Never Stop Advocating!

I started this blog on May 5, 2010, shortly after JD was diagnosed with autism at the age of two. I can't believe it's been almost 15 years that we've been on this journey together. I remember when JD was first diagnosed, I was absolutely terrified. I didn't know anything about autism because it was still one of those things that no one really talked about. I would scour the internet at night looking for articles, blogs, videos - anything I could find about people's experience with raising an autistic child. The resources were there, but you had to do a lot of digging to find them and that's exactly what I did (and still do!). If there was ONE piece of advice I could give to a parent of a newly diagnosed child or teen, it would be to never stop advocating for your child! 

Part of being an autism parent is learning how to navigate the world of therapy options, insurance, doctors, evaluations, behavior plans and education plans. It's learning to work with teachers, therapists, school administration, IEP advocates, doctors and counselors. Your job is to learn as much as you possibly can about your child and their diagnosis, and then create a plan to help them succeed as best as possible in a world that is not made for them. That boils down to being their advocate. But what does that actually mean? 

How can a parent advocate for their child? Let me give you some ways:

• Learn as much as possible about autism, including your child's specific needs and rights under laws like IDEA and ADA.
• Keep a well-organized folder of all evaluations, medical records, therapy notes, and communication with schools.
• Attend IEP meetings prepared—review the plan beforehand and bring notes or support people if needed.
• Collaborate respectfully with teachers, therapists, and school staff to build a supportive team around your child.
• Teach your child to self-advocate in ways that work for them—help them express needs and build confidence.
• Join support groups or online communities to connect with other parents for support and shared knowledge.
• Educate your family, friends, and community to build understanding and reduce stigma.
• Speak to local officials or school boards about better services and inclusive policies.
• Prioritize your own mental and physical health—strong self-care helps you continue advocating effectively.

These are just a FEW things you can do to help your son or daughter on the spectrum. But advocacy never ends. JD is now 17 and I STILL advocate for his rights or needs. 

He's THRIVING and I'm so proud of him! He's a straight A student in high school (11th grade) and wants to become an engineer or business owner one day! Advocating for him has been my greatest life accomplishment! 💖

JD's Accomplishments!

One of my autism mom friends posted on Facebook the other day about how excited she was that her daughter ate a turkey sandwich for the first time. I could totally relate to that post - I remember a few years ago I paid JD $20 to eat an entire plain hamburger (which probably seems insane to parents of neurotypical children) but it was some of the best money I have ever spent because to this day he'll eat plain hamburgers! You do what works, right?

My friend's post also made me realize that I haven't blogged about JD's accomplishments in a long time! Things don't always come easy to people on the spectrum, so when they achieve something it should be celebrated - no matter if it seems small or insignificant to other people!

JD's actually made quite a few big accomplishments this year and as he's grown up, I've become so impressed by his increased maturity and patience. Things that I thought were impossible before are now happening and it's really exciting!

His Own Bedroom

I think one of the most exciting changes that happened this year was JD moving into a bedroom by himself! Since he was a toddler, he has shared a room with his little brother and I honestly thought they would share a room until Kyle left for college. But a few months ago I noticed both boys asking for a little more space so I mentioned moving into separate rooms and they took me up on it! I thought JD would have a really hard time sleeping without his brother right next to him but he didn't have any issues at all! (Of course, his brother's room is about 3 feet from his room so it's not THAT far away, but still - it's a change!) 

Starting Orthodontia

JD has been a thumb sucker since he was a baby and never stopped. As he got older, he only sucked his thumb while he slept or when he was stressed, but it was still a habit that we had to stop. We took him into the orthodontist and they put a habit appliance on the roof of his mouth that keeps him from sucking his thumb. The first two weeks were not good - he couldn't sleep at all - but it's been about 6 weeks now and he's completely used to it and has stopped the habit for good! They will keep it in for another two months just to make sure he's completely stopped, and after that he'll get braces! I'm really excited because I didn't think he'd be able to handle any orthodontia in his mouth because of his sensory issues. But he's done REALLY well and managed it! I'm really proud of him for getting through this big change.

Winning Races

When JD was three he learned how to swim. When he was five we heard about a special needs swim instructor at our local YMCA that worked with kids on the autism spectrum. JD began stroke lessons and literally took off like a fish! He has won many gold medals in Special Olympics over the years, which has been a great experience. But in late 2019, he was invited to the Athletes Without Limits Short Course Invitational where he won 4 medals racing against other kids with autism. He's a fantastic swimmer and I love watching him race. 

