When it comes to making or breaking relationships, I always say parenting & decorating a house will test it. Just my opinion but they feel so accurate to me. Mine & Matt’s relationship has been tested in more ways than one: a major one being Jackson’s diagnosis. As a couple, you can only plan for so many things to test you & we thought Matt being in the Military was going to be one of our biggest hurdles. We took it into consideration when we decided to expand our family & knew it would be rough. However, when you get thrown a wrench out of left field about a diagnosis you really only know at face value, things must change.
By the time we received Jackson’s Autism diagnosis, we had accepted it. We had processed the shit out of it for 4 months. The time frame of 18 months when we got the initial concern to 22 months when he was officially diagnosed was a rollercoaster of emotions & thoughts but we were ready. We went from having the rug pulled from under us & COMPLETELY shook to hitting the ground running because we had no choice.
I’ve been asked a few times to talk about how Matt & I coped with Jackson’s diagnosis so this will be my attempt at that. Please keep in mind that every family reacts in different manners & at a different timeline. We also have the capabilities that other families may not [great insurance] so that helps ease some tension.
If you’ve been following along with us for a while [when we got initial concern] you know I was in denial. Matt, being the realistic realist he is, tried to convince me that something was different with J but I refused to listen. I believed he would speak when he felt he needed to & was just a late talker. I was still clinging to me having a ‘normal’ kid that would grow up & do all the ‘normal’ things kids do: the sports games, the socializing, etc. Taking J in for that evaluation was my turning point & it became crystal clear to me that EVERYTHING was going to be different. Not so different to the point that things wouldn’t be happening but more thought had to go into movements to consider Jackson’s needs. Leaving the building, I began to mourn the child I had envisioned.
Now I’ve read that when Special Needs Parents talk about mourning a kid, it gets misconstrued by those that physically lost a child. I cannot imagine that pain of the death of my kid. There just aren’t any words to compute that feeling, however, we are still mourning. Much like a miscarriage, you’ve dreamt of who this child will become, the things they’ll do & accomplish, you’ve subconsciously set goals for them, etc. To be told you’re child is alive but will have limitations is throwing out your typed up, laminated playbook that you’ve memorized cover to cover & starting with a blank sheet of paper. Not to mention, you’re writing this new playbook without any references & learning everything as it’s being presented to you.
Matt’s mourning happened more over time. He understood something was off at 18 months but I don’t believe it sunk in. He still has his emotional spells from time to time when J hits new socializing milestones. For example, when we started considering sending Jackson to preschool. Even though it’s ‘just preschool’, intermingling starts this early & kids start to feed off each other. Jackson still doesn’t respond to his name so sending him to a mainstream school [in a Special Education classroom] is a little bit of a jolt. Matt gets really nervous that J’s gonna get picked on for being different, which I’m sure is going to happen many times. But I get to be the one to tell him kids are cruel in general. They’ll pick on each other for wearing their hair in a ponytail, let alone if they do weird things.
This is a constant one. Every time we get in a comfortable groove with our life, something happens that makes us remember “hold up. We have to think this through” & I think it catches Matt off guard each time. Being a Special Needs Parents can sometimes be extremely isolating. Yeah, kids have quirks but Special Needs is something all on its own. Not every parent can relate to food aversions, sensory issues, daily care or meltdowns so it’s something that needs to be explained or even witnessed sometimes.
I’ve found joining FB Support groups to be very helpful. I don’t interact on them but seeing other parents post about their kids [both wins & losses] helps me not feel so isolated like there are other people that understand our day-to-day, sometimes even more extreme. It helps normalize all versions of Special Needs for myself so I not only become more comfortable seeing people in public, but it assists me in talking to other people about OUR life with Jackson. If I help normalize it for myself, I can do my part in normalizing it for others.
PATIENCE & GRACE
Obviously the first 2 come in time & at whatever pace they occur but this one hit me in the face & I have to practice this daily, if not hourly. As a parent of a kid with Autism, things are always changing. Hell - being a parent in general is a journey of constantly learning. But with special needs, things are different. Every single win - big or small - is earned. There is so much work that goes without being acknowledged. Simple things like sitting still long enough to lace up shoes to big things like eye contact. It’s extremely rare that anything happens with the first attempt [or 10]. When it happens, everyone celebrates. But when & if it doesn’t, you take a deep breathe & try again. & again & again & again.
