The Bell Curve

Bert had his first full psych eval done at school. This is done primarily to assess the IQ, and assist in determining placement. This is a quick explanation of the IQ bell curve. See the very bottom of the curve? That lowest percentile of people? That little tip of the bell that is <60? That is Bert. He's down in that teensy bit of bell.

I am not a delusional person. I have a pretty good grasp on the daily living and cognitive skills of my son, and I know that he functions still about at the level of a 2 year old, more or less. He turned six last week, so I have been parenting the same growing child, now 50 lbs as a 2 year old for about 4 years. We have effectively ruled out the autism aspect as instead severe Sensory Processing Disorder coupled with a very low IQ and ADHD. Honestly, I'm not convinced that the ADHD is accurate. C'mon, what kind of attention span do you expect a 2 year old with SPD to have?

Alas, it is difficult to read a report in which your child's intelligence is graphed and documented in formal language by a licensed psychologist that states your son tested low compared to his same age peers, over and over. It sucks to see a number that has been referred to as "trainably mentally impaired" or "severely mentally impaired". Though I did not relish reading it, it was like reading a story that I'd heard over and over again in spoken word. The document was newly drafted, but it was not unexpected. I was pleased with myself that I handled it as the information that it was, no big emotional breakdown required. Yet still, I can't seem to get my mind to let go of the graph of my son's IQ.

Bert, a History

A friend on the Down Syn forum posted the link to the Autism Speaks Video Glossary. All of those questions I had melted away. It is abundanly obvious that Bert is on the autistic spectrum. I find it fascinating, I can't get enough. Other kids are acting like Bert. I don't know anyone IRL who acts like him, so when I hit on something online, I'm fixated. I'm not alone!

I get really frustrated with my church in regards to him. Not for lack of trying, we have been totally unable to successfully integrate him there at all.

First attempt: Leejo teaches Sunday School. Bert was 3. He would run off on me in public, so we put door knob covers on the doors of the room. Mom's gonna teach Sunday School so Bert can participate. First time, he played in the corner by himself. No big deal, it takes him longer to adjust. The second week, he straddled my lap, and held my face in his hands about 4 inches from his face. I now know that he was controlling his environment. He would turn off the lights and cause all types of trouble. I was commited, but had the Chief take him home. First trial of integration failed, lesson: remove mom from the picture. (remember, at this time I had no inkling that he was on the autism spectrum, I thought his problems were hearing).

Next attempt: Our church policy is that nursery is for 0-3 year olds. There is a "Children in Worship" program for 3-7 year olds, divided into 3-5, and 6-7 year old classes. One of my friends is teaching the 3-5 year old class the year Bert is 4. I talk to her about him, and the class is in the room with the door knob covers, so we give it a go. I send him to nursery, get him out for CIW, and send him down. He played in the corner, but at least he was out of the nursery. At this point I know his hearing is fine, and think that if I just use really consistant discipline that he will grow out of his poor behavior. Well, week 3, my friend offers to walk Bert downstairs for me, saving me the trip. She walks him down, and unbenounced to me, allows him to tag along with the 6-7 year olds, cuz that's where he wants to go. The 6-7 year old teacher does not know him, allows him to run in and out of the room, and all over the church basement, then dismisses him with the other kids, unattended. Beaner and I go to find him, and he is GONE. He will gladly just leave the premises, walk out the door and just keep going, so we check outside first. Then Beaner comes back through the church gym, where a cake and coffee fellowship is being held for pastor appreciation. Bert has taken 7 pieces of cake, and eaten the frosting off while we were trying to find him. Big sigh of relief. Sugar buzz for the day. Not a single adult who had entered the room in the meantime stopped to help the little boy with DS who was obviously unattended in the gym. Hmmmm

Now this year. Mom gets smart. We try "God's Safety Zone", our church's alternative to VBS. Every Wednesday morning for the months of June and July. Mom secures a "helper". Unbenounced to mom Bert has the helper at her wits end by the end of the first day. They are rotating helpers, and allowing him to run the church and disrupt other classes (including Beaners, much to her mortification), because they can't get him under control. But nobody tells mom because mom obviously needs a break. Mom finds out just how bad it got when on the Mission Trip, Bert's designated helper goes on a vent about what a Pain in the Neck and how out of control he is in a small group, forgetting that Rockstar is his sister.

So we are back to square one. My 5-1/2 year old goes to nursery still. He freezes dead in his tracks if we even attempt to get him into the Sanctuary. I don't even know how to start trying CIW, or Sunday School again. I'm at a loss. Bert always has a BM in nursery, it's part of his anxiety, and the attendants can never manage to get him changed, he resists.