Riding a Bike

Like everyone else, we've been in lock down since March because of covid-19. The good news is that we finally had the extra time to help JD accomplish one of his big goals - to ride a bike without training wheels! He's tried for years and years, but the balancing piece and coordinating the rotation of his legs has always been hard for him. But after many days of back-to-back practice at home, he finally got it! 

Student Council

Last school year JD was voted as a student council classroom representative! He worked with the other representatives to do food drives, school parties and more. To run for classroom representative he had to make a speech in front of his peers! He did a fantastic job!

Distance Learning

The coronavirus sure did one thing... it made us all learn how to work remotely and that included the kids! I was really surprised by how well JD did with the transition to distance learning earlier this spring. With a lot of help and patience, he learned how to check his email, participate in Zoom meetings, complete and submit documents using Google Drive, and keep track of his daily calendar! I called him "My Little Coworker" because we'd sit across from each other at the kitchen table everyday.  He didn't love it, but he made it through the end of the school year! I thought it was probably one of the best learning experiences he's had so far because he's never worked on a computer that much before!

Loving Himself

I think the biggest accomplishment JD has made over the past year has been learning to love himself and accept his autism. He used to cry a lot about wanting to "be normal" like his siblings. But I feel like he's really embraced his individuality and is starting to see that his autism is just one piece of who he is. It doesn't define him. He works so hard to accomplish his goals and I think succeeding has really helped his self esteem. He still has tough days - don't get me wrong - but I would say that he's happier than he's ever been and that makes me happier for him!

What No One Tells You About Having a Child with Autism...

 

I remember the day JD was diagnosed with autism. It was his two-year well check and he was hiding under a chair at the doctor's office. He was non-verbal, still couldn't walk independently, and had pretty severe behavior issues. We had just moved across town so we had switched pediatricians and this was the first time the doctor had ever met JD. His old pediatrician kept telling us that "some kids just take longer to develop", but this doctor recognized it from the start and I'm thankful that he did because it gave us the much-needed direction to get JD on a positive path. 

Fast forward a decade and we're still on that path! We have all learned so much over the years and I can honestly say there was a lot that no one told me when he was diagnosed that would have helped me feel better. So if you're new to the autism journey I want to share these tidbits with you!

1. Life gets easier (then harder), then easier again.

When JD was little, autism was a HUGE struggle. We spent hours every day in therapy - speech, occupational, behavior, music, etc. My life was completely dedicated to helping him grow in every way. As the years progressed, things got much easier. He made huge progress and his communication skills improved dramatically, his behaviors decreased, and his happiness increased. But autism is a life-long journey. It's not a straight line of progression. While you're working on one area, another area may lag behind and that's perfectly ok. As much as we want growth in all areas at the same time, sometimes that's just not possible. Be happy with the growth your child is making, and don't stress too much about the areas where they are currently behind. Once they master a new skill, then start working on that area. Remember - it's a marathon, not a sprint. It will all come in time. That brings me to my next point.

2. Throw out the milestone timelines.

JD learned how to ride a bike independently only a few months ago - he is 12. Yes, most kids learn this skill when they are 4 or 5, but it took him much longer. But he kept trying and trying and he finally accomplished it! Give your child the space and time to reach their goals. Kids on the spectrum do not follow the "typical" milestone timelines and that is just fine! They accomplish things when they are ready, and I promise you, you'll be so excited when they do. Just keep trying and don't give up hope!

3. Study your child!

If you really want to connect with your autistic child, don't try to force them to be typical - learn to connect with them through their world. This means you have to learn what it's like to have autism. I constantly read about autism because I want to understand my son like no one else can. But the best way to do this is by listening to your child. Feelings are expressed by much more than words. Look at their behavior, their emotions, their reactions to situations. Try to put yourself in their shoes and understand what it's like from their point of view. I'm fortunate because JD has language and we have worked really hard over the years to express his feelings. When he is overwhelmed he comes to me and we talk about it. I learn more about autism from him than from any book or doctor. The best part is that he feels that he's not alone. He knows I am right there with him on this journey.

