Today is a day for me. I put my “baby” on a bus and sent him for his first day of Pre-K thru the Chesapeake public school. This may not seem like a big deal to most, and some people may be questioning this as he’s been in “School” since last year, but today was different.
You see, three years and three months ago I gave birth to Ben. My instant sleeping thru the night, independent play – but high strung baby. Every well check he’d be a little behind on milestones, not motor skills but social, and the PCP questioned it, but I always had an excuse. “He’s he third child”. “I don’t have time to hold him so much so he settles himself”. “He’s had chronic ear infections, so he can’t hear very well and talk well because of that”.
Then comes August of this year. Within weeks of being at school, he begins to worsen with behaviors we’ve brushed off at home. Screaming. Hitting. Isolating. Not sleeping. Not eating. We get calls to pick him up from school. We get to school and he’s not been in class the entire day because he’s been walking the halls with the director. Then it comes – “we aren’t equipped to handle kids like him.”
I will spare you all the details, as there are many, and there are still many more to come, but after a long long road, Ben starts special education today. He rides the bus, to go to class where maybe they can help us – help him. Help “kids like him”.
Sensory processing disorder. The first diagnosis. Referrals, Speech therapy and occupational therapy referrals, neuro referrals, developmental Peds, changes in Primary Care doctors and the list goes on.
This week is a big week. Special school today, neuro eval Wednesday, speech eval Thursday. Class for Andrew and I to get more help Thursday night.
Next up – waiting list for an eval for an Autism evaluation. Autism. ……Austism. How the hell, did this happen? The new PCP (because we changed trying to find everything and every resource we can) told us she can’t officially diagnose but had no doubt he had autism. So here we go. This long long process of let downs, tears and fighting battles I don’t even know where to start with.
I’ve done it all right, right? I do everything I can for my kids. I put EVERY need and want of my own on the back burner so my kids can have the best. I vaccinate, I feed them good, no soda, do homework, take them to museums, not too much screen time, I love them. What did I do?
A lot of emotion and feelings. Anger, regret, frustration, relief. Exhaustion. Pure exhaustion. Something most people will NEVER understand.
I cry a lot. Sometimes for me and my self pity. But, a lot for him. What does this diagnosis mean for him? What will this “do” to him long term? Am I doing the right thing? Talking to the right people?
And for the record, I know very well those of you reading this who’ve gotten annoyed or talked bad about Ben when you’ve left our company. I see your looks, I know them well. I feel your judgment. As a mom, part of me wants to say “I hope you feel like an asshole now”. But as a human, I’ll say, I hope you’ll learn to be a little more understanding. I hope next time instead of isolating my kid more or passing judgment you’ll learn to love a little more openly and be a little more patient.
We have a long journey ahead and today was day one. I have felt guilty all day bc I didn’t post pictures or even take that many of him getting on the bus. I didn’t print out a “my first bus ride” picture and have him hold it. Now, not even out of day one – I already regret that my pride of admitting he needs more help, held me back from being super proud of this milestone. I didn’t want to post a picture of my excited boy dancing in the driveway when he saw the bus because I didn’t want to have to explain to the world why he is changing schools or riding a bus at 3 years old. Then, I decided – who cares? This is my son. My son who was made perfect for me. My perfectly awesome son hitting another milestone and getting on a bus and excited – and I’m so so proud of him. So here it is – here is my Benjamin button on day one – of his long journey.
Here’s to a journey we are going to rock together: where we will appreciate and rejoice in the small steps, the giant leaps, the falling down, the getting back up and never let any diagnosis define his worth and awesomeness! We love you Benjamin, and we are so proud of you.