes for your child – always! But thinking too far in the future during a bad time will only make you think you are dreaming too high. Some days, your focus simply needs to be to take that next deep breath.

It’s the same with the endless paperwork. If you feel overwhelmed by it, you might not even start. So tell yourself you will only do one page and stop. When you break it all down into very small steps, you get it done without losing your mind. (By the way… When you fill out forms, make a copy. It’s do much easier the next time when you have all the information right there!)

Yes, plan for the future, but keep your plans fluid. Every day, your child will change and plans may need to reflect that. Just don’t let the future turn into a black hole. When you are having a rough time, stop thinking too far.

Remind yourself all you have to do is breathe. The next minute will take care of itself.

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Autism and Teaching Life Skills

Autism and Teaching Life Skills

When you have a child with autism, life skills need to be high on the list for what needs to be taught. I’m not saying that typical school subjects aren’t important, but life skills will help your child gain a little independence – even if they always live with you.

I’ll admit – while Casey and Rob do have chores to take care of, I haven’t always pushed them to do more. When I’m tired, I just want things done – not take the time to show them how to do something. I try to remember, tho.

Over the last few days, I’ve been reminded how much Rob loves to help me. And that Casey will usually say “no” as she’s getting up to do whatever I asked. After several months of dealing with a foot injury, I ended up in a hard cast and am supposed to stay off my foot as much as possible.

Luckily, I’m able to put weight on it for a few steps here and there, so I’m not completely helpless and I have a knee scooter to get around the house with. But, doing some things are a little tricky.

So I’ve asked Casey and Rob to help. He filled Blue’s water dish. She got the crock pot for me. He poured drinks for lunch. She folded laundry. They both packed their own lunches yesterday.

Are these huge things? Maybe not, but it shows again how important it is for our kids to understand they are part of the family and need to help when they can. Casey laughed about getting the crock pot and he was so proud he carried a bowl of water without spilling it. So, yes – these things are huge!

When there are so many other things your child with autism needs to learn, I understand that life skills are just a bother. But – imagine how much easier their life will be if they can brush their own teeth – wash their hair – choose their outfits. (I’ll be the first to say Casey sometimes chooses … How do I say this… Loud outfits, but she’s happy and excited, so who cares??)

Having autism is not an excuse to do nothing for yourself. Let your kids learn that – autism is not a free pass. Having said that, obviously, there are better times than others to work on life skills. If your child’s anxiety is high, you’ll make it worse forcing them to perfectly brush their teeth. But, teach them!

People with autism are capable of so many things, but they have to be given the chance to try. Will they succeed the first time? Probably not… But do you? How many things did you have to try over and over before you got it? Why should your child be any different? Again – autism is not an excuse!

Rob likes to help with cooking and to clean mirrors/windows. Are they always streak-free? Nope, but they aren’t always perfect when I do them, either. He likes to flip pancakes. Sometimes they land where he doesn’t want them to. So we try again.

Casey always folds her clothes and has to be reminded to fold others, but she will. She will help with cooking as long as it’s not near the stove – she is very worried about getting burned.

I’m sure in the next few months, they will continue to surprise me with what they can do. And what they are proud to do to help me. Let your children help you before you need the help. Give them the chance to be proud of what they can do. It’s the best of both worlds!

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Autism and the Art of Letting Go

Autism and the Art of Letting Go

When you have a child with autism, fear is never far from your mind. Fear for their safety. Fear they will need something and not be able to communicate that need. Fear they will be teased. Fear they will be lonely. The list goes on and on. But, despite the fears, you have to let them go. You have to let them try new things, go new places, meet new people. Will it always be a good experience? Probably not… but you have to let go.

One of the pages I follow just had a post from a mom who is upset that her son’s teacher wants to transition him to another class. She is actually pretty mad about it. She thinks her son is not ready and is not telling everyone how much he is regressing, despite glowing reports from his therapists and aide. She asked for help in forcing the school to do what she wants.

The thing is, I completely understand her fear. It’s terrifying to let your child be near new people that you don’t know. It’s scary to change a routine that he/she depends on. And really, as autism parents, we learn to live in that routine and we don’t want to change it, either. It’s what we know. But, your child deserves the chance to try. By holding your child in the same place, it may be easier on you, but it also keeps your child from growing. It’s not fair to your child.

