These photos make me emotional. These photos represent so clearly our journey with our oldest son, Parker. Parker is bright, brilliant, intelligent, witty, funny, clever, creative, talented, artistic, sensitive and insightful. Parker is our rainbow baby, our answer to prayers after we lost our first pregnancy. Parker is so wanted, and so integral to our family. Parker made my dreams of motherhood come true. My whole life I’ve just wanted to hold Parker close to me. Let him know he is so treasured in our family. In fact, his first year of life I almost exclusively wore him in a baby wrap everywhere we went because I wanted him close. I could feel his body literally calm down when he was close to mine. Little did I just how much I would continue to hold him close to regulate his body. These photos make me emotional because they document so clearly how my physical presence helps co-regulate and calm the storms Parker feels almost daily.
I noticed Parker being different then his peers since the age of 12 months, and started trying to access professional help when he was 2. It was so hard in those early years to tell what was normal developmental behaviour (anyone hear of the terrible twos?) and what was diagnosable behaviour. All I knew is Parker struggled to regulate, handle transitions, and socialize with peers. I had many friends who had strong willed toddlers/preschoolers who went to school and they really settled down and just figured it out. My son did NOT settle down with school; in fact it amplified his behaviours as I think the school setting was way too stimulating for him and he struggles with regulation and he struggles with social interactions. I have started accessing supports since he was 3 years old, including CASA mental health, trying to get him into 100 voices but being denied, getting daycare observation reports done, applying for FSCD, a psycho Ed assessment, counselling, play therapy, disability tax credit, school behaviour plans, IPPs, bloodwork from the family doctor, treatment plans, positive parenting classes, professional conferences with leading edge researchers in the field of child development, 1:1 parent coaching, personal counselling, and more. This has been a whirlwind to navigate I found it so hard to get any sort of reliable supports until Parker entered the school system.
Things escalated in school because of the significant triggers Parker faces in school (social interactions, group play, sensory overload, lots of transitions). Parker does phenomenal 1:1, and typically prefers adult company or being with older kids. This may be due to his high IQ but he struggles relating socially to his peers. He struggles with free play. He struggles building friendships. Things have been ultra exhausting as he’s gotten older as the behaviours become more difficult to manage. Parker has been kicked out of daycares, kicked out of summer camps, and has been sent home early from school because of extreme melt downs. We are so blessed to have a school team who is working so hard with us to try to make Parkers school experience more successful. Ive volunteered in the classroom and every time I do a wave of grief crashes over me as I see how much Parker struggles to navigate the classroom when his peers seem to go about their routine so seamlessly.
This has been the hardest thing I’ve gone through in my life. It’s the endurance piece. Going through it every day with no relief even when you’re trying to implement ALL of these strategies. It is so hard. The judgement from others, the isolation because taking him out of the house is too anxiety provoking because you don’t know when his next melt down will be. Seeing how he struggles more significantly then their peers. It is HARD. There is a NORMAL level of disregulatation among kids and there is a NOT normal level. Parkers assessments have revealed he has ADHD-Impulsive, ODD, giftedness, and possible mood disorders. These diagnoses came at age 6, as they don’t like diagnosing at such a young age. Almost every aspect of Parkers daily life (in a social context) was impacted. School, church, play dates, daycare, summer camps, etc. Tom and I really align with Dr. Ross Greenes ideology that “kids do well if they can.” I believe Parker wants to do well. I see him try so hard, and he has made so much progress that I often remind myself to celebrate. The thing I have to remember when there is a diagnosable condition for these kids their brains are LITERALLY wired differently. They lack the ability to make the same decisions as their peers when their brain anatomy and brain chemistry is different. They need extra support. Families need extra support. Often times I feel I have no answers, and at the end of the day my greatest superpower as a mom is to love him through this. To carry him through this. To hold him in my arms and remind him he is safe and he is loved. There have been so many times I hold him in my arms like I am in these photos and I am crying with him. We hold each other and cry until he can calm down. I’ve had to do this at church, at the grocery store, at indoor playgrounds, at birthday parties, at school. I’ve been on the floor holding this sweet boy until I can physically feel his body relax as he calms down in my arms.