Part of me wants to jump ship, but I really don't think there's a better church for us just waiting on the next corner. We love so much about our church, but really grieve that there's nothing there for Bert. I am working with another mom, whose son has MD, trying to get programs going, but the fact of the matter is that there are no willing workers.

So we will stay committed to our church, and work to build a program that will probably be too late for Bert.

Bert

I'm gonna be frank. Bert is by far the highest maintenance kid of all the high maintenance kiddos I have. I'm pretty sure that if I crunched numbers he would be in far more blog posts that any of the others. (I don't want to actually crunch the numbers, I'm afraid it will be overwhelming). No matter what else is going on around here, Bert is at the forefront. The other kiddos have trials that come and go, but he is always up there in at least the #2 position, if not #1 for needing attention.

This week, once again, Bert is at the forefront. I can't believe I haven't posted more about his new school. We are finally getting him into a very structured, all day 5 days/week program that runs year 'round, this year going until mid June, then reconvening in mid July. They have an incredible Sensory Room, and I believe will be a place where he can finally actually meet some IEP goals (I hope). Friday we hold the transfer IEP, and set a start date based on transportation and the hiring of the new aid. (Yes, they are hiring and aid to get him in there.)

But prior to that, on Wednesday, we go for part 2 of his psych eval. The first meeting, I went and discussed my concerns, this one, he will be evaluated hands on while "playing" with the neurodevelopmental psych and the AI specialist. I believe we will go home with a diagnosis, and I believe it will be PDD-NOS.


Despite the obvious stress of appointments of this type, I feel as if I'm on the very brink of a breakthrough. If not in Bert's behavior and learning, then in getting him what he needs. The sheer fact of the matter is that I'm not convinced we will ever really have the breakthrough of development that he always appears to be approaching. Only time will tell that. Our breakthrough is in management of our resources. I hope to have Bert settled in enough so that his needs are not always at the top of the list. So that I can have more energy, more joy and pleasure in all of my kids, so that he will not always have me totally tapped out. Here's hopin'!

Gluten Free

Due to Schmoozer's GI issues and Bert's AI aspect, we are looking into going Gluten Free. Seems overwhelming right now. Not sure even where to begin. I'm not wasteful, so it would kill me to just throw out all of my gluten-y food.

Big sigh.

HP Therapy

I have found a new form of therapy. My mom brought me yesterday. It's called HP OOTP therapy. I found it incredible, uplifting, fun, exhilarating. Definitely t
herapeutic. And Sirius Black is hot. Even my 63 year old mom thought so!





I am also reading, "The Curious Incident of the Dog in the Night-time", bu Mark Haddon. It was a big book club book a few years back. If you haven't read it, I highly recommend it. For me this also is therapeutic, as I can see a bit of Bert in Christopher, the main character, and it gives me a glimpse of what's going on in my son's head when he shuts down, and also why he "makes sick" when he gets too overstimulated.

I am feeling better. I am not sure if my husband will be working next week, but I highly doubt that the shut down will go long enough to put us in serious financial jeopardy, which is a relief.

It Feels Odd

Both of my boys are going through testing. One on his tummy, one for his behavior. I feel like a hypochondriac, ya know why? Because I'm hoping for bad news. "Yes, Lee, Schmoozer has XYZ disease of his stomach and small intestine." or, "Yes, Lee, Bert does have PDD-NOS."

Sounds sick and twisted, sounds like I have issues that I need mental health screening for, eh?

Try to see my perspective.

Bert has been in school for 2 years, and has made virtually zero progress. So what happens if someone slaps the word "autism" or PDD-NOS on him? He gets better services and more help. He maybe, just maybe stands to get some help this year and, what's that word I'm looking for? Oh yes, succeed this year. Wouldn't that be something. Actually having made progress from last years goals instead of writing the same IEP goals again next spring? If a label buys him this, well, so be it, I'm in!

And Schmoozer. He started barfing the other day. It was like a tornado siren went off. We all hit panic mode. No, not the hospital again, no, we can't. So if the doctor lady takes a peek into his little esophagus, stomach and duodenum next Tuesday and finds a definable, treatable problem, could I really feel bad about that? Schmoozer came out of this puk-a-rama OK, but how long till we're staying at that big, high rise hotel downtown again with 3 meals a day of sugar water with added salt and potassium, and big metal clanky cribs? How long before I'm holding him while he's barfing every 10 minutes around the clock for some unknown reason.

So yes, Mr Neuropsychologist, and Mrs. Pediatric Gastroenterologist, give me your worst. Knowledge is power, and I feel power less.

New Opiate

I have just stumbled upon a highly addictive substance. It is called validation, and it is delivered by someone seeing the difficulties your child is having, acknowledging them, and assuring you that solutions are possible, and even forthcoming.

