Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Friday, February 10, 2012

When I Suck at My Job

I'm a regular poster on the Down syndrome forum called Downsyn. I've been there for years, and even as most of the "old timers" have moved on to Facebook or other social media sites, I've stuck around. It's my online "home" if you will.

Lately I've been having a problem getting things done, specifically paperwork related to my kids, or showing up to the right place at the right time for meetings or other events. Yes, I keep a calendar, but this month I'm going to blame it on the fact my calendar keeps moving around due to the kitchen remodel. Don't worry, next month I'll find a new excuse.

So yesterday on Downsyn my friend was looking for an old post she wanted to print out and give to her daughter's teacher. She was sure I had written it, but I had no recollection of it at all. She eventually found it, and she was right! It was written by me in 2005. I laugh. In 2005 I hardly knew anything at all. So here's the post. I bet there are a few here who can identify with it.

I've heard them talk in the staff lounge. You know who they are.... You know who you are! You've talked about the parent of a child with a disability who has become uninvolved in their child's education. No wonder that child can't succeed! Afterall, his parents do nothing for him! They never turn forms in on time. They forget to sign permission slips, and God forbid there should be homework, 'cuz you know it's not going to get done anyway! When you do see this parent, (I'm going to follow the law of averages and say it's the mom) she the looks like she just rolled out of bed. HHmmmmm I wonder if you really know? I wonder if you REALLY have a clue what it took to get that child to school? I'm not talking about just that morning, but for the past several years!

Lets first take the mom of a typical child. They fly through infancy and toddlerhood, hardly noticing that their child does 10 new things a day. Yes, they notice the major milestones...When the baby sat up, crawled, etc. But most of the time they can't tell you the other very little things, like the day their baby discovered his hands, or the day he started cruising furniture.

Then the child hits 3 or so and can start dressing himself. (Do you know how many moms of kids who are perfectly capable, dress their children? It's sad!) and the very next day it seems they're 5 and headed for school. Mom now moves into a new phase of her life, particularly if this is her youngest child.

Now, lets turn the tables a bit. My baby had Down Syndrome, but you could substitute a number of diagnosis in it's place. She spent the first 6 weeks in the NICU, with me and the rest of my 5 kids making the 120 mile round trip every day so I could 1) see her and 2) hopefully get her to breastfeed.

When she came home, our life took on a very unusual kind of normal. It is the "normal" assumed by all parents in the US who bring home a new baby like Angela. It's called Early Intervention, and when run right can give babies with "issues" a fantastic boost in their development. The goal is to keep kids from falling behind, at least not very far. The sad thing about Early Intervention is you have to be a marathon runner to participate. Oh, did I mention participation is mandatory?

When you were a new mom, whether it was your first or you had others before, did you like people coming to your house? You may not have minded it, but with Early Intervention it's almost every day! That means almost every day you have to have your house clean! There is speech, PT, OT, Special Ed, D/HH, they all come for an hour per week.

Now throw in (in our case) and average of 3 doctor visits per week. These are not just visits to the pediatrician (who the heck is that anyway?) but specialists. Yes, its the ists that run our life. Cardiologist, Gastroenterologist, Endochrinologist, Pulmonologist, Orthopedist, Opthalmologist, Anesthesiologist, Radiolgist, Neruologist, and then some others like a surgeon, pediatrician, etc. In my daughter's first three months of life, she saw every one of these specialists on a regular basis. By one year of age, she had seen some of them far too many times for any tiny baby!

There are also meetings. Oh the meetings! IFSP's they're called, and they cause us parents much distress! I bet you have no idea how upset we become when an assessment of our child's skills has just been handed to us. We may not cry right then and there. Some of use have gotten good at hiding our tears. Instead we wait until later, alone in the bathroom (if we're lucky enough to have a lock on the door!) and we let the tears fall. We read the reports again and again. Not because we were in denial before, because honestly, we know exactly every little thing our child can and cannot do, but because seeing it in writing makes it real! Seeing in writing that our child is 2 years behind in one area or another is like getting punched in the stomach, and then whacked over the head with a 2x4, only it takes longer to recover.

So the Early Intervention schedule keeps up the pace until age 3 when that little tiny being goes off, on a bus, to school! School at age 3! On a bus! However, the other junk..all the ists, did not change. They're still there, it's just that now I have to call someone to say my child won't be in school today because today we're seeing of of the ists. LOL Some parents choose to work outside the home at this time, because they are under the false impression that things will slow down a bit. Silly them.

Along comes Kindergarten. The same specialists are still in their place, the only difference is the IFSP has now turned to an IEP and is more scary, because now this is real school! Now we have a new problem. We have think of things like mainstreaming, inclusion, resource rooms, FAPE. It seems that we spend a lot of energy fighting for the things our child needs. Unfortunately in the US, you're in the minority if your child is automatically included in the mainstream classroom. Isn't that sad?

Did I mention in all of this there are other children who need me too? As my friend Michelle so wonderfully said it, "They're hanging on for dear life in the shadow of her." Because yes, it's hard not to get lost among the ists and the schools, and the meetings, and the surgeries, and the occasional nap.

So when your field trip slip doesn't come back, or homework isn't done, don't assume the parent is uninvolved. Assume, instead, that she is exhausted and just plain didn't have the energy to remember one seemingly small detail.

PS. My daughter's teacher just called. Seems I forgot to put her almost invisible hearing aids on her this morning. Go figure 

I think this post is about do for a re-write because I just added two more kids and more "ists" than I can count. If I was sucking at getting forms done before, well...send me to bad mom jail now because I can guarantee this did NOT improve.


Anna said...

This is an awesome post. So so true. I had no idea what the reality of being Graces mommy would feel and look like. I knew what other families with children that had DS looked like on the outside. But the reality. It comes with feelings attached. She had no language when we adopted her, at 4.5 years old. People keep asking us if shes in school or when we will put her in school. Its hard. We missed the first 4.5 years of her life, she is so so far behind that staying home a year or two to have one on one is doing us all some good. I appreciate your wisdom and humor.

Cindy said...

I could relate to this entire post! The 'other' kids getting lost in the shuffle, Beth first hopped on the school bus at 2. I had such guilt about the kids, and the papers and not being able to do it all. It was good for me to read this. Like yea, it was hard but I did my best!

Momtoseven said...

Fantastic Leah!!