I’m sure this mom sees behaviors at home that the school doesn’t see. I’m also sure that her son shows more skills at school than he does at home. Every child does. I’m constantly hearing about things that Casey and Rob will do for others, but when I ask, they look at me like I’m speaking in German. Let’s face it – kids always act worse for parents because they know no matter what, we’ll love them forever. When I was teaching, so many parents would say they had no idea their child could do something because they refused to do it at home. It happens.

But, if your child’s teacher and therapists are seeing amazing progress, it’s time to let go a little. No good teacher will move a child before he/she is ready. Ask for a meeting with the teacher and therapists and listen to their plan. You may not like it, but you can ask questions and share your concerns. Go meet the new teacher. If it’s a new school, tour the entire school and take your child to visit.

The change in routine may not be easy and you need to understand there may be a few rough weeks or months, but ultimately, pushing your child to stretch and learn is what you need to do. You know how you feel when you try something new and really like it? Your child deserves the chance to find what they like, too. They need pushed to keep learning and growing.

Try not to let your child see your fears. Make the change sound like fun and, if you have to, pretend you are excited about it. Do what you need to do to alleviate your anxiety. If the teacher is a good one, he/she will completely understand your anxiety and will do everything they can to help you. Visit the class and see the children who will become your child’s friends. See how the teacher runs the class – you’ll be able to offer her/him ideas on how your child will fit in the best. You can share your child’s strengths and your fears.

With autism, change is rarely easy. Life is unpredictable and it won’t hurt your child to learn that. The good thing with letting go is that you can prepare your child (and yourself!) for changes and grow together. It’s scary. But letting your child try is the best thing you can do for him/her. Remember – always reach for the stars. You won’t get there if you keep your child in one spot forever.

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Autism and Changing Medications

Autism and Changing Medications

Casey and Rob both got glowing comments from their doctor last week. He was so happy with their progress and loved that when he walked in the room, Casey looked up and said, “Hi Max!” (his first name! 🙂 ) I reminded her that she needs to call him Dr. Wiznitzer, but he laughed and said she could call him anything she wanted.

During their visit, we decided to try lowering Casey’s medications again. We made a huge jump over the last year in the amount she takes and are hoping she can continue to wean off of it as it is one that can increase her appetite. She doesn’t seem to have an opinion one way or the other, but when I told her Friday morning she only needed half of the pill, she looked at me and said “Not sick?” Honestly, that broke my heart – that she has been thinking she needs to take pills because she is sick.

So we had a short and sweet talk about how taking pills doesn’t always mean you are sick – that sometimes, pills help your brain work better. I told her the white pill helps keep her from getting upset. She couldn’t have cared less – she only wanted her yogurt and her iPad. But, at least I tried.

I knew the doctor would want to talk about reducing Rob’s, too. He’s been pretty stable for about two years, so it was time, but man – I’m worried. His anxiety can be ugly and painful and I’m honestly scared to death about lowering one of them. But – I don’t want him taking medications he doesn’t need anymore, so we’re going to try. Slowly. Right now, three of his medications can cause weight gain, so for his health, we need to lower them, if possible. Slowly. Can I repeat that?? Slowly!

Finding the right dose for medications is so hard. Most of the time, several medications need to be tried until you find the one that works without making the person feel “off.” And then increasing the level until you see they are helping. It’s a frustrating process.

And lowering them is just as hard. How do I know if Rob’s anxiety is caused by the lower dose or the full moon? Or the wind? Or something that happened that he can’t tell me about? How do I know if he is talking more because he’s trying to ease anxiety or just because it’s a beautiful day and he wants to sing? Is Casey getting irritable because of the lower dose or is she just having a bad day? (And – let’s not forget – autism or not, people have bad days!)

I know that I won’t see any difference in them, yet. It’s only been a few days and the medications need to work out of their systems, but I’m dreading the next few weeks. I’m tired just thinking about it. Should I be? No, of course not – all I have to do is give them their previous doses. The doctor was quite clear on that – I don’t even need to call him back. Just give it to them.

No – I’m tired knowing that I can never be sure why they are acting the way they do. I can’t be sure it’s the lower medication. I’m tired thinking of them not sleeping or of his anxiety or her getting irritated at the smallest thing. I’m tired before I need to be. That’s the thing with being a parent to someone who can’t easily communicate their needs – every thing I do is a guess. Sure, sometimes, now, they tell me when they are sick and need to see a doctor. But will they be able to tell me that they feel better with more of their medication? Probably not.

It will work out of their system so slowly, they may not even feel it – until the irritation and anxiety show up. And, if it does show up, I still need to wait a few days to see if it’s just a bad day or whether the meds need to be bumped back up. I think Casey will be okay with the lower dose – and it is much easier with her. Her irritation is obvious.

