Thursday, February 21, 2008

Developmental Evaluation

JT had his 'big' eval done yesterday. It took all day. We went in at 8:45, stayed until 11:30, broke for lunch and went back from 1 until almost 3pm.
We had a wonderful group of professionals. We had a Speech Language Therapist, a child Psychologist, a Social Worker, and a Developmental Pediatrician. They were great with JT, and easy to talk to as a parent. I was very impressed.
We did all kinds of fun things, obviously all which assessed his current levels. They have a new test at Children's Hospital which is exclusively to test for autism and its tendencies. We did that one, too.
At the end, all of the professionals had a 'team meeting', and discussed what (if any) diagnosis they felt he fit.
It took them a total of ten minutes to discuss their results and come get us.
JT has autism. Luckily, NOT apraxia (yay!!!). He scored very low on many of the tests. His communication, both receptive and expressive, were at a 3-5 month old level. His cognitive was at 11 months. His fine motor was around 18 months. His gross motor was at 24 months. While the gross motor looks good, it's STILL concerning because 6 months ago he tested at a 30 month level... Obviously he has regressed. Hopefully it's nothing, but they, too, suggest an EEG to rule out seizures. They don't think he's having them, it's more to rule them out than anything, and it is completely possible.
Just for informational purposes, I wanted to know where they thought he was on the spectrum. They feel he is moderate. I totally agree with that...
Anyway, glad it's over, now time to move forward!

Monday, February 18, 2008

New Writing Jobs

Woohoo! I got two new writing gigs through my current job.

The cool news? I get my own byline and photo on both!

I am SO excited!

Still waiting on the good word as to where we move...

Thursday, February 14, 2008

To You, My Sisters

To You, My Sisters
by Maureen K. Higgins -
Many of you I have never even met face to face, but I've searched you out every day.
I've looked for you on the Internet, on playgrounds and in grocery stores.
I've become an expert at identifying you.
You are well worn.
You are stronger than you ever wanted to be.
Your words ring experience, experience you culled with your very heart and soul.
You are compassionate beyond the expectations of this world.
You are my "sisters."
Yes, you and I, my friend, are sisters in a sorority.
A very elite sorority.
We are special.
Just like any other sorority, we were chosen to be members.
Some of us were invited to join immediately, some not for months or even years.
Some of us even tried to refuse membership, but to no avail.
We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds.
We were initiated with somber telephone calls, consultations, evaluations, bloodtests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common.
One day things were fine.
We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler.
Yes, one minute everything was fine.
Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed.
Something wasn't quite right.
Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children's special needs.
Some of our children undergo chemotherapy.
Some need respirators and ventilators.
Some are unable to talk, some are unable to walk.
Some eat through feeding tubes.
Some live in a different world.
We do not discriminate against those mothers whose children's needs are not as"special" as our child's.
We have mutual respect and empathy for all the women who walk in our shoes.
We are knowledgeable.
We have educated ourselves with whatever materials we could find.
We know "the"specialists in the field.
We know "the" neurologists,"the" hospitals, "the" wonder drugs, "the" treatments.
We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them.
Without formal education, we could become board certified in neurology, endocrinology, and psychology.
We have taken on our insurance companies and schoolboards to get what our children need to survive, and to flourish.
We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy.
We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects.
We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that means walking away from it.
We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line.
We have tolerated inane suggestions and home remedies from well-meaning strangers.
We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.
We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother".
We keep them by our bedside and read and reread them during our toughest hours.
We have coped with holidays.
We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas.
We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving.
We have bought white chocolate bunnies for Easter.
And all the while, we have tried to create a festive atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.
We've mourned the fact that we never got to relax and sip red wine in Italy.
We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent.
And we've mourned because we left for the airport without most of the things we needed for the trip.
But we, sisters, we keep the faith always.
We never stop believing.
Our love for our special children and our belief in all that they will achieve in life knows no bounds.
We dream of them scoring touchdowns and extra points and home runs.
We visualize them running sprints and marathons.
We dream of them planting vegetable seeds, riding horses and chopping down trees.
We hear their angelic voices singing Christmas carols.
We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall.
We are amazed at the Audrey of their pirouettes.
We never, never stop believing in all they will accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children,reach for the stars.

Wednesday, February 13, 2008

Happy Birthday The Hubs!

To the most wonderful hubby in the world... Happy birthday!