I have faced the judgement of many. I have so many instances where others have said hurtful things to me, and to Parker. When I was pregnant with Hudson I took Parker to Costco to go grocery shopping. He was having a huge meltdown and threw all the kiwi in our cart on the floor and the fruit splattered everywhere. There was an older couple that sat there and starred at me, looked down at my belly, and back up to me and said: “wow, and you’re having another one?” I left my cart in tears and stormed out of Costco with Parker, sobbing. I now do all my grocery shopping online. I also had an experience where I took Parker to an indoor playground in the winter time shortly after Hudson was born. Hudson was a newborn and I was trying to nurse him, and Parker was having a melt down with some other children in the play structure. As I sit there nursing my newborn and trying to talk to Parker to calm down, I had parents berating me telling me to get my child out of there and away from there kids. Not one person offered to help me with my newborn, or to retrieve Parker. Freshly post partum, and sore, I began climbing up the play place with a brand new baby in my arms and a toddler who is having a major melt down. I also left that place in tears never wanting to leave my house again because it’s simply too hard. I’ve also had parents from Parkers school question my parenting, and I’ve had well meaning church members suggest I stop working so I can focus on Parkers needs more, and I’ve also had church members say directly in front of Parker how much easier and more pleasant Hudson is. As I sit in the church hallways in tears trying to regulate my son to go to class and sing church songs with his peers.
This path is lonely. This path is filled with dark days. This path is also filled with resilience and hope. I’m not sure why I’m sharing all of this honestly, besides the fact that I have been brainstorming ways to help Parker through this. I stumbled across these photos last night and they brought me to tears. Something that has been so empowering has been connecting with other families who are going through something similar. Learning from them, hearing of their experiences. It has made me feel less alone, and it’s also provided me with new ideas from others who have walked this path before me.
If anything, I hope that by me sharing this it helps other families who are on this journey. If you have a neurodiverse child who is struggling, if you are struggling, you are not alone. When they say it takes a village to raise a child, it really does. I am grateful to the village who have wrapped their arms around my family with love. There have been many who have judged me and judged my son. Our support systems and the people who extend so much grace, understanding and acceptance of Parker are the ones who help carry my family through this. From my family, to friends, to the professionals who are working with us; thank you.
My parents; also having a son with a disability; often remind me of this poem that helped them when my brother Jordan was diagnosed with Williams Syndrome. It’s called: Welcome to Holland - By Emily Perl Kingsley:
“When you’re going to have a baby, it’s like you’re planning a vacation to Italy. You’re all excited. You get a whole bunch of guidebooks, you learn a few phrases so you can get around, and then it comes time to pack your bags and head for the airport.
Only when you land, the stewardess says, “WELCOME TO HOLLAND.”
You look at one another in disbelief and shock, saying, “HOLLAND? WHAT ARE YOU TALKING ABOUT? I SIGNED UP FOR ITALY.”
But they explain that there’s been a change of plan, that you’ve landed in Holland and there you must stay.
“BUT I DON’T KNOW ANYTHING ABOUT HOLLAND!” you say. ‘I DON’T WANT TO STAY!”
But stay, you do.
You go out and buy some new guidebooks, you learn some new phrases, and you meet people you never knew existed.
The important thing is that you are not in a bad place filled with despair. You’re simply in a different place than you had planned.
It’s slower paced than Italy, less flashy than Italy, but after you’ve been there a little while and you have a chance to catch your breath, you begin to discover that Holland has windmills. Holland has tulips. Holland has Rembrandts.
But everyone else you know is busy coming and going from Italy. They’re all bragging about what a great time they had there, and for the rest of your life, you’ll say, “YES, THAT’S WHAT I HAD PLANNED.”
The pain of that will never go away.
You have to accept that pain, because the loss of that dream, the loss of that plan, is a very, very significant loss. But if you spend your life mourning the fact that you didn’t get to go to Italy, you will never be free to enjoy the very special, the very lovely things about Holland.”
There are so many very special, very lovely things about Parker. For now, I will continue to hold him in my arms until we both get settled in Holland. 
