Lots of words about why I'm not writing much

If you'd asked me three years ago why I was starting a blog, I would have definitely said that I wanted to capture some of the stories of my girls' childhood.  But I also envisioned that I'd turn to the blog in times of stress, when I needed to write things out in order to work through them.  In college I filled notebook after notebook with scrawled script, drawings, and other therapeutic scribbles -- it kept me from the breaking point when school or social life pressures got out of hand.

But for some reason, I am now clamming up here on the blog when I'm most stressed.  In fact, since I started my current job last May, my blog output here has declined considerably.  Thinking back, although my previous job was no picnic, it did allow a certain work-life balance that I have not enjoyed in the current position.  These days I'm not too happy at work, which drains my energy and creativity and makes me feel like I'm always whining when I do sit down to write.

And then there is the other big stressor: our ongoing struggles to help Rosie.  Although I haven't written about it since the diagnosis post, it's been constantly on my mind.  What I didn't say in that previous post is that the developmental pediatrician recommended that we get Rosie re-evaluated by our county in order to expand her current services from just speech to a set of broader things.  Specifically, the doctor thought it would be best to have Rosie approved for a spot in our district's special education preschool.  J and I were a bit surprised and alarmed by this finding at first, but the doctor explained that professionals trained in integrated special education services would be best able to assist Rosie with her specific developmental needs. 

We jumped through hoops to facilitate the evaluation process with our county -- provided them with the pediatricians' assessment, talked at length with our speech-language therapist, arranged for the county rep to visit day care (because it's out-of-county for them this required extra permission from us and from the day care).  It took forever and a day for the actual day care visit to take place, but when it actually happened J and I were optimistic that we'd gotten that particular hurdle out of the way.  Based on a teacher's report, we figured that the county rep had seen Rosie's true form: some compliant behavior, some distractedness (not sitting still during group activities), and at least one tantrum.

So last week we got the word from the county.  The speech-language pathologist basically blew off the entire report and its concerns -- she said Rosie was doing just fine in her current class, with no concerns evident.  When pressed, she admitted that she hadn't realized Rosie (at 3 1/2) was in a room full of two year olds, but that didn't sway her opinion or the official view of the county.  Sounds like they are willing to add a social goal to her speech IEP, but that's about it.

I have to admit, my very immediate reaction to the SLP's report was relief.  So maybe this is all overblown, and we were spun up by the pediatrician for no reason.  But then reality set back in and I was pissed.  Basically the county is not even acknowledging that there is ANY developmental concern besides speech.  I understand if they don't feel she would benefit from being in the special ed preschool, since the goal of special education is to achieve the "least restrictive environment" -- but it would be nice if the county would at least acknowledge that there is more than just speech delay at work here.

Because yeah.  As tempting as it is for me to put my hands over my ears and chant "la la la, this isn't happening" -- everything the pediatrician noted in her report about Rosie has been spot on.  And for some reason, some of the most pronounced behaviors are seeming to get worse.  One of the things that the doctor noted is that Rosie has trouble with self-regulation: she gets very excited and hyper one minute, upset and then nearly hysterical the next. 

For example, Rosie gets STUCK on certain things.  We had literally a 45-minute standoff Friday night because Rosie wanted to play with playdoh right before bedtime and I would not let her.  She was screaming so loudly that I text-messaged J at the hockey game to warn him not to be surprised if the neighbors called the police to report that I was abusing her.  I tried reason, I tried threats.  I tried time-outs, I tried distraction and redirection.  I tried ignoring her, I tried holding her.  Finally she was just so exhausted that she collapsed in a heap and I was able to rub her back and get her calmed down.  Poor Mimi had to sit by this entire time while I dealt with Rosie. 

So although we will get no help from the county, J and I are going to find a way to get Rosie the help she needs.  We just don't know exactly what kind of help that is, not yet.  I've ordered about 20 new books from Amazon and I've read web sites until my eyes are about to fall out of my head, but of course everyone has a different perspective on treating autism (and we aren't even sure exactly what type of autism we're talking about at this point).  We'll be working closely with her day care and we will see what other services we can find.  But I feel like I'm getting ready to travel to a new country where I don't speak a single word, but I'll be expected to give a fluent discussion on air compressors or some other bizarre and technical thing.   This is a whole new world we're entering.

