Thursday, May 22, 2008

it has a name




this week has been a hard one.


we finally had our long awaited, much anticipated & ultimately heartbreaking appointment with the developmental pediatrician. i left the meeting holding angus' little hand tightly and fighting back tears, my head filled with about as many questions as i had answers and with an actual panic-induced ringing in my ears. i suppose that sort of thing tends to happen when you are told your beautiful and brilliant little handful has autism.

and i thought i was properly prepared to hear this. for over a year things have seemed to be leading us here, to this diagnosis. for longer than a year. in the past few months i have read fourteen books on the topic, readying myself for the possibility. but it was still enough of a shock that my head filled with pressure and my ears heard only wha wha wha wha as the doctor explained things to me. i can't believe i did not hold it together. a week before this appointment, i met with our pediatrician and she made a point to tell me what was most likely going to happen and made me assure her that i would try my best to just get as much information as possible and not react. but there i was, deaf. even though i had promised our pediatrician and myself that i wouldn't let this happen.

i've had a few days to work through what i thought i had already worked through and i am really getting to okay with this. he has a best-case scenario sort of diagnosis within the spectrum, i guess. he is high-functioning, and that combined with his high intelligence will give him wings. so now i have kicked into action-mode, busying myself with compiling our list of new books to read, new diets to try, new therapies to begin. readying myself for the inevitable struggle for services with the insurance company, with the schools. learning about his educational rights. learning to accept and move on. my new goal is to KNOW. to continue to advocate for him even better than the best my abilities can offer. and above all else, i had to have that moment--later in the day of his diagnosis---where the feeling ran over me that no matter what angus is still the same boy he was before the doctor uttered those words. and that kid is really fucking great.

there has been some related good news this week, too. well, bad news that is also good. combo news. at an appointment with his asthma & allergy specialist today, skin tests showed that angus has significant food allergies to ingredients in about 70% of his current diet. this was so hard to hear because the kid barely eats as it is. if i were to compile a list of foods he will eat i don't think i'd get to 20, and almost all of it is effected. so what he has been eating is making him sick. bananas (a staple of his diet since he began eating solids), corn & corn products (corn is in everything! who knew?), cottonseed oil (a ridiculous & unnecessary filler also in tons of food), peanuts, all tree nuts and mild allergies to other things, too. so tomorrow we begin a 7 day elimination diet where he will not be allowed any foods containing known allergens. he may starve. he is so stubborn about food i just don't know how this will go. but after the week is up, we then let him binge for 4 days on allergen-heavy foods and see what happens and then report it to the physician.

where is the good news? well, for starters, soon angus' body won't be in constant defense mode. once the bad stuff is cleaned out of him he should feel better and lose the rashy, dry skin and eczema that make him so uncomfortable. and as a bonus, our doctor explained that some children who exhibit autistic traits are doing so due to food allergies. so there's that. fingers crossed.

i hestitated to write here about this, but decided that this will be good for me. it's kind of a relief to put all this out here. our day to day difficulties are emotionally exhausting and socially isolating. this forum is a good way to sift things into perspective, to vent and brainstorm, and now maybe get some advice...some support. not pity though. my baby rules. i don't want to change anything about him. (well, except for the food thing. i'd love for him to eat anything i placed in front of him....that'd be cool.) i just want to fortify him for what could be a rough future. help build him up strong and happy and unbothered by being misunderstood. make sure he knows how fantastic he is exactly as he is. and just enjoy him.

and that's not hard to do. because he is amazing.

10 comments:

Danielle Stone said...

Holly,
Being as knowledgeable as you have become and continue to do Angus will do nothing but thrive. With what Chris tells me and what I see on your site you are a kick ass mom !! If you ever need someone to talk to I am here to lend an ear :)

I too have been told recently I am allergic to eggs so I understand what that battles is like. In August I am doing a "Walk for Food Allergy: Moving Toward A Cure" in Fairfax. I will be sure any sponsors/donations I get know I am not only walking for myself but also Angus :)

Mrs. Brown said...

thanks so much, danielle.

Amy C. Smith said...

I love you, Holly. :) Many kisses to the little man, and noodle too. Keep us posted. xoxoxoxo

tracey said...

I just want to give you all a big hug! Keep on doing what you are doing, research and stay focused. He is the same boy and what a great little boy! He is Frankensteins favorite little boy! We are here for you!
xot

gray said...

Holly,

Incredibly moving piece you have written here. I hope you continue to record your experience.

You're an amazing Mom and your writing will help and inspire others.

gray

Katie said...

Oh, Holly!

I love you.

gonzomama said...

I really don't know what to say except that it sounds like you both are so lucky and blessed to have each other. I have no doubt he will continue to amaze you and you will amaze yourself.

Mrs. Brown said...

you are all so great and i thank you all for your kind comments. i think...i know we are going to be just fine.

littlechook said...

my friend's little girl had to do an elmination diet (she has severe epilepsy) and afterwards here symptons were more controlled and she would eat a more varied diet.

they said at the time it was hell but they came through stronger,

you are a fantastic mummy and your son is so lucky to have you to care for him

karin
x

Sweet Georgia Brown said...

Oh geez, I haven't checked in on you for a while, and so I just read about Angus' possible autism. I'm really sorry to hear it, but he's incredibly lucky to have you for a mom. Hopefully eliminating those allergens will help...you'd be surprised what an affect diet can have. I used to have horrible stomach aches all the time growing up, but they went away as soon as I became a dirty vegan. Anyhow, all I'm sayin' is hang in there. It's gonna be alright.