DeCoste Family | Antigonish, NS | Twig Hill Photography
This beautiful Spectrum Inspired beach session was kindly donated by Erin of Twig Hill Photography, Thank you Erin for volunteering your time to document this wonderful family and a snippet of their day touched by Autism for us.
This is Paxton and his story. Grab yourself a cuppa and put your feet up, and join me in reading the story that Paxtons mum Kaitlin so graciously shares with us below.
“This is a blog post from almost 2 years ago, this was me at my most raw state. We were just beginning our intense year of therapy and I was so terrified of all the unknowns.
As I sit here, just 38 minutes into my son’s 4th birthday, I can’t help but think about how lucky we are to have our boy. Right before my eyes, he is growing from a toddler to a little boy and I really can’t believe we are already here. I can’t get enough of his big hugs, that piercing smile, watching him play with his baby brother and those night time snuggles while he holds onto my ear ever so gently. He makes me feel so safe, loved and I couldn’t imagine a single day without him by my side.
Although we are cerebrating Paxton’s 4th Birthday this week, we are also celebrating 1 Year since his Autism Diagnosis. Yes, you heard me, we are celebrating!! Looking back, that day & the last year have really shaped Paxton into the little boy that he is…
The day Pax was diagnosed was a tough day. Graham and I both went into the appointment very positive and really believing that he did not have Autism. When the doctor’s shared the results of his assessment with us, we were devastated. I remember feeling so relieved that Graham was with me, but I couldn’t even look up at him in fear of my heart breaking more. I remember leaving the appointment around 2:00 and both of us wanting to go get Paxton from daycare right away, just to be with him. We cried together, and had a nap. It was all exhausting.
The weeks that followed were filled with a lot of appointments, workshops, information & paperwork. In those weeks, I grieved so many of the expectations I had for Paxton’s future. Trying to picture my son growing up & playing hockey with his best friends was really hard when you had professionals telling you that the chances of Paxton making a lot of good friends was low. Trying to picture him standing at the top of the isle waiting for his beautiful bride was extremely painful when we had doctors telling us that people on the spectrum can have trouble building relationships. And trying to picture Paxton with a family of his own one day was really hard because they told us that some people on the spectrum will never live independently. I was extremely overwhelmed with all the unknowns. Pax was still non verbal and becoming very upset when he couldn’t communicate… It terrified me that he would be fighting that battle his whole life. My heart was broken for my son. Looking back, I wish I knew what was ahead of us that year & how amazing this next step in Paxton’s life would be.
Pax was diagnosed in the summer which is a very busy time for early childhood education, speech, hearing & occupational therapy. We weren’t able to get him started on those therapies until the Fall and it was at that very first speech appointment, Paxton was playing a game and said the word ‘Roll’ about 10 times. I cried, a lot. My eyes opened up and I seen all of his potential right there. In that moment, I decided that I had enough of being sad, of being scared and of being quiet. I decided to become an advocate for my son.
Over the last year, we have got to know our little Pax just a little better. We have grown to understand him for exactly who he is in this moment. We have embraced every therapy that has been thrown our way over the last year, and although we always wish for more of it, we can’t help but feel so thankful for the ones we do have. They have given Paxton the tools he needs to express himself and it gives him the opportunity to be his very best self… to be happy. Our new routine of therapy and daycare really works for us. We have celebrated each word, every eye contact, every little milestone. He has caught on quickly to some things like his visual schedules, new words, putting sentences together, being gentle and social skills .. but other things are not coming as quickly. We are still working on that sookie, holding hands & walking in public places, standing in line, being in crowded places like the grocery store, bedtime, potty training and the words ‘I love you.’ At this point, Pax has said ‘I love you’ about 5 times in his whole life. He is pretty good to repeat any words we throw at him these days, but this phrase is a little harder for him. When we tell him we love him, he always responds with a kiss. Sometimes he will give an extra big hug. And then once in a while, he will look you right in the eyes for a few beautiful seconds and finish with his amazing smile. That is my favorite response because I can feel him saying it back with his eye contact and its really such a powerful moment. I think Pax will be able to say it back to us eventually, but I will wait as patiently as I can until he is ready.
I know I’m not the perfect mom, I know not everyone agrees with my decisions as a parent and that’s okay. We defiantly aren’t the cookie cutter of families. We do things a little different, but it works for us. We aren’t as strict as some parents but we aren’t as lenient as others. We are our own kind of family and I really couldn’t picture Paxton growing up in any other situation. He fits perfect in our crazy life and we would never have it any other way. Graham is the best partner I could ever ask for in life. He took Paxton’s diagnosis hard, but it didn’t stop him from being the best Dad he could be. He has worked so hard to learn about Autsim and to guide Paxton in the right directions. He is a hands on Dad, super proud and so in love with that boy. He is there for me when I need advice, help or if I just need to escape for a little. I am really, really lucky to have him. We are really positive about Paxton’s diagnosis and are prepared for any challenges that may be thrown our way. Life didn’t go as we expected but we were certainly given more than we could of dreamed of, Paxton is more special than either of us could of ever imagined.