Anyway, that's what's been going on.  I find it ironic that I just wrote about a gazillion words describing why I haven't felt like writing lately.  Brilliant. 

Comments

[Mad]

That is a LOT of stress on your plate, Nancy. Be well and remember to take care of yourself too.

[PunditMom]

I'm sorry things are so hard right now. From what I've read, the IEP people do their best to try to put roadblocks in the way because of the cost to the school system. Any chance the pediatrician can step in more to help?

Big hugs for everyone there.

[Amy]

Hey there old friend. I'm sorry it's been so difficult with Rosie--I know from personal experience that just making all the appointments and scheduling everything is incredibly stressful. And then there's the diagnoses on top of it, and the worry, and the help/no help from the county and every other concerned or involved entity. It's a lot, like the previous commenter said. I'm thinking about you a lot, and--even though this isn't exaclty a happy happy joy joy post--I'm glad you're writing again.

[M&Co.]

I'm sorry. I know how frustrating all this is.

[Suzie]

So sorry that this process is so tough for you guys. I wish that there was a clearer path, but it sounds like you need to fight for what R needs. We were able to add a goal to one of our kiddos' IEPs that covered some of his sensory stuff, and no one even blinked, but I think we're in a different district than you guys. Anyway, keep pushing and advocating - it sounds like you are her only voice in all of this. Hugs to you guys!

[Mari]

Ditto to PunditMom. I really hate to betray my career of choice, but often times the most frustrating thing as a teacher is to watch the IEP committee say, "No significant discrepancy. No need for services." Last year, I had a boy who was privately assessed leave my private school because they felt he now qualified for services. Denied. I have a student currently who is in a similar situation...assessed by multiple private psychologists who identify learning issues involving memory and processing issues. Yet all the IEP committee feels he qualifies for is speech therapy.

Just keep standing up for whatever you decide is best for Rosie, and keep burning any aggression at those CAPS games.

I'm thinking good thoughts for you. They involve chocolate, cheesy 80s music, and lots and lots of visions of hot men in jeans with no shirts.

[ozma]

I do that also--don't write when things are really bad.

I'm so sorry you are not getting the support you need. From the little I know, a huge, huge part of the stress of having a kid with special needs is navigating the system. It's so unfair. Why do they even have help if they make it so hard for people to use it? It's criminal, actually.

Just reading the story about the screaming...My heart really ached for you. It hurts so much when your kid is in distress and there is nothing you can do.

I wish I could offer some genuine words of comfort. All I can say is that I am thinking of you and it sounds so hard and I wish it were not like this. And that I'll be thinking about you. For real. And when I am on the internet, I will try to come back to see what you say. So please do write if you think it will help. I want to read what you say.

[Kimberly]

Wow, you are so strong Nancy. I know you will find the right solution - and the right fit for Rosie. Hang in there and don't forget to ask for help.

I'm thinking of you and your sweet girls.
xo

[jess]

Hang in there. I wish I could help, but am clueless. Still, thinking about you guys a lot.

[mamatulip]

Sending you big hugs and lots of strength. Sometimes it's good just to vent and get it off your chest - and if that's what your blog is for nowadays, so be it. It's YOUR blog.

Hang in there, girl, and I'm always here if you want to blow off any additional steam. :)

[mayberry]

Of course you're not writing -- you're working like three full-time jobs! Lots of love and let us know how you are doing when you can.

[Amie]

Just had to come with big hugs.

[Jamie]

Take care of yourself and your family. Sending you a big big hug. You've got so much going on Nancy, the blog thing can wait. We will be here waiting when you can update us.

Take care!

[Stephanie]

I just want you to know, that no matter how often you write, I think of your family often. Sending big hugs your way.

[Motherhood Uncensored]

I'm thinking about you Nancy. I imagine it's tough to write about.

[Heather]

Been thinking about you and wondering how you are. It's tough having to be anyone's strongest advocate, and harder still when it seems like a system is stacked to do the minimum and you have to constantly push for more. Lots of love and support to you and the family.

[Mignon]

What ozma and mayberry said. If you're not writing as an outlet, I hope you have something else, at least. Take care of yourself, Nancy.

[Stimey]

It is so tough to enter the special ed world. There is so much to learn and so much is in dispute that it's hard to know what's right for you child. Just trust your instincts, hope for the best, and be prepared to fight if you don't get it. Love to you...

