Different, Not Less

WE RECEIVED A DIAGNOSIS OF AUTISM SPECTRUM DISORDER [ASD] FOR JACKSON ON FRIDAY. 

Ok so diving right in, Jackson was given The Bayley Scales of Infant & Toddler Development which assess the developmental functioning of infants & young children from 1 month - 42 months of age. It measures development across 5 domains: cognitive, language, motor social-emotional & adaptive. After the test, Jackson ended up with a score of 15 months developmental age, suggesting borderline performance. There are A LOT of numbers & scoring that are in a 6 page packet Dr. Greer gave us & it makes sense to us. However, if I tried to explain it here, many would be lost a few sentences in & be done with this entire post haha. & I DON’T WANT TO LOSE YOU YET! So instead of busting out all the scores, numbers & charts, I’ll just say Jackson received a diagnosis of moderate to severe autism & that’s that.

When Dr. Greer was explaining everything to us, Matt & I were extremely relaxed. Almost relieved? She was speaking to us almost like she was ‘breaking the news to us gently’ but we were more than fine. Both of us are straight shooters so we don’t like the sugar coating. She recommended us starting Speech & OT for him & we said he’s already started. “Well you guys are on top of this!” DAMN RIGHT! Honestly, we needed this official ‘yes’ to move forward so she made it clear to us what we needed to do now.

JACKSON IS STILL JACKSON

This label is only so he can receive his therapy & assistance. One of mine & Matts biggest fears for Jackson is that people will look at us with pity & Jackson will be labeled as special or looked down on which is NOT the case. We’ve been raising him for nearly 2 years without this diagnosis. This should not & will not change the way we view him, & we’d appreciate if everyone did the same. He’s still our happy Jackson that loves ears. He’s still a kid with funny quirks, like plenty of other kids. He just learns differently & we are learning those ways to help him succeed. Even though it does explain a lot, we don’t need a reason for it. The head shaking, obvious lack of speaking, why he doesn’t look at cameras or or specific places without me singing the Addams Family theme song: this explains why. But he’s still the same sweet boy he was before the diagnosis.

HE IS YOUNG BUT THIS STILL APPLIES

Please, for the sake of not pissing me off & getting your feelings hurt, do not tell me the diagnosis is irrelevant. We understand his age & what he or doesn’t to is subject to change because he’s young but this label is required for therapy. Do not discredit the work we have put in to getting him seen or the therapists & psychologist who have seen him by trying to make us feel better. You don’t have to understand it or agree with it but you will respect it. 

Going into the appointment to get Jackson’s results, we expected to get a diagnosis. Honestly, we would have been more surprised if she hadn’t given it to us because that kind of would have left us in this weird grey area with our previous “at risk” diagnosis. But we got it & now have started his ABA therapy.  

Like I’ve said before, no one really wishes for their kid to be ASD but in this case, it answered our questions rather than brought on more. Matt & I have been ridiculously open with each other throughout this entire process. If you’ve been following along, you know I had A LOT of struggles in the beginning just taking Jackson to the initial speech evaluation indicating his delay. Like I cried in front of the woman as J wasn’t responding to things.. If you were to tell me then, 4-5 months ago, that my same son would be diagnosed with SPD [Sensory Processing Disorder] & ASD [Autism Spectrum Disorder], I would have called you crazy & then did a weird mixture of laughing & crying. Matt & I have grown exponentially these past few months with moving across the country, welcoming our 2nd son to the world & now getting this diagnosis with the additional therapy. IT IS A LOT! But through it, we’ve learned how to communicate enter & in turn, makes things easier for ourselves.

Matt still struggles with Nature vs Nurture concept though.. Like did he end getting diagnosed because he watched too much tv as a kid or was he born this way & electronics became his thing? I tell him there’s no need to search for a ”reason” why he is the way he is. We also definitely don’t need to put any additional pressure on us like it’s our fault [pretty much exactly what I did when we started this journey]. Jackson was born this way & that’s just how it is.

As of today, we have officially started his ABA therapy. We have a team of 2 therapists [1 Monday’s & Thursday’s & 1 Tuesday’s & Friday’s] with a consultant. They are 3 hour sessions first thing in the morning at our home/ So far, we’ve incorporated the dogs into the area so J is at his most comfortable & I disappear upstairs or go out for a run with Miles so I don’t distract. We’re still in the ‘getting to know each other’ phase so his programs will begin the week of Thanksgiving. I’ll be sure to do a 1 month followup of his ABA therapy here, as well as a 3 month one for Speech & OT.

Our first born son is autistic but that’s not all he is. This label will help him get the additional assistance he needs but it will also bring us some weird feelings that will surface from time to time. Same with looks & feelings from outsiders but that’s on them. We just want the best for our son & will do whatever is needed for him. All we ask is that you don’t look at him different with that “Awww..” look or with pity. We don’t need/want that pity or that energy.

Our first born son is different, not less <3