Monday, March 10, 2008

Things are looking brighter this week

Life with a special needs child is often a series of ups and downs. The past few weeks were one of the downs. This week we seem to be back on the upswing again. It's often like that - sometimes it's two steps forward and one step back, other times it's one step forward and 374 steps back. At least that's how it feels when you're down deep in the trenches.

The meeting at Maya's preschool was difficult, but better than expected. The smartest thing we did was to bring Maya's psychologist with us to the meeting. As we prepared for a confrontation, Jay realized that perhaps we hadn't shared enough about Maya's issues with the school, that perhaps their seeming utter contempt for her difficulties was born in part out of ignorance rather than general asshattedness (yes, that's a word. I just made it up. Funny, my spellcheck doesn't like it.) L (the psychologist who's been working with Maya every week for a year now) was able to present Maya's issues to the director and the teacher in a much more objective, dispassionate manner, which gave her the credibility that we as parents lack. She couldn't be seen as just making excuses for poor behavior the way we could.

As we spoke, it became clear that the teacher himself knew almost nothing of this (I can't believe they didn't fill him in better). The director knew some, but she had reached a number of her own very erroneous conclusions which were really coloring her response to Maya, and had probably infected the rest of the staff as well. By seeing her as manipulative rather than overwhelmed and overstimulated, she was responding in ways that are not at all appropriate to Maya. This is the same woman who flat out told me that I would be doing Maya a tremendous disservice by putting her into a special needs kindergarten (where she would have a maximum class size of 12 instead of 36, where she'd get all the support services she needs, and where EVERY SINGLE PROFESSIONAL involved in evaluating or treating her agreed that she needed to be) and tried to make me feel like an incompetent parent for choosing that path. (No, not going there, I'll just get aggravated all over again.) Because Maya has a tremendous range of function - from extremely high to much lower - appearances are often deceiving. If you see her at a high functioning moment, as she often is for things like circle time, you would be hard pressed to see her as a child needing any kind of support or accommodations, whereas if you looked at longer periods of time her challenges would be obvious. The director was basically looking at a very small slice of "Maya" and basing all of her interactions on that. Unfortunately for Maya, that sample is not representative.

Once faced with the reality of Maya's special needs, which include severe anxiety issues and difficulties with change (hello, new teacher! The director had been claiming that "it's been a month, she should have adjusted by now, therefore this behavior is simply bad behavior. Mama bear claws coming out now...), sensory processing difficulties, and major challenges with expressive language (the ability to have a normal two-sided conversation, as opposed to the ability to physically make the sounds) she was forced to admit that perhaps she'd been taking the wrong approach with Maya, judging her unfairly and holding her to a standard that she is not capable of right now.

We spent about 90 minutes there, talking both about where Maya is now and about practical means of helping her. I also had a light bulb moment when the director told me (for the first time) that the worst of her tantrums were coming at about 3pm, and that during those episodes there was no reaching her. The director tried to force me into letting them have her nap again. My response? Over my dead body. She's nearly 4.5, she does NOT need a nap and hasn't been napping at home for over a year and a half. Without the nap she's going to bed at 9:30 or 10, with the nap it was often after midnight! No way no how am I agreeing to a nap. The director tried to insist that her behavior was the result of "cumulative fatigue" (my ass it was!). Of course her behavior was ratty, she was more than likely starving by 3, which would just about guarantee a severe breakdown. With all of Maya's food issues, she often ends up eating nothing but carbohydrates for lunch. All that rice or pasta is fine for giving her a quick energy boost, but then sets her up for a major crash a few hours later. I asked them to give her a piece of fruit or other healthy snack while the rest of the class is napping.

Knock on wood and positive thoughts to any deities you may or may not believe in, there's been a huge improvement in her behavior so far this week. I don't know whether it's the snack or whether it's an improved attitude on the part of the staff now that they have a better understanding of why Maya behaves the way she sometimes does, or even whether she's just finally adjusting to the new teacher, but things this week are on a very much needed upswing.

We're still in the middle of evaluations, but the official diagnosis is now looking like a psychological, as opposed to neurological, one. After countless rounds of testing they have finally ruled out PDD (the autism spectrum). Maya has a number of traits in common with PDD, but hers they now believe stem from anxiety and SPD. They did refer her for an EEG and bloodwork, but that is mainly to rule things out. None of this really means anything in terms of what therapies she needs or how to treat her, but it does mean that they're more optimistic about the long-term. They were particularly encouraged to see that she is using more meaningful, symbolic play than she was 6 months ago.

Oh, and she aced her speech evaluation today. As always, there's still a long way to go, but she's moving in the right direction again, and with that I feel as if a 4-ton weight has been lifted off of my chest, at least until the next low when it will come crashing back down again.
For now though, things are good and my sweet loving girl is back.

And another one for the "life is good" file - after a three week illness plagued delay, Jay and I are finally going away tomorrow. We'll be gone for two nights and will not be bringing a computer. Catch you all on Thursday.


Unknown said...

aw...i hope maya continues to get better. and that all these tests will get you some answers. hang in there!

Susan Helene Gottfried said...

Travel safe, babe.

And mazel tov on the news. Smart thinking to bring the outside help, too.

Amanda said...

I think you're a really great mom.

Your concern really shows though your writing about Maya. What a great decision to bring her therapist along for the meeting--obviously that helped bolster your position and kept the school from trying to bully you into decisions that don't work for your child.

A family member of mine has a special needs child and seems to constantly be fighting with the school! I'll be suggesting to her to bring her son's therapist to a meeting with the school.