4. Your patience level will expand exponentially. 

I have never been a patient person but over the years I have learned to keep my cool during even the most difficult moments. Autism will teach you many things, and patience is one of them. You will see that your child has BIG emotions, and expressing them can be very difficult. But if you keep calm during their storms, it makes it much easier on everyone. 

5. People WANT to help - they aren't judging.

When JD was little and we would go out to eat or go shopping, I always felt like all eyes were on us. And guess what - they probably were. But I always felt like we were being judged by others. Maybe some people felt that way, but what I've realized over the years is that most people just want to help or they want to learn. Autism awareness has come SO far over the last decade and that is amazing. When I tell people that JD is on the spectrum, they ask me questions to learn more about him. JD has many neurotypical friends now and even they want to help in any way possible. Not because they know he needs help - but because they care about his well being. I appreciate that so much. It's not just a positive experience for JD, but also for the person helping him. 

6. Don't stress too much about the future and be flexible. 

This is one thing I have to tell myself ALL the time. I am a Virgo, so I'm a planner. I like making a plan and having it fall perfectly into place! Well autism definitely makes that a little more difficult because what your child may need this year may completely change next year and you have to learn to roll with it. I know future planning is important because independence is always our goal, but I try to focus more on the here and now and appreciate the things he's succeeding in.  Right now JD is doing an amazing job in executive functioning. (If you don't know what that is, don't worry you will eventually!) He's learning to organize his school work, his homework, his schedules, etc. I'm so proud of him. He's become so much more flexible - again that is huge. The other day he made it through 2.5 hours of "Meet the Teacher" (we have 3 kids so it takes a while). In past years he would have melted down crying, wanting to leave. But this year he was as patient as can be. I'm focusing on there here and now and recognizing that that's a big win!

7. Being "normal" is overrated. 

I used to struggle with wanting to have a "normal" life - one where we weren't going to therapy sessions or doing IEPs; one where I wasn't worried all the time about how JD might offend some complete stranger with his brutal honesty. But I've learned that normal - whatever that is - is overrated. I can't imagine JD not having autism. It's who he is and I love it. Yes, it can make things a little more difficult, but his personality is so unique. He makes me laugh like no one else can. He an I have such a special relationship and I wouldn't give it up for anything. 

 

7th Grade Begins!

 

Yesterday was an exciting day - we went back to school after 5 months at home thanks to the coronavirus. The kids were so excited to see their friends again. I was really impressed by how well JD did during the time off. He likes his routines a LOT, so having everything up in the air for so long was a little nerve wracking. But yesterday went off without a hitch - he started 7th grade with a big smile! I'm so proud of this boy, he had a great day!

The Written Word

As a professional writer, sometimes I take for granted the way that words just come naturally to my mind. I've always loved writing since I was very young and even to this day it's something I do daily. One thing that I learned very early on in our autism journey was that expressive language is very difficult for people on the spectrum. They have the feelings and the thoughts but the words to express those things aren't easy to communicate to others. I can only imagine how that must feel because it's hard enough feeling stressed or upset, but not being able to explain those feelings to others adds an additional element of stress. Because of this issue, I think a lot of people on the autism spectrum just learn to bottle up their feelings - it's too hard for them to try to share them.

For the most part, JD is quite a happy kid. He's very social and funny. But we're moving into those fun pre-teen years and I know that he's feeling a lot of changes in his moods. Some days he's very grumpy or angry. I've always encouraged him to write down his feelings when he's upset because it seems to help him get those feeling across. Sometimes he'll go to his room and write and then bring it to me to read. I love that he practices this skill. I'll read it and then we'll talk about it and I can tell he feels much better in the end, like we all normally do once we talk about our feelings.

The other night he wrote me this letter to explain some of the anger inside that he feels. It can be hard to see that he struggles with such intense feelings, but as an emotional person myself, I completely understand. I know he doesn't always feel this way, but when he does I'm glad that he has found a way to share it with me. After he read it, he asked if I could share it on Facebook for all of my friends to read which I thought was really sweet. He wants people to understand him and what his autism feels like and he knows I have friends who read my stories about him online. I explain to him that sharing our stories about autism helps people understand it better so they can appreciate people who aren't considered "neurotypical" (whatever that means!). It also helps other families of children with autism think of ways to help their kids with the same issues.