I am so very lucky to have you as a husband. You are truly the best thing that has ever happened to me.

You are my husband, my best friend, and my inspiration.

Tuesday, February 12, 2008

Things I've Learned from Staying at Home

  • Kids poop and pee WAY more than they get credit for.
  • Getting 1 kid to nap on a schedule is amazing. Any more than that you need divine intervention.
  • There are about a billion places for kids to hide... Leave them alone for two minutes to find out.
  • Kids are way smarter than adults think. They're just waiting for the moment to unleash it. When they do, it's almost never in a way that adults consider constructive, and usually ends up in a giant mess or something broken.
  • Never teach kids things before they ask. Genitalia, and sex information are things to NEVER teach a kid until they are old enough to know how to keep their mouths shut.
  • When a child asks you a question that is going to result in a thousand more questions if you answer it truthfully, lie. Lie, lie, lie. Seriously, because it will save you at least 30 minutes of your life you will not get back. Consider it a favor.
  • Buy toys that a kid can play with on their own. I hate: dolls that have to be dressed, barbies, paints, and anything else that I constantly have to supervise. A sure-fire way to get on my sh!t list is to buy one of these gifts for my child.
  • When a child wants to 'help', just let them do it. They end up crying for longer than it would take to just let them touch whatever it is.
  • If the kids are being quiet, they are DEFINITELY tearing something up. Probably something really important. Kids can sense this and immediately are drawn to necessary objects for the sole purpose of DESTROYING them.
  • If in doubt, always go with the option that will lead to the most quiet and happy outcome.

Sunday, February 10, 2008

For JT

mom i know you fight for me

even when times are tough

mom i see your love for me

even when things get rough

mom i know you cry sometimes

even though you're strong

mom i know you hear them talk

and know we'll prove them wrong

mom i know you want from me

a simple hug or kiss

mom i hope you know

my love is more than this

mom i know you can't understand

some of the things i do

but mom i hope you know inside

my best friend will always be you


loving someone unconditionally

hearing what isn't spoken

giving completely and unselfishly

accepting someone completely for who they are

There Are Going to be Bad Days...

Well, we had been thrilled with JT's progress. It seemed like he was learning new words - tons of them! - daily.
Then I started noticing... Why wasn't he using them more than a day? Or a few hours? It's like he just 'lost' his words. I was dumbfounded. I mean, if he can say it, he can say it, right??
Wrong. One of my buddies on my autism support board on BabyCenter mentioned that JT sounded like he had what her daughter had. Dyspraxia. So, I went and researched it. It explains the language, and more.

There is verbal dyspraxia, which is definitely what JT has going on. But apraxia can also affect other areas, such as motor. It has the same basic root - lack of ability for motor planning. JT has problems with his perioceptive abilities - which means he doesn't really know where he is in relation to things... For example, JT likes to go under tables, rather than around. He's been under our kitchen table fifty billion times. However, he hits his head 9 times out of 10 coming out the other side. The one time he doesn't he ducks until he's five feet out... So he never knows where he is in relation to other objects... That's just one example. The kid is covered in bruises from these types of incidents.

We've also had a rough week in general. JT's new idea of fun is knocking all decorations off the walls. He's always loved to clear tables, and now it has spread to other arenas. The Hubs and I always joke that he hates order, and it's his way of 'fixing' it his way. He broke a plate hanging on the wall and has discovered many ways to knock several other paintings down. It's exhausting trying to keep up with him when all he does is destroy!

Then today, he figured out how to open the child proofed door to the outside. Mind you, he can't open a 'normal' door, but can open the fixed ones. Then, he went back into our bathroom while The Hubs was doing dishes. In the two minutes he was unsupervised (he's 2 - he should be able to be alone watching Dora for five minutes!!!) he climbed up on the bathroom counter, stuffed toilet paper down the sink drain, turned on the faucet full blast and flooded our bathroom. So, all of our towels (read: ALL OF OUR TOWELS - LIKE 15 OF THEM) were used to clean up the flood, and are currently in the dryer.

Tomorrow will be a new day, and the start of a new week. Hopefully, it will be better... For all of us!

It's just so disheartening that for so long, we thought he was doing SO well - only to find out he's not retaining any of the information! And the apraxia requires MORE therapy for his speech, and he's still only at a 12 month level or less... Ugh.

The good news is, his team assessment is a week from Wednesday (February 20th), so at least I have something else for them to help them out.