Claremont First Ward said...

Have a wonderful little "trip" away. I'm so glad the meeting went better than expected. I really enjoy your writing and your ability to convey all the things that you do.

Julia Phillips Smith said...

Yes, I think it was a stroke of brilliance to bring the psychologist with you. The new understanding on the part of the staff, the mid-afternoon snack - all the little things turn into a lot of big things after awhile.

My husband has bipolar disorder, and we have learned over the years how to ride the rollercoaster with much less thrills and spills. It doesn't stop the dips and twists, but we know what to expect and are strapped in, so to speak. Things will work out for you and Maya because you're interested in addressing things right away, before they turn into something they don't have to be.

Totallyscrappy said...

I teach kindergarten in a preschool setting and what great news that you are making headway with your child's teacher and the best practices for your daughter.
Thanks for stopping by my blog and suggesting a good book to read. I've also read My Sister's Keeper and I was surprised by the ending. In fact, the whole time I was reading the book I kept thinking, "What is everyone raving about?" Oh, the ending is what they are all raving about.

Shannon said...

Yay all around! So glad Maya is doing better and that your meeting went so well. Sometimes good communication makes all the difference! I know how anxious you were about that meeting so congrats on a positive outcome!

Definitely sending lots of positive thoughts and prayer for continued forward progress. And have a WONDERFUL time!! YOu so deserve it!

Fairly Odd Mother said...

So glad you are getting the support you need on all ends. And so glad this will all be for the benefit of Maya!

Have a great trip!

Amy said...

I'm so glad that your school people have been enlightened. It is frustrating when dealing with those "in charge" of your kids all day long when they don't hear what you're saying to them. They listen to the words, but they don't let it sink into their brain - too quick to assume mommy is just trying to shelter daughter from any and all discomfort!!!

Enjoy your couple of days "unplugged".

Unknown said...

You said:

sensory processing difficulties, and major challenges with expressive language (the ability to have a normal two-sided conversation, as opposed to the ability to physically make the sounds

DING DING DING! This is a key description that almost exactly matches my daughter (now 15.5) at that age. If they were thinking PPD, or even Aspergers, and sensory issues, MAKE SURE that they test her for NVLD. You're descibing a NVLD kid almost to a 't' with the conversation pathology.

Nobody EVER thinks of NVLD. It's not a popular diagnosis, and most people know nothing about it, but I swear it, you totally hit the nail on the head with that conversation piece. Look into it and see if she fits some of the categories. My child has the communication piece wicked bad, but not the physical piece. And it does NOT improve with age. It's horribly frustrating for the kids, who think they say things they don't, and only understand about 30% of what is actually being said to them!

L D said...

Great to hear the news, Robin! I have my hands full enough with one high-energy child--I couldn't imagine how busy I'd be with a special needs one! I think you're doing a wonderful job with both your babies, and GOOD FOR YOU for sticking it to the director and teacher. Poo on them for questioning your awesome parenting skills!

Reiza said...

Oh wow! I'm in awe that you've been able to deal with so much from the school. It sounds like bringing reinforcements along with you was a great idea. I'm so happy to hear that things are looking up.

Although, I want to smack that director for you.

Pieces of Me said...

Good for you and the changing front.

I'm glad you brought the psychologist with you. That was a very smart smart move. I said 'yoetzet' to include therapist as well -

Nancy said...

Such a roller coaster for all of you. I'm glad Maya's psychologist was there to present things that were discounted before. I wish the best for Maya, she's blessed to have you as her mom.

Enjoy the couple day downtime!

Phyllis Sommer said...

i'm so glad that you had a productive meeting with the school...and i'm so so so glad that you're finally getting away. have a great time! blogland will be here when you get back:-)

Anonymous said...

Words can't express how happy I am for you. Good things are going to happen for Maya and your hard work is the reason why. I'm so happy for you. :)

Christine said...

I'm really glad things are looking up for brilliant of you to take her psychologist!

Enjoy your mini-vacay!

Anonymous said...

Fabulous thrilled for you. Hugs,


Anonymous said...

Robin, I feel like you're talking about Jacob. Whoa! I'm getting ready to write my own post this week about our latest issues with the school, but Maya's mid-day troubles mimic Jacob's. Do you all have Carnation Instant Breakfast? That's one of the only things that Jacob will eat at school. Once again, he's sworn off peanut butter, and a banana is the only piece of fruit he will consider nibbling on. Up until I began sending the CIB, his teachers had all commented about how lifeless he seemed (he was basically starving by the end of the day).

I think it's awesome that Maya's therapist was able to be with you. WOW!

Janet said...

I don't have kids, but it sounds to me as if you're handling this extremely well.

Have a GREAT getaway!

Unknown said...

I just want to commend you on obviously always doing what is best for you and your family. It's sometimes so much easier to let other people in your child's life push you around and I think it's wonderful that you're willing to go the distance for your kids.

That's not always easy to do.

Enjoy your time away and enjoy this period of ups with Maya. :)

kristi said...

Goodness...I think it is wonderful that your therapist was able to come many people don't understand your child like you. Some days, I think my son's teacher just feels he is BAD.

Mom not Mum (Sandy) said...

wonderful that they are finally listening and making changes!!

Anonymous said...

Fabulous news babe, fabulous news. Makes my heart sing just reading it.


Lea said...

Robin, what you share here is so important... and you are such a great mom.

Have a wonderful time away and will see you when you are back, cyber-see you that is!!!!