Four years ago we were packing our bags and waiting anxiously for the final notice of our travel to China. We did Christmas at home knowing we had a son across the ocean and we travelled early in the new year to meet him.
When we made the decision to open up our hearts and family to this little boy in a land far away we knew that he would come with many unknowns. Many of those caused me some fear in the weeks leading up to our travel date. Would he grow to love us, could we be the parents he needs, would our other kids adjust well, would our family crumble into chaos and would this adoption be the proverbial final straw that sends us all to the looney bin? We moved forward with eager and trembling steps knowing that this is what God was leading us to do. More specifically this was who God was leading us to.
When we brought him home he was six years old and had been through a lot. An abandonment as a toddler, two different orphanages, and five foster homes. He has cerebral palsy that mostly affects both legs and his left arm. He had just started walking and was able to walk a few steps. We knew those things before we left Canada. What would be a wild card was his development and cognitive ability. We were bringing him home regardless. This was a special needs adoption and we were under no illusions that things would be easy or free of surprises.
With CP there is such a wide range of ability level both physically and cognitively. I have known people who are completely unable to control their body but yet are very intelligent and their minds are unaffected. Some may have minor physical limitations but their cognitive ability is severely impaired. You just really don't know, and you certainly can't assume that someone with a severe physical disability has any intellectual impairment. We didn't know where our little guy would fall, but I've known a few kids with CP and they were all average intelligence.
When we met our little guy we were smitten. A beautiful smile that lit up at the simplest of pleasures like bubbles or a buffet meal. He babbled in mandarin and enjoyed being snuggled. He seemed quite a bit younger than six years old. Partly because he was the size of a Canadian three year old.
As the months and years at home followed it became apparent that not only was he developmentally delayed from bouts of malnutrition, lack of schooling and neglect but that something more organic was at play. Both nurture and nature were affecting his abilities. A year after adjusting to just being home he was enrolled into Kindergarten. He loved it and continues to love going to school. His EA, teachers and the other students are so good to him. The have worked so hard with him and always set the goals high.
Recently an educational psychologist did a full assessment of his intellectual ability and IQ. It was put off for a few years in order to let him catch up a bit and learn English. After realizing that this was about as caught up as he's going to get we finally got the assessment done. Yesterday we got the report back and went over the results.
I can't say I was shocked, although my husband says he was. I actually have mixed feelings about the results. In one sense theres a bit of relief and in another sense there's some sadness. I think it will give me more patience with him when I remind myself that he's not just being dense or difficult but that he really just can't get it.
Across every category he was "Extremely below average" and his percentile was 0.1%. The actual number of his IQ did floor me for a second. I'm not totally comfortable sharing the number but it is below an average person with Down Syndrome. His expressive and receptive language at 10 years old is that of a two or three year old. So there we have it.
In a way that validates what I've noticed in trying to teach him certain things. I don't want to hold him back or set the expectations too low but I also want to be realistic. Expecting too much just causes frustration for us and for him. I think the EA at school may be relieved as well as they are going to stop pushing so hard with things like learning letters (which has been entirely unsuccessful after three years of effort) and start working more on life skills.
The thing about the assessment is that it doesn't take into account that he is so much more than a test score. That number is a part of his disability but it isn't who he is. It also doesn't score the areas where he does have intelligence.
Here are a few statements written in the assessment that helped soothe my aching Mommy heart. They reflect more accurately who this boy is. The boy we know and love.
"Elijah was observed to be a happy and friendly boy who enjoyed engaging with others"
"He was observed to be seated at a table colouring with a group of other children. I sat with the group and Elijah engaged with both me and myself and the other children. He enjoyed providing me with ideas about what I could draw."
"Elijah presented as a cheerful and happy boy"
"Elijah was cooperative throughout the duration of the assessment and completed all tasks required of him. He tried hard, even when the tasks were difficult for him. He demonstrated a positive attitude and confidence in his ability to attempt tasks."
Those observations very accurately describe my son.
He has struggles but he is more than that.
Here are some of the things he's really good at:
* Elijah is a very loving boy. He regularly gives me spontaneous hugs and back rubs and says "I love you mom".
* He is very generous with compliments. He basically tells everyone they are "cute" and tells me all the time "You're a good mom".
* He is polite. He is always on point with his "please", "excuse me" and "thankyou". He will patiently wait his turn and doesn't whine.
*He's an amazing big brother. He's always looking out for the little ones and the first to warn me if something is amiss. He is very affectionate, protective and playful with them. Annie and Eli are good playmates right now.
*He has a good imagination and loves to play pretend.
* He follows directions and is compliant. For a parent that must makes life easier. He can even follow and succeed at directions with multiple steps as long as the message is clear and he understands the words. I have a few children with ADHD so the ability of a child to hear, process and successfully follow multi step directions isn't something I take for granted.
*He enjoys simple things. It doesn't take much for him to be happy and content. Give him a bowl of popcorn or rice and he's happier than he is at Disneyland (unless you buy him popcorn or rice there). He's really very easy to please.
* He's helpful. The boy loves to be busy and feel useful. He's great at picking up toys or helping to set the table. He's as happy as can be when he's doing chores that everyone else grumbles about.
* He is very sociable and enjoys being with other kids and participating in activities.
*He is very perceptive. I think some of his ability to read a room, judge people's moods, and be hyper aware is a survival tactic he learned early in life. It's both a skill and a detriment as he can easily become frightened and very anxious if he feels someone is upset or there is potential danger. There's not getting much past him. If there's tension in a room or he's being excluded he's very aware of it.
*He is good at self care. As much as his physical ability allows he is eager to do things himself. He dresses himself for school. Takes himself to the bathroom. Washes his face and brushes his teeth (although I still go over them afterwards to make sure it's done well). Get's his own pajamas on.
*Elijah is great at finding a way to do what he wants to do. His ability to make adaptions and work at things until he can do it is remarkable. He's not a kid who is content to sit on the sidelines. He wants to be involved and finds a way to do so.
*He's always the first to pray for whoever in the family is hurt or sick, before it even crosses my own mind to do so. He's our little intercessor.
To be honest the hardest thing about parenting him has not been his disabilities but rather his past traumas and the damage they caused. He has a lot of deeply ingrained fear and when that is triggered he will fly into fight or flight mode quickly. It's like something primal deep inside him just takes over. It often involves high pitched screaming, raging, spitting and making himself as physically gross as possible. Often this happens at the worst possible times, and over the most ridiculous things (at least to us). It's very hard to have patience with that. Thankfully as trust and security has slowly grown these episodes are less and less frequent.
He really is just one of the kids. I don't think about his disabilities all that much because it's not at the forefront of our relationship as a mother and son. The extra stuff required when parenting a child with physical and intellectual disability is just part of life. It all seems pretty normal now. He is expected to behave himself, he is expected to obey, he is expected to be kind to his siblings. He has consequences if he isn't doing those things. He is expected to tidy his room and do what is asked of him. He isn't kept in some sort of separate "special" category. He has his own personality, his own likes and dislikes. He has friends and he loves his family well.
He's just Eli. He's just our kid.
All our lives are richer because of this boy and his smile.