Yesterday Bert went to a PT who specializes in Sensory Dysfunction. She played with him in such a way that she got him to exhibit the very behaviors that I find so concerning.

While no solid answers were given yesterday, there were some very affirming comments such as: "Yes, some kids with DS can and do have a dual diagnosis of autism." and: "I can see that some of his actions are very autistic behaviors."

If you're wondering why on earth I'm relieved and happy to have someone tell me that my son very likely is indeed on the autism spectrum, then it needs to be stated that he has been unsuccessful for 2 years now in his current classroom, has gone through a solid year in which we wondered if he was severely hearing impaired because of his total lack of response to anything verbal, and because I have been treading water for nearly 6 months trying to address his needs by myself, and finding that I am just not well enough educated, and don't have enough time to be an OT/PT, neurodevelopmental psychologist, ABA professional, and teacher for a child on the autism spectrum. So to have the behaviors that have been long standing named and given a proper place on an IEP with services implemented sounds like the end of a long season of treading water.


I feel as if I could jump over the moon. This PT plans to submit a report to the neurodevelopmental psychologist prior to Bert's eval with him, to fill him in on her observations. I am so hoping that very good things are forthcoming for my son.

Everything's OK

It is never good to dwell on a label for your child when said child is not near you at the time.

When Bert was born, I would leave him in the hospital and go home, and Down syndrome would loom large over my head and frighten, taunt and threaten me. I would return to the hospital and this sweet little cherub would be there without a threat in the world from things like "mental retardation" or "low muscle tone".

I returned home with Ben yesterday following his hospitalization during which Bert's upcoming evals and pending diagnosis visited me as nightmarish visions. My mind raced, and my head swam.

Then I came home, and my son ran to greet me, smiling and shouting "Bobby" (mommy). Everything's OK!

Cannot Deny It

For several months, I have been trying to get the Chief's mind around the possibility of Bert's autism. At first he patently rejected the very thought, for quite awhile. Then he mentioned a co-worker with whom he thought we should socialize. The premise of this was that this co worker's son has autism, and they face a lot of the same difficulties we do. Next came the pronouncement that said co worker's son is "just like Bert, except without the Down syndrome." Then last night, out of the blue came the announcement that, "I personally think that Bert has autism and Down syndrome." The relief I expected came. No more up hill battle at home. As the diagnosis comes, it will be accepted and dealt with by both of us, not me fighting to get my husband on board.

Then came the dread. The hand to forehead slap. The utter realization that if the Chief is bought in and on board this train, that we are headed out of the station, on the journey. I'm scared. I've known Bert's had trouble for a couple of years, but convinced myself that it was an adjustment period, a phase. That with enough strength, will power, research and tools I could get him through this, and he'd be a "normal" Down syndrome kid. I am realizing just how limited he is by his own senses and perceptions of the world. Just how limited he is by how people react to him because his social skills are absurd.

I am again grieving my child. When he was born, I grieved the loss of the child that for just a few moments after birth existed. My typical boy, named after his father and great grandfather. The football player, hunter and fisherman that his daddy always dreamed of. That grief was brief and sweet, as the baby I held was so precious.

Now my little boy, who has shaped me as a person, as a mother, as a Christian, as an advocate, though he has not changed, by virtue of the addition of a new label, will never be the boy with Down syndrome that I had envisioned. Admitting that is killing me inside. I didn't expect it to be this strange, hard and painful. My son is doubly disabled, and once again I am in new territory with new verbiage and feeling utterly lost, different and alone.

The little boy that I still hold is just as precious. Just as much a part of me, and just as much a light in my life. He's still the little guy that I pull into bed with me when he awakens early in the morning because his low muscle tone makes him feel so good to cuddle. He's still the guy who does a happy dance when we finally figure out just what it is that he's asking for. No, he hasn't changed at all, but my life has. A new label has been slapped onto me--though still tentative--"mom of autistic child"

My other labels have grown on me. Mom, mom of boy with Down syndrome, mom to my niece, mom to second boy with Down syndrome, mom to boy with Hirschsprung's. Mom to boy with autism and Down syndrome....

A Few Minor Epiphanies

First, Beaner is gone. I feel like part of me is missing. I feel empty, lonely, lost and disoriented. While she's been gone, there are adoption discussions on a favorite forum about relinquishment grief, in various areas. I am sitting here feeling all sad and sorry about missing Beaner who will return tomorrow (Lord willing), and meanwhile posting alongside mommies who never get to hold their babies. My heart aches for them.

