*Our Story (LONG)

[Guest guest]

Oh boy - where do I start?!? WARNING - I don't know how to write

with brevity!

is our second son, born 3 3/4 years after Jack, our first.

Jack was the exceptional child in every way - walked early, talked

early, spoke sentances with adults at 18 months, etc. He translated

that into an incredible big brother to , and a great role

model.

from day one was challenging - he was a full term, scheduled

c section baby and ended up in teh NICU for 4 days with TTN

(breathing/mucous). He was a voracious nurser, which I continued til

11 months. I went back to work when he was 4 months old and pumped

all day long while in between sales calls and kept that up til the

end, with him bottle feeding more than nursing towards the end. I

had a few bouts of random sickness during that time (strep,

respiratory infection, sinus infection, hemoroid, kidney infection)

and took antiobiotics often, but usually pumped and dumped for the

first 48 hours and then mixed half strength 'meds' milk with 'no

meds' milk for the duration of my rx. I say all this in hindsight bc

of the potential connections with his issues now.

was a wierd combo of a happy baby overall and a toughie. He

always looked at people like they were crazy when cooing and laughing

and giggling at him. I often described him as 'unsettled,' which

just seemed to fit.

He started with the ear infections around 3 months old (taking after

his brother)and went on and off antibiotics for the next year. I

*hated that. I had him evaluated by the ENT at about a year old, in

the hopes he'd do tubes like he had done with Jack . No dice!! From

there the infections were on and off and at about 15-16 months I

started to think that just wasn't speaking well. My husband

and I were watching a video of Jack at about 18 months one day and it

just hit me. I started googling speech delays, and I don't need to

tell any of you, it freaked me out and got me on a path of action. I

called Early INtervention and had him evaluated in late April. By the

time they came, I had myself *convinced* he was going to be dx

autistic, not fully understanding the symptoms/signs and their

respective definitions. The girls who came found him high scoring in

everything but Expressive Speech but not delayed enough to offer

services. They suggested private Speech Therapy. Thankfully my

insurance pays for 60 visits per calendar year, no questions asked

(ongoing evals by the SLP) without referrals for $25 in network. So

we started that late April. We saw progress within a few weeks and

then he finally got his tubes on Friday, June 15th. (By the way, if

anyone needs a *GREAT pediatric ENT, we've got the best, in

Hackensack, NJ) From the very day he got those tubes, we've seen a

tremendous change in in so many ways - socially, cognitively,

expressively, demeanor, discipline, etc. He seemed to " settle " like

never before. Around the time of the tubes, the SLP started talking

about Apraxia with respect to and I dove into research and

came here. I've learned TONS from you ladies and I thank you for

that!

Within the last few weeks I finally started to feel comfortable in

his progress and felt that things were going to be okay here. I

have, however, always waited for the 'other shoe to fall' and perhaps

it is now. The SLP indicated over the past few weeks a few things

she's keeping an eye on and wanted to mention to me - echoalia,

conversational speech/functional speech and some sensory

frustrations. She is researching a special short term language

program for him that is helpful for the first two issues. She has

mentioned PDD a few times, in the context of saying that

sometimes seems *so close* to the line, but has also said that a dx

or label right now is very inappropriate for him without continuous

work.

In the meantime, I've always had this DAN! thing in my head, along

with GFCF and supplements. I was always putting that in my " bag of

tricks " for a later day if I felt we needed it. Now, based on the

past few conversations, I'm hitting it full speed ahead.

I truly believe that is a product of the outside environment -

he had a few bouts of high fevers for no reason as an infant, not

that great aftermaths of vax's (I stopped that months ago with 5 more

to go for his age) and sensitive skin and tummy. It makes total

sense to me that the cleansing of the body like a GFCF/supplements,

etc could improve anyone's health, esp that of a delayed child.

My typical " M.O " is to get myself all wrapped around the axle on a

crusade to the n'th degree before I settle down and be rational. I'm

in the crusade mode right now, on my way to rational. I made the appt

with Elaine Hardy, DAN! Doc today for Jan 4th. Of course, I asked

the admin if I should start the GFCF and supplements NOW and she said

no, take it easy, relax and dont' make drastic changes in him now.

She will do the complete eval in Jan with blood tests and such and

we'll start some things right after the eval based on her thoughts.

I will start with SuperNuThera vitamins and epsom baths now though. I

will also make the probiotics more of an everyday event instead of

when I think about it.

I am also going to be sure to be more aware of 's speech

patterns and such, keeping better track of whether I see the same

things the SLP does and to what extent, how often, when etc. I don't

doubt her in the least - I just need to see more of what she is

saying. My husband will be home with him starting in January, full

time, and starts Montessori 3 hours a day, 3 times a week in

January too. BOth of these will all be interesting threads woven

into this journey for sure.

*I want to make one thing clear - my *fear* of an autism dx is not

one of snobbery or shame - its something that hit me like a ton of

bricks like I'm sure it does many. Right now I'm not willing to

accept that because we've just begun our journey. I realize that the

dx isn't a death sentance and that will still be the same boy

regardless. Right now, this is just all so new and cloudy, so I

don't want anyone to misconstrue this as shameful. Hope that makes

sense.

So this is our story. Rationally speaking (yes, I can toggle back

and forth!!) is an amazing little boy. SO full of life, so

happy, generous of himself (on his terms), loving, affectionate,

social and *smart as a whip. He is my smoosh-baby who loves to read

books before bed and give hugs and kisses. I love him 'right up to

the moon, and back!'

I'm shocked groups didn't cut me off yet!

Thanks for staying with me - if you made it this far.

Tina in NJ

Mom to Jack (6) - the best big brother ever

and (2 1/2) - big smile, apraxia boy