Maybe your special needs child just needs you

I hold him close in the “hug rock” position and pat his back while the lullaby music on Pandora plays.

Heaven sent
These wings were meant
To prove once more
That love is the key
Love is the key

It’s the end of the day, and today was peaceful. The four days before that – not so much.

I don’t know why. But this just happens. Things will be going well and we will be seeing progress and then–BAM out of nowhere comes a stream of bad days that hits with a vengeance and wreck us over and over. The oppositional and defiant behavior escalates to a new level. We fight from son up to son down. And all. the. screaming.

We all lost it so many times.

And when this happens, every time it happens, I don my hats. The researcher hat. The advocacy hat. The I’m-sure-there’s-something-else-we-could-be-doing-for-him-we-just-haven’t-found-it-yet hat.

And my search history ends up looking something like this:

“in home” behavioral therapy winston salem
constipation meanness sensory processing disorder
chapter books for good behavior
explosive child ross greene
why is my adhd child so mean
why is my adhd child so angry
hope for fathers of adhd children

I start questioning everything. And by everything I mean EVERYTHING. I question the medication…how often? how much? too much? not enough?

I question the therapies and therapists. I send her a long message from my smartphone on the way home from an outing.

I schedule another follow-up with the psychiatrist.

I question the diagnosis.

The desperation for relief, along with coming down off of emotionally disturbed episodes, whips me up into a sort of panicked frenzy.

On the last day of school before break, I was Googling other school options within the district, because for a split second I thought about moving him to a different school for the rest of this year – because surely he could be getting more help than he is. It was 4pm on a Friday afternoon when everyone was getting ready for Christmas, and I was in tears because I was so overwhelmed so I was setting up tours at schools for January because I felt like I had to DO SOMETHING.

Last night, after an epic meltdown (on the part of all involved), there I was with my computer again – telling my husband, “We need more help…” when he told me to get off of the computer, go into the bathroom, and spend time with our son who was in the tub.

“But…but…”

“No. Right now he doesn’t need more help. He just needs you.“

I was reminded of a blog post by Sarah Mae that has stuck with me throughout the years entitled, “Maybe Your Two-Year Old Just Needs You.” It’s about her strong-willed daughter as a toddler who just needed some extra attention at bed time. And while Ezra isn’t a toddler, in many ways he has the emotional regulation skills of one.

I told my best friend this morning about this – about how I spend so much time looking for the answers and help that we so desperately need that I forget how much he desperately needs his mother.

We have a team of a Licensed Marriage and Family Therapist for Russ and I; a Licensed Professional Counselor for myself; a Licensed Professional Counselor, two occupational therapists, a psychiatrist, and a special education team for Ezra. Maybe it’s not enough and maybe we still need more help, but maybe we just need to let them do their jobs and work the plan and remember that progress is slow and there WILL be setbacks.

I am advocate. I am chauffeur. I am therapy observer and implementer. I am medication administrator. I am appointment scheduler and email/phone Point of Contact. I am behavior manager. I am mental health caregiver.

But maybe more than he needs all of those things, he just needs me to be his mom.

Along with my vision for growth this year, the word cultivate keeps coming to my mind in regard to my relationship with him.

I have really been struggling with my negative emotions toward him. There is a grieving process that special needs parents go through when they realize just how different life is than what they might have envisioned. Having Little Brother has brought back so many memories to those early days of Ezra’s life. Those emotions are really heightened right now – and often I find myself feeling very complex things that I can’t always name. I hold this sweet baby in my arms and kiss his cheeks just as I did with Ezra, and I’m filled with such enormous love, nostalgia, grief, terror, doubt – about both of my boys and what they will become – all at the same time.

There is a discrepancy in the emotions I had toward him as a baby (the same emotions I have toward Little Brother) and the emotions I feel for him now. I want – no, desperately need – to get to a point where I can love him the way he needs to be loved.

Much as it was for my husband a few years ago, my love is depleted. Worn down. I know that loving a special needs child means a different kind of mothers love and may never look completely like what I envision. But I know that I need to fight my way back to a better place with him.

I don’t know what cultivating love for a difficult child looks like. But I know when you cultivate anything, it’s messy. There are seeds that you must plant that you will not see come to fruition – you must cultivate with patience. There are weeds to take up – weeds of doubt, fear, frustration, disappointment, anger, and hurt. 

And there’s going to be crawling up and down the hallway on my hands and knees because he wants to play cars and I always tell him no.

A friend of mine said this on Facebook yesterday, and it was something I really needed to hear:

‘One of my greatest regrets as a parent is not enjoying Jackson as much as I probably could have when he was a toddler/ young elementary age.

I was so caught up in appearance and WHY he was so “high spirited”, and trying to figure out how to change that and make him “normal”, that I don’t think I stepped back to laugh at and enjoy the brilliance of who he was IN that high spirited nature.

That’s the thing when you’re doing it for the first time- if I knew back then how peaceful it would be now, instead of worrying about him turning into a juvenile delinquent, I would have looked closer at his creative, loving side earlier on.

I was so focused on how I would be judged as a parent and a wife, that I now realized I robbed myself of being the best parent and wife I actually could have been.’

Wendy Wood

So last night I went to bed, utterly defeated from the day, and yet hopeful, remembering that “every day is a new day, with no mistakes in it.”

From the moment he woke up, I tried to meet him in the chaos – walk alongside him, rather than managing him.

I tried to be pleasant, nice, and fun. I cuddled with him as he woke up, played cars with him, helped him get dressed and undressed, observed at OT instead of waiting in the waiting room because he asked me to, and rocked him for 20 minutes before bed.

Mostly, I just tried to be his Mommy.

Because maybe, just maybe, that’s what he needs the most.