My afternoon yesterday was most likely your night…since I live on a rock in the middle of the Pacific ocean. I read through Facebook posts and tweets about the Cardinals losing, Monday night football, Dancing With the Stars and some pretty nasty comments about the presidential debate. My mind was on other things. I was googling “mental retardation.” I engrossed myself in stigmas and causes. Medicinenet.com defines it this way, “Mental retardation: The condition of having an IQ measured as below 70 to 75 and significant delays or lacks in at least two areas of adaptive skills. Mental retardation is present from childhood.”
I read about studies done in orphanages in Budapest. Some said that for each month a child spends in an orphanage up to age three, their IQ score goes down 1/2 point. I read about stigmas of each name. How retard has become a dirty word. I know, I used it on just about everything growing up in the ’80s. Now, the politically correct phrase is developmentally delayed. Huh? That’s Jack’s special need according to all his paperwork.
Why am I bringing all this up now? I just left Jack’s cognitive assessment. I won’t have the results for several weeks, but I know the test the psychiatrist was using needed to be changed to fit his level more than once over the three hours we spent in that little room. Jack was awesome. I think in the same situation I would have been irritated with someone asking me the same question in a sing song voice repeatedly. I didn’t do so awesome. Don’t get me wrong, I didn’t lost my composure. Here’s the thing. It’s a standardized test and Jack, well, Jack’s not standard. We call those little wax things colors. Dolls are babies. I’m Mama, not Mommy. Grandpa is a bear. Things like that tend to skew a test. I can’t think of a time I’ve said, “Jack give me the _____.” I say, “Can I have ____?” or “Hand me the _____.” “Get your shoes.” “Find your cup.” I wanted to yell, “You aren’t asking the right way!” I did finally say, “In our house those are (and then I spelled out) B-A-B-I-E-S.” That’s when I got the standard rules for standardized test speech.
Jack can count higher than half the kids on Bria’s class but he won’t answer if you say, “Jack, how old are you?” He just learned to say “Mama and Daddy” not that long ago. Jack parrots our behavior. Matching something is an abstract concept for him. He shares. He tries to do what we ask. Today I was overwhelmed leaving the test when he patted my shoulder and said, “Woook! Is a train!” He is getting it, ever so slowly. The fact is for whatever reason he is delayed.
I heard all about the orphanage delay. I had delusions of grander. Apparently what I heard loudest was, “he will catch up.” Instead of that, can’t speak, low muscle tone, missing fine motor skills points. I heard he’ll be like everyone else. He’s not. Neither is Arleigh, or Hanan or Bria. We all come with our own set of kinks and quirks. Low IQ was off my radar. I thought this would be, show him a car, say car, he’ll learn car sort of deal. It’s not. I’m mad right now because I hear some people saying, “I told her so.” I hear the naysayers in my head saying, “Do you know what’s going to happen to your family?” or “Did you really count the cost.” When I am overwhelmed with Jack’s delay I’m reminded that there were people along the way of our paper chase who wanted to tell me it would be too hard. When I’m struggling, sometimes I wonder what they are thinking now.
This is what I would say to myself of almost two years ago when we were just getting Jack’s file…
If you think the paperwork is scary now, you don’t know what scary is. Wait until they take him back for an MRI to look for brain damage. It is going to get a whole lot worse. It’s not blue skies and rainbows and sisters loving on brother the second you get off the plane. It’s hard. He’s going to get mad because he can’t tell you how he feels. You are going to get mad because all you want is a day at the beach and the beach is going to be the most terrifying place on earth the first few times he goes.
During this paper chase there is something about it. You are broken and want your boy home but you also feel like you are part of something bigger. You somehow really see your place in God’s plan. It’s easy now to shirk off naysayers. It’s a bit harder when Jack is in your arms and you want him to act like a normal little boy and he’s not. When you are holding him and he is tremoring like a seizure is coming on just because something is new and people are giving both you and Jack funny looks, try to remember that Wonder Woman feeling you have right now. It’s a bit harder to hold on to these days but it’s still there. Remind yourself that you are still part of God’s plan. You are helping the world see God’s love in a little boy.
Don’t quit. Jack will teach you so much about yourself. Some good, some bad. Jack is going to show you and those little girls a bigger world. He is going to win EVERYONE over even though he doesn’t talk much. The random guy at the school will come to love him. He will make people laugh out loud on a regular basis and you get to watch as he touches their hearts. Jack is going to open up compassion in Arleigh, Hanan and Bria like you’ve never seen. Bria will walk away from her little sister role to become a champion to her brother. You’re going to cry over all the tests. It’s going to be hard to watch him fail. Hard isn’t impossible. In his failing, he just gives himself more room to grow.
Jack isn’t going to be what you thought. He won’t be perfect. He’s going to be better. He may be with you until he’s 18 or forever. Either way it’s okay because you’re going to learn that when he’s around, you’re better. Delays are hard to swallow. It’s just one more mountain to climb. God wouldn’t have sent Jack to you if He thought you couldn’t do it. Somedays you may think you can’t. Remember that with God, you can.
Don’t quit! Sincerely,
Brandi is a Christian, military wife and mama to four true blessings. After living in Iceland and Maryland she started blogging so their extended family could keep up with their life on the east coast. Two moves and two kids later, one brought home from China, it’s about faith and family, dealing with developmental delays and their misadventures in Hawaii. You can read more here.