Monday, March 29, 2010

Challenges

Sometimes, I have trouble deciding if something is BS or if it's for real.

Like now. My current dilemma started in early January, when Fly went back to preschool after the Christmas break. But really, I guess, it started long before then.

His preschool teacher said by halfway through the school year, most kids have settled into the routine and what's expected of them. But not Fly. He doesn't want to participate in class. He knocks things on the floor on purpose. He won't sit down for story time. He hits his classmates. He goes to a religious school, and they won't take him to chapel anymore unless I go too because they can't handle him and he is too disruptive for the other kids. The teacher suggested he get tested by a free program run by the county school board. "Parent to parent," she said, "I would want to know if he has a developmental delay."

Fly? Developmentally delayed? The child who knows more about trains than anyone I know. Who keeps asking to learn to play the violin. Who uses four-syllable words on a regular basis.

And yet ... I recognized his impulsive and often out-of-control behavior.

Warily and wearily, I scheduled a testing appointment.

I also got great advice via Twitter from Jodifur, who had similar school conferences with her son. On her recommendation, I also got an appointment for Fly with a developmental pediatrician.

I even had food allergy tests run for Fly.

These appointments have taken us on a bumpy, frustrating, time-consuming and expensive ride through the first quarter of this year to where we are now. Which, well, frankly, I don't know where exactly we are.

The school board testing, in my opinion, was a joke, and I told the preschool that. They thought that was "interesting" and said they wanted to "chat more" about why I was so unimpressed with the program.

The developmental pediatrician was more helpful but very stern and very expensive. But at least, that route led us to occupational therapy, where Fly has been diagnosed with a sensory processing or sensory integration disorder and low muscle tone -- reasons, or excuses, for why he rarely remains still, why he can't hold a crayon and color for more than three seconds, and why he's so uncoordinated that he is always running into things, tripping on his own feet and can't pedal a tricycle yet.

I get that Fly "has challenges." I have blogged before about his intense, high-need, high-energy personality, which he has had since he was a baby. It's not uncommon for people to tell me, "Boy, I thought my kid had a lot of energy, but yours has even more!" This afternoon after quiet time, Fly broke a toy and then hit the Bug and me with it. Twice. Even after timeout for the first time hitting. Then he hit JP at the dinner table, where he can't ever sit still. He can't follow multi-part directions. He asks the same questions repeatedly. He will argue with you and say or do the opposite thing you say just for the sake of doing so. I could go on.

But, big deal. Lots of kids -- normal, healthy kids -- could be described in these same ways, right?

As a mama, I am overwhelmed and bewildered at this array of doctors and therapists that has come into our lives.

I wonder how much of this is just Fly being an active three-year-old boy and how much is a real medical or developmental problem. Obviously, there are areas he needs to work on in the classroom and at home, but I can't believe that Fly is unique in having to work on certain areas -- surely every child has strengths and weaknesses, like adults. Part of me wants to think all the "experts" know what they are talking about, but part of me thinks it's a lot of mumbo-jumbo.

Does having a sensory processing diagnosis mean his teachers will be more understanding now that there is a reason, a label, attached to his seeming bad behavior? Will it be a great early-intervention tool to getting him on track and ready for kindergarten?

Or does a diagnosis mean that educators are too quick to put a stamp on a child and herd him through "the system" to get him to conform? Does it mean that as a parent I've fallen prey to some new-fangled notion that therapists have come up with for excusing bad or weird behavior?

I haven't decided which.

In any case, JP and I want Fly to do well, and the occupational therapy can't be bad for him, so we will try this out for a while and see how it goes. The therapist says after a few sessions, she will come up with things I can do with Fly at home that will help him -- she called it a "sensory diet" -- not food, but activities that will help him. She is also doing exercises that help him focus and help strengthen his muscles. I don't get how a kid who is constantly moving, who plays on the playground and takes soccer class has low muscle tone.

I don't get a lot of this.

But I want Fly to succeed and feel good about himself. I know beyond his sometimes almost-manic behavior and despite the days when he wants to hit everyone, Fly still has a kind and generous heart. He has a spooky-good memory and likes telling jokes (badly). He likes animals and can identify several species of birds. He enjoys music and asks me to sing songs with him, or play specific songs for him. He likes to give hugs. And get hugs.

To get right down to it, he's worth fighting for.

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22 Comments:

Blogger jodifur said...

Thank you for the kind words.

It is going to be ok.

I have two books you should read, the Out of Sync Child, and Sensational Kids, both are terrific.

There is nothing wrong with Fly. And don't be afraid to try a new school. In the end, that was what made the most difference with Michael.