I never want people to look at Paxton and feel bad for him, I want them to look at him and see how amazing he is and how hard he has worked. If you are ever trying to communicate with Paxton, he really loves it when you get down to his level and speak directly towards him. If you are meeting him for the first time, tell him your name.. he likes learning names. He may respond, he may not, but if you give him the chance he will hear you and respond however he feels most comfortable in that moment. Please, be patient with him and give him the time he needs… he really does love people, and deserves the chance to be treated just like everyone else. We absolutely do not blame all of Paxton’s meltdowns on Autism, he is a normal four year old boy who can get upset when things don’t go his way. But then, there are times when he is overwhelmed by too much sensory information, too much change and not able to communicate exactly what he wants. Time like these can be upsetting because he can get really frustrated and it’s extremely hard when I can’t calm him down right away. When he struggles, I struggle. When he hurts, I hurt. When he is feeling overwhelmed by the world, I can’t help but feel the same. But what I can do is try, with all my might to figure out what he needs in that moment to calm down and return to a happy state of mind. I will be there, always, to help him the best I can to get through those times.
Pax is my hero. He has completely changed me and the way I view life. Life is extremely busy for us, but at the same time.. it’s never been more simple. We chose the simple life, one filled with love, fun and being true to ourselves. I wish more than anything that we could afford to give our kids everything they wanted, everything they needed… but the reality is that we can’t. So instead, we chose to be happy for everything we do have and to make the best of it. To be thankful for those little arms that wrap around us everyday & try not to worry much about the rest. Pax is happy, so so happy. I feel the most happy when I’m sitting & watching Paxton & Bodhi play together. Bo is finally starting to get old enough to play with Pax, and man… it’s the best. Pax knew from the moment he met Bodhi that he was someone special, he couldn’t talk yet but would be so gentle and loving toward him. Now, they are turning into the best of friends and I couldn’t be more thankful for Bodhi. He came into our lives at a really busy time, but it was meant to be. They are meant to grow up together, to learn from each other to support one another.
Although, I couldn’t be more proud of how far Pax has come… there will always be that ball in the pit of my stomach reminding me that he will always be a few steps behind his peers. He will go from kindergarten, to junior high and then to high school and my mind is always wondering what life will look like then. As a toddler, Pax can easily be mistaken for a child having a temper tantrum. But when he gets older and those actions are no longer acceptable for his age, I worry about him being different and feeling alone. I try to not touch these feelings, they’re always there in the back of my mind but I try my best to not touch them. I’ll leave them there in hopes that I won’t have to worry about it when the times comes. Because, who wouldn’t want to be friends with my baby? Any child would be lucky to. But being his Momma, it’s my job to worry. Sure, there is the odd day that I feel sad when I see another 4 year old out riding his bike, getting ready for preschool or having a conversation with his Mom. Those days are bound to happen but for now, I’m just going to move forward as an Autism Mom, be super positive and take it one day at a time.
Well.. that was 2 years ago. And this is today. I am so proud to say that after just ONE intense year of therapy, Paxton has come so unbelievably far. When we started the program, Pax could hardly speak. We couldn't take him to organized children's events or to the mall or grocery store. We never went out to eat or even sat at our own kitchen table to eat. Pax wouldn't try new foods or sleep by himself at night. We couldn't take him for walks without having a constraint on him or else he would just run. We were terrified, all the time. Watching him play with other kids was so stressful because he was aggressive & really couldn't share. It's really hard for me to think back at that time when I wrote this blog post because I've kind of blocked it all out. And sometimes I feel awful for it because our life does feel different now than it did back then. I feel guilty sometimes that our son has come so far, when others who are higher on the spectrum just can't. But then, sometimes I still get angry that he spent his last year as a toddler in an intense therapy program. But, this is out truth, our story, and where we are right now just feels right. After an intense year of therapy, our entire team was extremely proud of Paxton. He is now verbal, social, loving, fun, rested and understood. And most importantly, he is STILL PAX!! We decided to enroll him in school a year earlier than planned. He had adapted so well to his new routine of daycare so we really thought it was important. Now, being his main supporter the year prior to this, it was extremely hard for me to let go, but I did. He started Grade Primary last year, without an aid, and he just SOARED!! I'm talking BIRTHDAY PARTY INVITES, COMING HOME WITH FUNNY STORIES (I can't even tell you how many times we were told as parents, that he would never be able to share his day with us), AMAZING ARTWORK & ALL THE THINGS A MOM OF A GRADE PRIMARY STUDENT DREAMS OF!!! Now, don't get me wrong.. our Pax still has his moments and he still struggles in social situations once in a while.... but Pax has learned how to push through those, he's practiced over and over again and he is smart. I am so incredibly grateful for the team of women who helped coach our family through that time, they gave Pax the gift of his true self, doesn't everyone deserve that? I'm a proud Autism Mom and hope you loved our story.”