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. :)

Always Searching for Answers

Searching - adj - thoroughly scrutinizing, especially in a disconcerting way. 

If there's one universal truth about autism moms it's that they are in constant search for answers or information. Today I received an email from a mom in the Czech Republic who found my blog and recognized something her son does that is similar to what JD used to do, called visual stimming. I wrote a post about it long ago in 2010. It was one of the first signs of JD's autism, but I had no idea what it was. I just knew that he would play with cars in a very specific way - rolling them past his eyes very closely while he laid on the ground, played at a table, or waved them by his face as he sat in the high chair. I did the exact same thing she did - search the internet for videos or blogs that might be able to provide some explanation. 

That's your life when your child is first diagnosed with autism - searching for answers. I remember spending hours at the computer in the middle of the night watching YouTube videos searching for mannerisms in other autistic children that looked like JD. I was thankful that the videos were there because they would provide some evidence to support what I was telling his doctors, but at the same time tears would roll from my eyes because the evidence is hard to accept. What amazes me though is that this isn't the first time I've received messages from other autism moms searching for help; I actually get a few messages a year from people all over the country. It never even occurred to me when I started writing about JD, I was also providing insight into our experiences and autistic world that other parents could relate to. They are even so sweet as to ask about the progress of JD, since as you can see, I don't post nearly as often as I did when he was little!

The good thing is that it's a miracle to be able to say that things have gotten easier, or maybe autism is just the norm for us now. I was so worried when he was diagnosed about his future and his life - you have no idea what to expect. But what you don't realize at the time is that you don't change the autism, autism changes you. JD's autism has made me a better person. It opened my eyes up to a world outside of my bubble which consisted of mostly the neurotypical and non-disabled. It gave me such empathy for others, it forced me to learn patience I never thought I could have, and stretched my heart to encompass not only wanting to help my son with special needs, but so many others. But that's exactly  what autism parents do - we become an unwavering support system for each other, we become tour guides for the parents whose children are just being diagnosed, and we become stronger as each day passes and each small achievement is made. 

I'm thankful that this parent reached out to me today. It made me stop and think about JD's journey and progress and be thankful for how far he's come. I think a great resolution for 2018 is to get back into my blogging because autism doesn't stop when your child turns 3 or 4. It's a lifetime journey and I'm happy to be the person who documents it!

(Me and JD from Christmas - he's almost 10 years old now and in 4th grade. He's now considered "high-functioning" and is academically on grade level. His challenges now are mostly social and emotional, but we are lucky that he has a wonderful group of friends and a fantastic school to support him!)

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Limitless!!!

The other day I opened my Facebook app and was greeted with a memory from January of 2012. It was a blog post I wrote called, "JD's Top 10 Accomplishments in 2011." Reading it brought back so many memories, good and bad. But what it really did was remind me just how thankful I am that I started this blog so long ago. It's given me the chance to document his autism journey and allows me to look back and see just how far we've come. I'm not nearly as good about blogging regularly as I was when this just started, but I actually see that as a good thing. When it began in 2010 I used writing to deal with so many issues we were dealing with and now things are easier and that need just isn't that intense. But I still think it's important to do it because I know that in years to come I will look back on this day and be amazed by his progress! And since it's January, 5 years later, I thought it would be the perfect time to list JD's Top 5 Accomplishments for 2016!

