I’ve heard that parenting a child with special needs is very rewarding. I heard it so many times when preparing to adopt Jordan that I was pretty curious by the time we got him home. What about being his mom was going to be so unusually special?
I loved him from the moment we determined to adopt him. My head told my heart that he was my son… and a fierce warrior mama rose up in me and I fought and worked to bring him home where I could protect and care for him. The day all my children were in one country, in one city, under one roof in our home was the day the world became right. And wrong, or so it seemed.
The first years were, in some ways, a progression of realizing what I’d lost because of his special needs. His special needs were beyond what I’d prepared myself for, beyond Down Syndrome. He had been shaped by years alone in a crib. Some people overcome the loss and grief that come with special needs really fast, but I guess I’m a slow learner. And so, though I was fiercely determined to be a good mama, though I cared for Jordan with tenderness, though I had him home with me, I struggled to enjoy him and I didn’t feel like I loved him. I was patient, knowing that bonding can take a long time, but my heart… hurt.
You probably don’t know what that looks like or feels like. In some clarity that comes from looking back, I’m not sure if it was not “loving” him or if I felt a failure as a mother… maybe I had decided that my love wasn’t enough for Jordan. Coming to a place of acceptance of myself and the limitations on our relationship took me years. But meanwhile, all of this was happening:
Jordan didn’t recognize me.
Jordan didn’t even respond to me.
Except to turn his back.
I couldn’t tell when Jordan was sick.
I couldn’t comfort him when he was hurt.
I didn’t even know when he was hurt much of the time.
Jordan sucked on his hands constantly…
it made him smell so bad
it made his touch repulsive.
It made my heart break to feel that way about my own son.
He threw everything he could pick up.
He broke stuff.
And this was progress from doing nothing.
He screeched obsessively til my ears rang.
He began hitting everybody and pulling hair.
And this was progress because he used to hide silently.
He refused all food except yogurt.
I had to mix all other foods into yogurt, which made my
first trimester self nearly vomit three times a day for months.
I tried rocking him.
He screamed until he disassociated and passed out.
I tried putting him in a carrier.
He struggled violently for hours.
We couldn’t go to restaurants, fairgrounds, grocery stores,
Because Jordan was too scared or put everything into his mouth constantly.
The list goes on and…
I was so tired.
I was so discouraged.
I was angry at God.
I was angry at those people who said being a parent to a kid with special needs was awesome.
Why wasn’t it working? Why wasn’t he learning? Why was he still so scared? Why was I failing?
During all that time during the first years, I was mostly resolute in telling my heart and emotions to wait. I knew that we were a better fit for him than the orphanage (duh) and I reminded myself that bonding often takes time. I told myself to be patient. And I was determined to wait for him to see me and love me and for our family to find its footing. During my main bout with depression, I pursued some counseling. I’m so glad I did. It was through that process that a light began to shine through.
This light explained things like acceptance. Like accepting the limitations of our relationship. Like accepting that it’s ok that I can’t meet all of his needs or understand him or be able to comfort him. That it was ok to be imperfect. That I was not a failure as a mother. I felt a gracious release from the expectations I’d set up. It was a powerful moment that has been digesting for a year or more now. And I have been falling in love with JORDAN. Jordan, just like he is, just like he will be. Instead of being submerged by the practical difficulties and depressed at the limitations in our relationship, I am seeing instead all the successes! It’s not like I’ve “arrived” or that our story is complete, but after 4 1/2 years together, I often look at Jordan with pleasure and with warmth in my heart!
Jordan has healed from his social and sensory neglect in the orphanage in so many ways. With pride, let me tell you some of the things I love about my son and that make me proud:
Jordan no longer hides in corners.
Jordan no longer ignores people.
Jordan no longer ignores all toys and furniture.
Jordan no longer hides his emotions.
He now participates with the world.
Jordan looks for ways to engage!
He loves music.
He plays the piano.
He knows how to push buttons and how to find them on stuffed animals.
Jordan cries when he gets hurt and seeks physical contact.
Jordan reaches for our hands when he wants something.
Jordan is more nervous about strangers and more calm around us.
Jordan has developed some emotional stamina and control.
Jordan knows how to walk holding our hand.
Jordan helps to dress himself… and is adept at undressing himself.