7:09 AM  
Blogger TheAngelForever said...

Sending big hugs your way. When my oldest son was almost two he was still not walking. Daycare finally convinced me to get him tested with Early Intervention. He qualified for PT and was diagnosed with severe low muscle tone. Within weeks of therapy he was finally walking. As they focused on motor skills, his fine motor suffered. After a lot of fighting we were finally able to prove that he needed OT. Fast forward to PreK. We took NHL to a developmental pediatrician. We thought he had sensory issues, but were told it he was impulsive and most of his actions were emotional responses. NHL was declassified before kindergarten, but was able to still qualify for PT and OT because of the low muscle tone. I am proud to say that this yesterday we were told he is not longer going to qualify for OT. I have mixed emotions on this. I am proud, but SO nervous since I fought so long for this. My fear is it could blow up in our face. On the PT side NHL still has weak core strength and will get two group sessions a week in 2nd grade next year.

Please know you are not alone. You are your son's best advocate and in the end you know him the most. Always stick up for what you believe in and if you need anything let me know. I have been on both sides of this as a teacher and parent...the second is oh so much more difficult.

8:48 AM  
Blogger Freckle Face Girl said...

Some things about being a mom are tough. Like you, I would just guess that a lot of it is age & that kids develop different aspects at different speeds. Of course, the occupational therapy can't hurt. Hang in there. I am sure it will all make sense soon or just simply turn out to be nothing too important. :)

10:20 AM  
Blogger Awesome Mom said...

It really is tough to know what things will help and what things are silly. For the longest time I did not do speech therapy with Evan, he already had so much going on and I wanted him to have kid time. Even now it is hard to find a balance between therapy and school and play time. I would try and not worry too much about his activity, he is three after all and three year olds are very busy. I bet he matures out of a lot of it and then you can see if he is still hyperactive when compared to his peers.

10:34 AM  
Blogger Much More Than a Mom said...

Oh, you poor mama. You'll know what's right when you find it. That's my advice as both a teacher and a mom.

11:36 AM  
Blogger groovyoldlady said...

(((((Damselfly)))))

6:06 PM  
Blogger Amanda said...

"Worth fighting for..." damn straight. And you, you are a smaret, strong, amazing woman. He has so many things stacked in his corner. Limitless, friend, limitless.

8:34 PM  
Blogger Andrea said...

That's rough...like you said - it's hard to KNOW what's right sometimes. But if it's any encouragement...I have a 3 year old boy too - and the 3 year old age has been the HARDEST age so far. I've heard it from many moms that the whole 3rd year is often just awful...and somehow by the time they reach 4 they seem to "grow up" a bit. I'm still waiting to see if this is true, but just thought I'd throw this thought out there. Every mom I've talked to says that the "terrible 2's" are nothing compared to the 3's...good luck. And you're right - he is 100% worth fighting for!

8:51 PM  
Blogger Madeline said...

Hugs to you. I'm hesitant to express my opinion because it's a really strong one. I worked with preschoolers teaching art for a few years and was so disheartened by the number of them who were being "diagnosed" with different problems. To be honest I think one of the problems (especially when it comes to boys) is expecting them to act like adults and sit still and follow instructions, etc. Children were created to explore the world around them, but not in the orderly way that we expect them to. Only you can truly know if something is "wrong" with your child, but please don't be swayed by the "experts". Notice that their opinions change with the fads and the times. You are the real expert.
Okay. That's all I'm going to say. Hope it wasn't too much because I could really go on a tangent on this one. Much luck to you!

9:34 PM  
Blogger Heather said...

I have no idea what to say. I have opinions on both sides.

I also know that you are a great mom and will do what is best for your son.

xoxo

9:48 PM  
Blogger Lady M said...

Hugs to you and Fly!

11:09 PM  
Blogger Bloggy Mama said...

What a great post. Thank you for sharing your heart on this one. I am mulling this over, as a teacher, because I hear your fears and have seen how students can really benefit once their "needs" are identified. However, I can also see what you allude to.
Know your heart, know your son and be strong. Thinking of you guys... you're in my thoughts and prayers.

12:26 AM  
Blogger Adventures In Babywearing said...

Oh I'm so sorry. He's only THREE! This is shocking to me- I think people are too quick with these assessments. In my humble opinion.

Steph

12:39 AM  
Blogger Stefan said...

There is more and more research that links many learning and developmental difficulties to poor communication and synchronisation between the two brain halves. An effective way of improving the processing functions in the brain is to listen to specially altered sound or music through headphones as pioneered by Dr. Alfred Tomatis (Tomatis method) and Dr. Guy BĂ©rard (Auditory Integration Training - AIT).