Friends and Someone Special

The first few years after JD's diagnosis was filled with therapy to learn motor skills, speech and sensory regulation. We started with Playtime and worked our way through OT, Speech, ABA and more. He still gets weekly therapy for OT and Speech but something I've learned about autism is that at some point the focus changes. Now it's more of a social skills problem. We are so fortunate in that JD caught up on almost all of his developmental milestones through therapy, but sometimes I think the social and emotional difficulties are even harder to deal with. One thing that JD has made huge strides in is friendship. For parents of neurotypical kids this is usually a no-brainer, it's just a skill they are born with. But when your child has autism it's a whole new world. JD's obsessive interests (can anyone say Legos, Mario or Minecraft?!) that can make him stand out in a crowd of fellow 3rd graders. He's blunt, or honest if you'd like to use the PC term. I can't tell you how many times a day he tells me he loves me because I'm "squishy" lol. I never know what's going to come out of his mouth when he talks to someone. It can be really great, or really horrible. But we've learned to laugh most of the time because sometimes we all wish we could be so honest! But JD has made some really good friends in the past two years and he's very attached to them. Some of them are friends from our time in Sarasota, and some are from Orlando. They understand JD and accept him for who he is, challenges and all. Some of his friends are also on the autism spectrum and others are not. Just a few weeks ago he was invited to his friend Asher's birthday! It really makes me happy when I see him texting his friends or talking to them on FaceTime. Thank goodness for technology! But one person is special, his very best friend. Her name is Adeline and her and JD have a connection like no other. She lives back in Sarasota and it's been hard for him to be away from her, but we try to see her every single month. He talks about her almost daily. He tells me he loves her because she "treats him like a normal person." Addie also has some developmental delays, but when they are together they are a perfect pair. She laughs at his jokes and he holds her hand. He talks about how one day they will get married at Legoland and they will live with us forever. I tell him nothing on earth would make me happier. Seeing him connect with Addie, and his friends, is the best gift I could ever ask for!





Academics

It's hard to believe that JD's in 3rd grade now. Three days a week he's in a special-needs classroom and two days a week he's in a typical classroom with an aide. He makes amazing grades, never anything less than a B on his report card and loves to come home to quiz me on math facts, grammar and science. He wants to be a scientist when he grows up, or a video game designer.... he hasn't narrowed it down yet but I'm sure he'll accomplish whatever he sets his mind on. He wants to work at GameStop when he goes to high school and most of the time is pretty responsible. He's an amazing speller, which is funny because I'm horrible at spelling. I'm proud of him because he keeps pushing onward. School is getting harder and he's dog tired at the end of the day but he keeps on keeping on!



Shoes, Buttons, Self Care

Another area that JD has made progress in is self-care and independence. He just learned how to tie his shoes! That was a BIG deal for us and I'm thankful for his OT at school who taught him! He can get himself dressed, button shirts and zip up jackets, brush his teeth (although not well enough because he's had 10 cavities) and wash his own hair. He's starting to do chores around the house like folding laundry, and I say folding in a very loose term! He unloads the dishwasher for me and has even learned how to make himself some foods. Again, that's probably something most parents don't think about but it's a big deal to us. Our entire goal as his parents is to make him as independent as possible.



Sports

I can't believe I almost forgot this one! Last year JD played on his first sports team - soccer, and he participated and dominated in Special Olympics swimming! This was another dream to see come true. We learned that he's an amazing swimmer and we'll start up again in May. He won two first place ribbons in the Central Florida games and we're hoping this summer he'll make it to the State games. He has such drive and passion for swimming and when he's in the water it's like he's in his element. I love watching him swim and I hope he keeps it up for years to come!








Masterbuilder

Earlier I mentioned one of JD's obsessions - Legos. Our house is covered in Legos and I have a love/hate relationship with them. I currently have probably 8-10 Lego sets sitting on my kitchen counter and kitchen table. JD builds them and plays with them every day. I love them because of a few reasons: 1. because he can build the sets by himself now, which is pretty difficult, and 2. when he plays with them his imagination is in full-force. He has all sorts of battles with his Lego figurines and normally takes at a rubbermaid container of at least 10 of them everywhere we go. The hate part is picking them up on a daily basis. You think I'd give us by now and just leave them all over the table and floor, but I can't. My OCD kicks in and I have to put them away. They say the definition of insanity is doing the same thing over and over again knowing the result will always be the same. That's me with Legos!

 There's a quick recap of just a few of the things JD's accomplished in the last year! I love him so much I could burst even when there are times where I think I can't take another second of listening him talk about whatever topic he's into that week. He makes me so proud in so many ways. These accomplishments didn't happen overnight, more like over years. That's why I liked the quote in the photo above so much - "little by little, one travels far." Keep traveling JD!