Jordan eats yummy soups now.
He is silly.
He looks at me when he’s being naughty to see if he’s going to be caught.
Jordan… is naughty sometimes/often. (sometimes makes me pull my hair out but is often endearing)
He loves to run.
He loves ice cream.
He loves to play run-around-the-house.
He has really good aim with a ball (or toy).
He is beginning to tolerate haircuts.
He is learning to respond to us emotionally.
He desires my approval.
He seeks my presence.
He knows his name.
He knows what I mean when I say it’s time to eat.
We’re gambling that he has the emotional endurance to go camping with us this summer.
We can go outside together so long as I stay within arms reach.
I know him better than anybody else.
I am his mama.
Yes, he still requires constant vigilance. There are still the practical and emotional hard parts of being his mom. He still screeches and pulls hair and with his growing mental capacity, he has learned lots of clever ways to pee on things and us. (boys! agh!) He is still uncomfortable with physical touch and I treasure the brief moments when he lets me close to him. Lots of that first list is still true and he’s added other challenges to the list. There are still so many things he can’t participate in and so many family traditions we’ve had to change, drop, or do without him. What has changed? My heart has changed.
Before, I felt like a failure, because of the lack in our relationship and the slowness of his progress. My eyes saw my son and there was grief. Now, I know that I AM his MOTHER. And when my eyes see him, they smile fondly.
And as for those benefits people talk about for parents of a child with special needs? Here are a few: I am more free from the expectations of society. The temptations to look good, behave a certain way or be perfect in so many ways seems disconnected from the real depth of life I experience now. I am more confident in myself. I am more patient with people. I am prouder of the successes of individuals, even those I don’t know. … I struggle to know how to put this into words.
Having accepted the limitations in my relationship with Jordan and then discovering the joy in our relationship as it is… well, it changed me. It changed my worldview. I myself am now acceptable within my own limitations. I am more me and I am more able to love others, despite their limitations and faults. It’s a pleasure to see people how they are and to release them and myself from expectations.
Oh, and to wrap this up… it’s pretty awesome to be Jordan’s mom. I love him. I enjoy him. Our family has found its footing, compared to before. Sometimes the practical stuff still gets me and I still have all the normal family stress and ups and downs, but I am now secure as Jordan’s Mommy. And maybe sometime, just maybe, he’ll know that. That’d be awesome.
For those friends of mine who are processing some of those earlier phases… be patient with yourself. Jordan being old enough to go to school and the school being a good fit was a big relief to our family. Now I have some time to do those things I couldn’t do with him. Ask for and accept help with housework whenever there is an opportunity. And know that you aren’t alone… and that what you’re doing is worth it.
I have a few videos of Jordan cuteness for you.
Jordan hanging out in my bedroom while I’m on the computer. He’s playing with some beads, watching them twirl and smacking stuff with them. He has very good aim. He’s showing restraint in not being naughty (hitting me, knocking stuff off the bed, etc.) and he’s showing how well he is PLAYING now… seeking input and finding stuff to do. He is very aware of his surroundings and looks at everything with a calculating eye. He didn’t use to do any of that.:
Jordan in the car. He plays with his foot on the seat in front of him repetitively. He’s kinda stressed out, which is where the huge tense smile and squeals are coming from. At about one minute, you can see him slamming his head against the back of the seat. He sometimes does that near constantly. Especially when he’s stressed. I try to pretend it’s his heels drumming… then it hurts ME less.
Here is Jordan playing in the pool with the hose with his Bulgarian buddy, Levi. I love this video… Levi is kinda hanging out and probably thinking Jordan is nuts. Jordan is playing with that hose with so much awareness of how to make it work. Jordan also glances at Levi when he several times, gauging whether he was going to interact. This laughing and smiling is his happy and excited laughing, not his bored and stressed one like in the carseat, though they look kinda similar.
This one makes me laugh out loud for that one fraction of a second…. did you catch it? Jordan decides to put water on Levi. And then he thinks he’s going to get in trouble and stops as fast as he started and flicked a glance up at me like he’s hoping I hadn’t seen it. (rolls eyes) Silly boy! Mamas see everything.
Levi and Jordan just hanging out…. and sharing a toy. And Jordan playing the same tune over. and over. and over.