Wednesday, October 17, 2012

The Village

It takes a village to raise a child. -African proverb

Our kids spent the summer dancing with excitement about going to school.  Every single time we passed by the parish school (which is next to our church, so we drive by it a lot), there was the notation that there was the school, followed by a few minutes of chatter surrounding going to school, being big kids, etc.  They were uber excited to open birthday presents and find monogrammed backpacks and groovy lunchboxes, and they read their social stories about going to school so much that I had to reinforce the binders with book tape.  By the time the first day of school rolled around, they were so excited that they beat us to the car.

Even now, they are super excited to talk about going to preschool; they pray for their teachers in their nightly prayers and they are chatty on the way home about their day when I pick them up.  Each night, they ask if they are going to school the next day (since they only go 2 days a week the answer is 'no' 5 out of 7 times, lol).

If only wanting to go was a recipe for happy-go-lucky days.

Bobby wants to go with all his little soul.  He gets super excited to get dressed and put on his backpack.  He is now at the point where he climbs out of the car on his own and takes the aide's hand to walk inside.  But, once inside... that's another story.

The school is wonderful.  Like, really great.  The preschool teacher rocks, and the principal is understanding and encouraging.  They truly want the children to succeed and they view each child as an independent child; they dont seem hung up on trying to have every child fit a mold, and really seem to be working to have each child reach their unique potential. Peter and I have met with them and, each time, have walked away with positive feelings. 

Bobby is struggling with preschool.  It would be so easy to just pull him if he was miserable, but he wants to go.  He tells me that he likes it, and he asks to go back.  And that just makes it all the harder. We are now over a month in, and he still cries during the day, struggles to sit during circle time, doesnt want to engage with more than 2 or 3 peers at a time, and has a hard time following instructions for nonpreferred activities. At this point, he is in the classroom with a 1-on-1 TSS.  Although we are working to have this provided through the IU because it is considered a special need based on his speech issues, at present we are responsible for it.  We've interviewed a few folks, but they haven't been what we are looking for.  I went with him a few times; ultimately, I'm not the right person.  It's like having a crutch and never learning to walk.  He might get through the day if I'm there, but he seemed unwilling to try if I wasn't.  So, mom is out.  Primarily, Peter's mom (who is trained and has worked as a TSS in the past) has been working with him, but after a few times, he now is viewing her more as 'grandma' and less as 'aide-to-help-me-get-squared-away'.  Yesterday, Peter went (he, too, has had classroom time but, like having me there, he is still 'dad' and it is more of a crutch and less of a transition tool). 

Yesterday was a great day for him. He did the early playing and the first circle time without assistance; they didnt ask Peter to join him until gym.  Then, Peter left for snack and didnt come in until centers; he was able to leave during centers and then Bobby did the playground without an aide.  By far, one of the best days for him... But still a lot more help needed than the average 3 year old.

I spoke with a friend of ours who is not only a trained ABA therapist but runs a business matching ABA therapists with kids and she feels Bobby would not only greatly benefit from a TSS trained in ABA, but that the school district should be covering the cost (which could run us, privately, up to $6K a month- yeah... I thought I'd choke on my coffee!) Based on his 2 school district evaluations and the private speech eval we had, she said that she has seen kids like Bobby excel and work through their issues so that they can attend primary school on their own.  But early intervention and therapy is key.