Now there is a new Sound Therapy Programme which has been specifically developed with the aim to improve sensory processing, interhemispheric integration and cognitive functioning and it is entirely free to download and use at home. It has helped many children and adults with a wide range of learning and developmental difficulties, ranging from dyslexia, dyspraxia and attention deficit/hyperactivity disorder to sensory processing disorders and autism. It is not a cure or medical intervention, but a structured training programme that can help alleviate some of the debilitating effects that these conditions can have on speech and physical ability, daily behaviour, emotional well-being and educational or work performance.

Check out the Free Sound Therapy Home Programme from Sensory Activation Solutions. There is no catch, it's absolutely free and most importantly often effective. Find it at: http://www.uk.sascentre.com/uk_free.html.

1:08 AM  
Blogger chelle said...

many hugs! That is so so hard. I know you will find the right path for you and Fly ... Hang in there.

Try to read as much as you can :)

7:54 PM  
Blogger Nicole said...

Ak!!! I have such mixed feelings! I didn't even do preschool AT ALL with my oldest. I had all these ideas about letting kids be kids and they are pushed to learn too soon and blah blah blah. But I'm almost certain that had I sent him to preschool he would've been "active" as well. By kindergarten he has mellowed out-all on his own. He just grew up a little. I think there is too much of a push for kids to grow up too fast. Let them be kids for heaven's sake!

For me most major parenting decisions are made with prayer. (you say he goes to a religious preschool so I assume you are somewhat religious) Thank goodness a loving Heavenly Father wants me to succeed as a parent and I feel He is always there to help guide me when it comes to raising my kids, I just have to ask.

Mother's intuition is real, too. So listen to it. You'll know what to do!

Hugs!!!

9:35 AM  
Blogger leo said...

Great kind words. Everything is going t be okay!
kitchen table

7:35 AM  
Blogger h&b said...

I too am fencesitting - so much to say for each side, and neither is completely right OR wrong, but in the end, go with your gut.

Only from reading you over the years, but Fly always comes across as a handful - in this later years, this will no doubt be in his favour- he is obviously of high intelligence .. I think he just needs to learn how to rope in his energy and control it - it's probably one of those parent/child/together learning scenarios.

Anyway, I hope you don't mind me for speaking out about a boy I know NOTHING about .. but I hear his mama sometimes and she seems tired and fraught and unsure and I HEAR and know that !

I resisted speech therapy 3x until I found the right therapist .. there's a lot of to-and-fro, but yeah, keep working at it. When you find the solution, you will be surprised at how happy *everyone* will be.

And in future years, well, his brain will fund your retirement :p

xx

2:04 AM  
Blogger Fidget said...

im really late on this, but in FL they have preschools provided by the state (take place in local elementary schools) that are devote dto helping kids with delays, SPD, ASD, and the like. Mira began attending one at 3 yrs old and it helped immensely.

Mira is now in 3rd grade, she still has her difficulties but she is a very bright (reading above her grade level and testing above her peers) and passionate learner.

I'm sure you are figuring things out as you feel your way through.

5:50 PM  
Blogger Hip Mom's Guide said...

My heart goes out to you and I'm sorry you've had such a bumpy road this year. I applaud you for reasoning through this, for struggling through the tough stuff to find the right answer for your boy. You're doing the right thing for him--know that, brave girl!

11:47 AM  
Blogger Angie said...

Hi- I just stumbled across your blog but wanted you to know as somebody who supports people with developmental disabilities for a living- you shouldn't worry. I know the people I support have a more severe diagnosis than Fly- but they are amazing, and I'm absolutely sure your son is, and will be, too. You may have to be a super-strong advocate for him in the classroom(not all teachers get it), but what's a momma for? Definitely worth fighting for. :)

11:35 PM  
Blogger Nichole said...

Wow, thanks for sharing that! My daughter just turned 5 and she still has trouble pedaling a tricycle and holding a pencil. She just started kindergarten and uses pencil grippers to help her write properly. I worry about her constantly, and reading your story brings me some comfort. At least there are folks who are aware of things like this and ready to help you adjust your lifestyle to help your child. I'm constantly worried about Eleana's high energy and her inability to do some of the things her peers are doing, or even children younger than her. There's a 3-year-old down the street who scooters like she's in the race of a lifetime and E can barely get going on a scooter.

Thanks for sharing openly! Fly will be just fine, he'll be awesome in fact!

3:43 PM  

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