Second, I realized that if all kids with DS were like Bert, that there would not be summer picnics, holiday parties and outings for the Down syndrome associations because nobody would go. The parents wouldn't take their kids, because it would be so exhausting that it wouldn't be worth going to the party, just like it is for us. I have found an awesome forum where parents of kids with DS discuss these things. I have realized that my son is not a typical child with DS. I am so thankful that we are pursuing help. At the same time, I am thankful for the personality he has, it is a gift.

Third, talking with Rockstar yesterday, I realized that God has blessed us amazingly with harmony and unity in our family during all of the trials of the past few years. With the stress of Rockstar's mom's decline and death, the Chief's parents, Phil and Millie with their alcoholic troubles, Schmoozer coming along with his unforeseen health trouble, Bert and his behavior, and the Chief being away most of the time for 10 months, I am amazed that our family is not in shambles. God has blessed us with ties to bind us together. I am humbled, amazed and in awe of our Father in heaven who has blessed us so abundantly.

"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." James 1:2-4 NIV

Coming Together

Things are coming together for both of the boys. Schmoozer is getting an upper GI series and EGD to determine how serious we need to get about his reflux that keeps on giving. Hopefully the doc will tell us that everything looks good and that a few more months of smelling of baby barf all the time is all we're in for, but at 18 months, it's only prudent to be sure there are no structual abnormalities.Bert is more complicated.

The Neurodevelopmental Pediatrician wants a sleep study done because of his erratic sleep and behavioral problems. We also are getting a psych eval and behavioral support from a local agency that our insurance pays for. This is huge, I never thought we'd be able to pay for it, out budget is stretched as it is. This is the end all for his evaluation for autism, and whether or not he is on the autistic spectrum, we will hopefully get the behavioral help we need.I don't write much on it, but Bert is a very hard little boy. If you leave the house with him you are guaranteed to come home feeling like a boiled noodle. Whether it's collapsing in the parking lot, running out the door, kicking doctors in the groin (I've learned to prevent that one) throwing anything and everything he can find on the floor (or at me or another person), or getting so overstimulated being unable to leave that he bangs his head on whoever or whatever is nearest and starts pulling my hair and ripping my glasses off. If he goes swimming he submerges himself over and over, diving and diving. He gets water in his nose, swallows it, gags and vomits, and keeps going. He will do this until he is blue and shaking. If removed at any point in the process, he throws a fit that lasts usually 45 minutes plus. The longer he swims, the longer the fit. For the longest time we thought (OK, I thought, the Chief never did) that he would grow out of it, but at 5 years old and with valiant efforts at discipline, we are still struggling with the same things as when he was 18 months. It is obvious that my son has great difficulty in society at large, especially in large, social situations where he must do anything other than whatever he wants.

At home it's better, but he doesn't actually play with toys. In my several delusional years, I bought him every toy on the market, thinking we'd find one that really got his interest. He plays with them until he figures out how they work, then they go into the toybox. The toybox is where he sits and removes all his toys, bouncing them exactly 3 times on the edge before throwing each one. Then he gets out of the toybox, and bounces each toy three times and either throws it back in, or further away. Sometimes a toy will hit Schmoozer, who likes to sit in on the show. Schmoozer then cries, sending Bert to the moon. Bert starts screaming, and we have chaos until they both happen to stop at once. For entertainment he makes sqeaking noises, like when you hold the opening of a balloon and let the air out through the stretched opining. When he bores of this he goes into the kitchen and opens every single cupboard, the fridge, the stove, anything that opens. We have secondary locks on each door, as well as childproof door knobs. If he gets a door open, he goes wherever his legs take him, whether that is up the road (fortunately a cul-de-sac with a 15 mph speed limit), to the neighbors, accross the field, or into the car. Every babysitter we have ever had has lost him and are scared to try again. The only thing that stops it is TV. TV is my respite. It is the only way to keep him happy without a mess or direct 1:1 supervision. Now you know why I'm always home;-).

Pay no attention to the boy behind the curtain. That is what he is saying as a bit of his inner self comes out. We saw that boy a lot when he was a baby, now we just see little glimpses. I try to coax him out to play, but he never comes all the way out.

If you're wondering why I adopted a second child with Down syndrome, the answer is that I just had to. I don't know why. The child in the paragraph above sounds like a burden. He's not. His hugs are delicious, his passion is contagious, his zest and zeal for life is abundant, and when he breaks through, when you see the person behind the curtain, you can't get enough of him. He's incredible, amazing, delightful. Though Schmoozer is no more like him than Beaner is like Rockstar, I knew that a second child with Down syndrome would complete our family. It is through and because of Bert that I have discovered who I am, what I am best at, what I love to do. I love to parent kids with Down syndrome, it's what I'm meant for.