Back in the beginning of September, we met with our county IU. Our case manager was nice enough, seemed to legitimately want to help, but also seemed overwhelmed.  The whole "underpaid/overworked" that we all know is true of those working in/with schools. We signed off on having an IEP created for Bobby and discussed his evaluation.  At the time of that meeting, we'd decided to not have a psych eval done and to not pursue interim therapists until after preschool started.  I dont regret that decision; it gave us time to see Bobby in school and to make sure that, indeed, he had needs that needed to be addressed with more than just an SLP once a week.  After meeting with our friend last week, she advised us to sign off and allow the psych eval, not in as much as Bobby might be labeled as this or that, but because it isnt often offered to families.  While legally not having it done cant hinder the services the country provides him, having it done can speed things along.  Our primary reason had been not wanting to have Bobby associate a possible negative experience with his start of school; since we are beyond that now, having him evaluated doesnt carry that weight for us.  Regardless of whether or not he is labeled, if it will help with services, it's something that needs to be done.  She also suggested, as did our pediatrician, that we fill out the paperwork for Medical Assistance so that services could be more easily covered, with no additional cost to us.  (While we dont qualify for MA normally, having a child designated as 'special needs' makes that child eligible so that the State will help cover the cost of therapists, aides, etc).

To date, we have no IEP.  (Yep, more than a month and a half after our meeting and a month+ into school).  I have followed up and was assured via email I'd have one by Monday, the 15th...  We're still waiting for that meeting to discuss a rewrite of the IEP and getting him a TSS for school...  While we're willing to do everything possible to give our kids the best start (and the best life) possible, these things aren't cheap.  If Bobby has a special need that qualifies for services, then, as his parents, I feel like we are required to get in the pile and make sure he is taken care of.

Something needs to be done.  He clearly needs an aide in class with him.  (Even though yesterday was, by far, an awesome day for him- these teachers ROCK.  He had has best day, and he is getting the hang of it, but it is still a struggle for him). His pediatrician saw it as his 3yo check up, our friend saw it based on his assessment and evaluations, his therapist and teachers see the need.  We, as his parents, see the need.  He has an entire village of people working to help him, and we want to make sure that the village is as big as it needs to be for Bobby.

It still amazes me that we arent the only ones.  When I talk to other parents, it blows my mind just how many have a child (or have a relative with a child) like Bobby, and listening to their stories gives me hope that the earlier the intervention, the better.  I see the similiarities especially with premature babies and with the boys in twinsets/multiples. So many people have shared their stories of severe speech delayes and the behavioral problems that arise as a result of being unable to communicate. While people have come out of the woodwork once we have brought it up, it reminds me (almost) of pregnancy loss: no one talks about it. It's as if simply uttering the words special needs child is enough to make people want to drop their voice and lower their eyes.

I get it.  I do.  In fact, as I filled out the paperwork for MA and had to make the notation of special needs, tears jumped into my eyes.  Hearing the pediatrician tell me, with compassion and honesty, that "Bobby needs help.  You need help with him. We can do this together," made me want to break down in her office. No parent wants their perfect child to struggle.  For some, maybe it puts a chink in the 'perfect'. For me, it just makes perfection hard.  Because, make no mistake, my kids are perfect.  A handful, a struggle at times, brilliant, funny, gorgeous, (did I mention a handful????), but perfect all the same.  My perfect and perfect for me.  But, damn, is this tough.

It's a good thing we have the village... I know I wouldn't be able to do this alone.


Brigid said...

Sometimes every day is a struggle, right? I don't know how you manage everything you do...and pull it off looking so easy! (from what I hear from Sarah and read here) Hang in there, you don't have to do it alone = )

Amelia said...

My best friend's son was premature and he struggled as well, especially in preschool.
I am forever thankful for the village we already have, and should G need us to add more? I'd absolutely do the best I could to provide them for her. As you are doing for your son. I can't imagine how stressful this is for you, but I hope you stop and acknowledge your love and efforts are exactly what he needs.

Catherine W said...

Oh Bobby sweetheart. He does share a few traits with my Jess (also extremely premature) at his age and she has got a little better with age. Definitely the speech and socialising aspects have improved. Sitting down and following instructions not so much!

It sounds like you are putting everything in place to help in. And, I agree, it is a taboo. Every parent in the playground must have suspected that something is a little different about Jessica. She still isn't toilet trained, her speech is still quite difficult to understand, she coughs and coughs until she is sick and I feel like everyone is looking and wondering but nobody ever asks.

I think I love your paediatrician. And yes, our children are always, always perfect in the eyes of their mothers.