“How do you keep going?” you could ask? Out of necessity. I asked a Mom friend of 5 how she gets things done & her answer, that answer, has stuck with me. We, as parents, function in these situations out of necessity because it must be done. We are their main providers. If we don’t, then how can they? Matt has ALWAYS had more patience than me. I get very frustrated extremely easily & it’s a character flaw but I’m working on it with Jackson’s help. For example: Matt will sit at the table with J & literally hold down his hand that doesn’t hold the utensil so he doesn’t use both hands. Me, on the other hand, will try to stop every other one because I just don’t want to! He’ll still eat but it just won’t be ‘proper etiquette.’ Where I shine is the catering. Not saying Matt is a cold hearted person but they know Momma is gonna hold & cuddle them [until I’m touched out] - I’m a safe haven that I’ve learned to enjoy.
BALANCING PARENTING STYLES / IT’S NOT ONE OR THE OTHER
This is something that needs to be addressed with a special needs kid or not. Compromise is NECESSARY. Because people have their own beliefs on what’s right & wrong, compromising is a difficult task. For example: Matt is a very logical, black & white kind of person, where I’m more of the emotional, let’s have a chat kind of person. We’d butted heads in the past about how we planned to parent Jackson & I made the first massive compromise by taking Jackson in to get evaluated & putting my pride aside. Since getting the diagnosis, our parenting styles have completely meshed & overlapped. Not saying our communication was shit before but now that we’re forced to talk EVERYTHING out, we cross styles constantly to meet Jackson where he is. For example: when he has his meltdowns, I can’t just hold him & “make it better” like I want to. I pull from Matt’s book & let him do his thing. & if he’s actually upset because he’s hurt forreal, Matt hold that boy all day long until he calms himself down.
If I had to offer advice, it would be to allow the other parent to have their certain styles but understand why they do what they do. It may be because that’s all they know or because a book told them. Have that conversation & be open to what could come from it.
Getting an Autism diagnosis for your kid makes you throw out whatever handbook you had. Yeah, some things could still apply but overall, girl - you’re starting from scratch. We had to face reality about a lot of things that wouldn’t apply to Jackson that you wouldn’t consider. Simple things like him relying on responsive communication [come here, sit down, bring me, etc]. Because he doesn’t have that recall capability yet, eyes needed to be on him at all times [or be in a fenced area] much like a new toddler even though he’s almost 3. We can’t just let him go in a playground or in a new environment so there’s a sense of “helicopter parenting” happening in new spaces. Also allowing him to not eat certain foods is a weird one we’re still battling because it’s almost like it’s not a choice of his to deny it. His mind & body will not allow him to ingest certain things because of their appearance so we stay ready with his 5 foods. & not forcing him to play & interact with other kids is kind of gut wrencher. You want to see your kids thrive & mingle with other kids, to have other kid friends & then you make more parent friends, blah, blah, blah. With Autism, socializing isn’t even in the initial book, let alone the library. Some people with Autism never gain the ability to socialize in their life [heart breaking] but Jackson seems to warm up to certain people if he’s around them long enough & really rocks with some parallel play.
But don’t let this defeat you! With as many styles you must leave at the curb with an diagnosis, you gain as many new ones you wouldn’t have considered. Like learning how to speak to kids about inclusivity & seeing the joy the most random things can bring a person.
Parenting a child on the spectrum is not for the faint of heart but I’ll be damned if it isn’t one of the most rewarding things I’ve ever done. Jackson’s diagnosis has helped communication within my marriage improve, I’ve educated myself, friends & family in Special Needs & he’s has shown me not everything goes to plan. This wasn’t the child we had dreamed of parenting but in a sense, he’s exactly what we needed & we wouldn’t have him any other way.
Autism does 1 of 2 things to a relationship: it will rip it apart due to stress & not focusing on the spouse OR open up your communication & bring you closer together than you ever thought was possible. I’m beyond grateful to know Matt & I are of the latter. We have our standard disagreements like any other couple but Autism will not be a wedge between us. Strangely, it’s the glue.