[Suebob]

I wish I could make it all better.

[Julie]

Oh Nancy. No wonder you aren't writing.

Lots of love to you, J, Mimi, and especially Rosie.

[Meg]

Nancy, we must be soul sisters or something. We are dealing with the same rigamarole with an IEP, except ours is for our oldest son, who had a stroke 2 years ago. And he has problems now in school that we mostly think we'd be dealing with regardless, but because of the X factor, we're not certain. It takes patience and diligence to make these arrangements work the way you want them to. And frankly, dealing with the team at our son's school has been mostly a positive experience in that we are impressed with everyone on the team (TEAM!!!), but when you think about how many other kids with issues they have to manage? I dunno how they do it.

Sometime there must be wine and kleenex and a big venting of frustrations and emotions. Don't you think??

[Sarah, Goon Squad Sarah]

I find that it is always difficult to keep up this time of year.

Not that it helps...

I'm thinking about you. And Rosie.

[Sarah, Goon Squad Sarah]

I find that it is always difficult to keep up this time of year.

Not that it helps...

I'm thinking about you. And Rosie.
And the Caps.

[JessicaAPISS]

This must be so hard, but I completely admire the active, informed role you are taking for your child amidst all the uncertainties.

Love to you and your family.

[Robin]

Doesn't a social goal have to be in a social setting in order to do it? And, I know there needs to be an educational impact in order to get services (even with a medical diagnosis), BUT..... Did her current daycare express any behavior concerns to the county?

Whenever you want to get together (remember - I'm just 10 min away) we can and I can help navigate you to this new world. I know how overwhelming it can be.

[deb]

i love you, N. i think you're wonderful.

i wish i could help somehow, but because i can't do much, i can at least tell you (true) things about your wonderfulness.

also, you're a kick-ass dancer. *this* I KNOW. ;p

xoxooxoxox

[deb]

i love you, N. i think you're wonderful.

i wish i could help somehow, but because i can't do much, i can at least tell you (true) things about your wonderfulness.

like, that you're a kick-ass dancer. *this* I KNOW. ;p

xoxooxoxox

[jen from boston]

wait, Nance isa kick ass dancer? see, this I did not know.

Anyway, I wish I was closer - I'd come by w/a bottle of wine in hand (or you know, handful of Xanax) and play dance dance revolution or something.

Thinking of you - you're doing a great job, even if you're not fluent in Flemish (I love that there is a language call "Flemish")

[Selfmademom]

Sometimes you have to rant just to make yourself calm. It doesn't matter about the writing, what matters is to do what makes you feel better. Hang in there.

[washwords]

I do hope you'll keep writing, whenever and however you can. You do so beautifully and capture how hard this must be for you and your family, but how much love and hope and pure desire to do right by your little girl. I don't know you at all but all that comes through and I have total faith you'll get rosie what she needs. I'm also going to send this to my mom who worked for years helping families of handicapped children find services and schooling etc. in upstate ny but still... maybe she'll have some thoughts. Rosie and Mimi are lucky girls (with great names)! Hang in there. - j/washwords

[washwords]

I do hope you'll keep writing, whenever and however you can. You do so beautifully and capture how hard this must be for you and your family, but how much love and hope and pure desire to do right by your little girl. I don't know you at all but all that comes through and I have total faith you'll get rosie what she needs. I'm also going to send this to my mom who worked for years helping families of handicapped children find services and schooling etc. in upstate ny but still... maybe she'll have some thoughts. Rosie and Mimi are lucky girls (with great names)! Hang in there. - j/washwords

[the stefanie formerly known as stefanierj]

Oh, Nancy. I've been trying to catch up a little here and there and to read about what's been happening to you is both heartbreaking and inspiring...heartbreaking to hear that once you finally accepted the diagnosis from the superpede, the county won't help. Inspiring because you always kick this crap in the nuts anyway. I heart you to bits and I have missed you like you wouldn't believe...

[Heidi]

I've been thinking about you. I'm so sorry that you have to go through all of this crap, and I completely understand the not writing when you most need to. Like everyone else, I hope you have another outlet.

[whymommy]

I've heard so much about the trouble with IEPs and county approval for services in our area ... I have no advice, but you have all my best wishes for an easy and appropriate resolution.