So he's my post sharing his letter to me about his anger. Don't worry - it has passed and he's back to his happy JD self again, talking about his favorite subjects like video games. I love this boy with all of my heart and I am so proud of him and the strong and talented young man he's becoming. The autism journey is not easy by any means, no matter where someone lands on the spectrum, but living or befriending someone with autism will change your life in a positive way. It helps you to look for the good in even the hardest moments. Without the challenges there wouldn't be the successes. JD reminds me of that daily and I'm thankful for that.

We're at the Half Way Mark!

Yesterday was JD's first day of 6th grade. Where has time gone? I made this picture collage of his first days of school since he started VPK when he was almost four. I vividly remember taking that photo of him in his classroom - he was so nervous - I was so nervous! Those were REALLY hard days. Developmentally and academically he was so behind. He had really difficult behavior problems and limited communication skills. I wish I knew then what I knew now.

Fast forward to 6th grade and we are light years ahead. JD is a math whiz. He also loves writing creative stories and drawing. He at grade level on most subjects except reading comprehension, but that's mainly a matter of the topic of the story and whether or not he's interested in learning about it!

I remember when he was first diagnosed scouring the interest looking for blogs or videos from parents with kids who had autism to get an idea of what the future for JD looked like. There wasn't a lot there though - usually people would blog or take videos and then eventually there posts would go away as time went on. I get it - life gets in the way and you get busy. But I don't want to be one of those parents who only focused on the journey in the beginning because it DOES get easier. At least for us it did. And if that inspires one other parent out there whose child just got diagnosed then it's worth it!

If I could say anything it would be: your child will make progress. It may not be as quickly as you'd like, or as much as you'd hope, but if you're working with them and providing as much support at home and school as you can, they WILL grow. And you'll be surprised - they'll probably exceed all of your expectations so keep them high! Don't worry too much about the future. Focus on the right now. (I say that in hindsight because I constantly worried about the future when JD was little!) I still worry, but not nearly as much. I know he will continue to grow and become more independent.

So we're half way to 12th grade. I don't know how it happened so quickly. Like they always say, the days go slowly but the years go by fast. Next thing I know he'll be a senior and (hopefully!) looking at higher level education!

Here's to those of you out there who are just starting your journey. Don't get discouraged. If you fall down, fight to get back up. Listen to your gut. You know your child better than anyone. Their needs will change every year. What works great now might not work then and vice versa. Just keep moving forward and loving your child because that's the best therapy of all!

Standing Out or Outstanding?

My kids are at that prime age where "fitting in" is of utmost importance. When you're growing up, no one wants to be the person that stands out. Do what the group does, say what the group says, wear what the the group wears... that's the safe bet. Kids with autism are no different and I've heard JD tell me many times that he feels like he has no friends even though I know that's not the case. But it's extremely hard for him to blend in with the crowd because of his quirks. His conversations are typically one-sided (based on his topic of interest/obsession), his bluntness can be taken as rude, and his difficulty understanding and using humor makes for some interesting jokes! But what I've tried to tell him time and time again is, "Why fit in when you were born to stand out?" (Thank you Dr. Seuss for these wise words!) Being different is awesome, it's what makes you YOU. Standing out is really outstanding when you think of it. Of course convincing a 10-year-old of this fact is easier said than done. Even as adults we all struggle with this desire to fit in with the crowd but God made each of us different for a reason and that's because diversity is beautiful - even neurodiversity! Everyone brings something important to the table.

When JD was younger and first diagnosed with autism we thought a lot about the things he couldn't do and worked very hard to make him as "typical" as possible. Even to this day I think I have a tendency to do this - of course the intention is to help him become as independent as possible. But some days I have to remind myself embrace his differences and the gifts he's been given and focus on his abilities rather than his disabilities. He's so creative and can build beautiful creations with Legos or in Minecraft that I could never dream of making. He genuinely cares about people and is the first to offer me a hug and kiss when I've had a bad day.  He's funny and makes me laugh and some of the things that come out of his mouth are priceless. I really should keep a journal of them. But if my focus is always to make him "normal" (whatever the heck that is?) then I miss out on those things that make him special.

So as the years go on, my mindset as an autism mom has really changed - love and embrace the child that he is, not who I think he should be. Never stop working for independence, but don't trade in the uniqueness just to be accepted. And of course, continue to love unconditionally as we all want to be loved. :)