With Rob – it’s hard. He loves to vocally-stim. Which is what he does – louder – when his anxiety is high. It won’t be as easy to see. I’m tired just thinking about what the next several weeks might be like. I’m trying to ignore the negative and think positive! But, I’m also a realist – I’ve been through medication changes too many times to think they are always for the best. Fingers crossed!

What I want you to remember is that you know your child better than the doctor does. Listen to his/her advice, but make sure you share your thoughts! Do some research on the medications that are mentioned – ask your pharmacist questions, too. If you aren’t comfortable with a medicine, ask what other options there are. And if your doctor won’t listen to you, find another doctor. You have long journey ahead of you – you need a doctor you can trust and who is willing to listen to your thoughts. Write down your child’s behaviors when you start the medicine and keep a journal – that is the best way to know if the medication is working. Trust me – you won’t remember as much as you think you will.

Wish us luck. Maybe send a twelve pack of Coke and some dark chocolate our way. I may need it! 🙂

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What I Wish I had Known as a New Autism Mom

What I Wish I had Known as a New Autism Mom
What I Wish I had Known as a New Autism Mom

Later this week, I’ll be taking Casey and Rob to their annual neurology appointment. I just realized that I have been making this trip – two hours from home – for 29 years. Casey was 4 when she was officially diagnosed and I was nine months pregnant with Rob. For the first two years, I had to take Casey every six months, then, when things got especially crazy for her, we went every three months for two years. By the time Rob was diagnosed, we were back to once a year.

I was thinking about the mom I was way back then. I remember being in the doctor’s office and not being too upset when he said “autism.” I had a pretty good idea before we went and, honestly, my biggest concern was to make it home without going into labor. She wasn’t sick, she wasn’t in pain. How bad could autism be? (remember – this was before everyone knew someone with autism and not much information was available anywhere!)

Casey was already in speech and a special needs preschool so there wasn’t much I could have changed. She adored Mandy and she loved her teachers. She was fearless. At that point, she just wouldn’t say much. Again – how bad could autism be?

If I could talk to that young mom from back then, I have so many things to tell her.

I would tell her that there would be days that autism would suck. That there would be days she would sit on the kitchen floor and cry from exhaustion. That sensory meltdowns would be terrible – that she would feel helpless and alone as she tried to help her beautiful little girl.

I would tell her that autism is amazing. That every day, she would find something to be happy about. That she would never take for granted a smile or a hug. That she would be happy with any words – even the ones that Casey shouldn’t say, just because she was talking! I would tell her she is stronger than she thought.

I would tell her that there are more good people than bad in this world, but that bad people are louder and meaner than she could imagine. I would tell her that standing up for her daughter would be hard and she would make people mad – but she would learn to not care. I would tell her that, even as she hated being “that mom”, people would come to respect her strength for fighting for her kids.

I would tell her that it doesn’t matter what others think. That Casey had every right to go places and try new things – and if someone didn’t like it, tough. I would tell her to not be embarrassed about autism. That she should live her life as she wanted and show Casey a world that wasn’t quite ready for her.

I would tell her she would experience lows that she wouldn’t think she could get through – but she would. I would tell her the happy times would far outweigh the bad, even when she felt the bad times would never end. I would tell her to keep dreaming for Casey, Mandy and Rob – that they would be fine.

I would tell her to ask for help when she needed it – that it’s good to be strong, but it’s okay to need help, too. I would remind her that her family was only a phone call away – she just needed to pick up the phone and ask. I would tell her that she can’t imagine the hurts that she will have to deal with – but that she would deal with them and move on…. stronger and happier than ever.

I would tell her that the struggles would be worth it. That she can handle anything. That when she worries, it’s worries that Casey and Rob don’t care about. I would tell her that Casey and Rob (and Mandy!) would struggle, but she will be able to help them. She will teach them strength and resilience and kindness and fun. She will laugh with them – she will be messy with them. Most importantly, I would tell that young mom that her kids will be okay. They will be amazing.

I would tell her that professionals aren’t always right – she will know her child better than anyone. It will be hard to stand up to them, but she can do it!

And that’s what I want all new autism parents to know. You will struggle. You will cry. You will be furious and hurt and tired and stressed. You will also be blessed to be able to be grateful for the little things in life. You will see the magic in every day, because your child will show you. It may be hard to see at times, but you will learn to see the love and you will know that through everything else, autism won’t define your child any more than the color of their hair.