Thursday, March 19, 2009

One Month

I know, I know I haven't updated this blog in over a month!  Life just has a way of keeping us very busy these days.  What have we been up to?  First the happy news.  Well, we had our six month post placement home study.  Six months!  It doesn't even seem possible time has gone so fast and yet at the same time it feels like Tessa has always, always been a part of us.  She simply continues to amazing us everyday!  Tessa is a beautiful, loving, delightful, charming, mischievous, up-for-trouble-anytime-thank-you, giggly little bundle of joy!  I can't help but feel how unbelievably lucky we got the day Gladney choose Tessa for our family.  Thank you Gladney, Thank you God, Thank you cosmic forces that be for allowing us to be her parents!!   

More news on the Tessa front....six months, 31 stool samples and three rounds of medication later and we are officially GIARDIA FREE!!!!!!! WoooHooooo!!!  Here's hoping I never have to scoop poop into a tube again!!

OK, more news, not so happy news, and the real reason I haven't felt like blogging much. We recently found out that our smart, funny, wonderful and amazing little boy has Asperger Syndrome.  

It's not like we're new to dealing with developmental issues - Neilan has been receiving PT, OT and speech for fine and gross motor delays since he was 18 months old - but this year things changed.  Neilan has been struggling in kindergarten with meltdowns and transition problems and I just thought, stupid mommy that I am, that a lot of kids probably struggled like that.  I mean this child taught himself to read at three and math comes easily for him so I assumed the problems were because of the physical issues Neilan faced.  

Nope. 

A few days before Christmas one of his therapists suggested we have him evaluated - she had some concerns.  As soon as I got home I called my sister, a pediatric OT in Chicago, to get her opinion.  A yes or no question I asked her. Did she think Neilan had Asperger's.  Yes.  In-between my sobs Kathleen gave me the best advice she could have.  "It's OK.  Nothing has changed in the last 10 minutes. Neilan hasn't changed in the last 10 minutes. He's still the same wonderful little boy.  You just have new information to help you help him. That's it." Can I just say how amazing my sister is at hand holding over the phone.  So by the time the Developmental Pediatrician confirmed it for us two weeks ago it was far from a surprise. That's not to say that hearing the actual words, knowing this is what it's really going to be, didn't cut us to the heart - because it did.  So for now we are busy reassessing schools for next year, working on new therapeutic game plans and frankly coming to a new sense of normal for our family.
I have so much more to say but for now this is it except for one more thing - the most important thing- how profoundly grateful and lucky we feel to be this amazing,  joyful, beautiful little boy's parents!!    

7 comments:

coffeemom said...

Ah....so glad to see an update!!! Thank you. Wish I could give a hug, in person. But I would say just what your sis said... he IS exactly the same sweet lovable boy. YOUR boy. And now you have more info to help and understand.

I've been there. NOt w/ Aspergers but w/ a whole bunch of other scary ones for one of mine. Call me if you want to talk. But, I spent a bunch of time getting my back up: "don't label my kid" or being crushed, "no...really? no....." but really, this child wasn't a different child just because we had this info. This is MY child. And now, I accept it and USE this info to HELP, to move forward, and to let go when I need to of some expectations. It's helpful, and the bottom line IMHO is always, MORe info is better. It's a tool...use it!
He's your boy, perfectly made for you. You stay in my prayers... Both your kiddos are so beautifuL!

Julie said...

Moe you are such a great mom, and your sister is very wise. There is no challenge that you cannot face. These are your beautiful, amazing children, and you are their beautiful, amazing mom. Hugs to you.

Calmil2 said...

HI-
I just found my way back to your blog through another blog. I visited before and LOVED the style of photos that you had done at Thanksgiving! I am also a pediatric Occupational Therapist and have a lot of experience with Asperger's. I want you to know that I adore the kids I work with that have Asperger's. They have made AMAZING progress and even though there are special needs (everyone has special needs!) they have amazing gifts that should always be addressed, and celebrated even when there are areas that they need help with. Please let me know if you have any questions :)
Harmony

Little Ethiopia(n) said...

M...just returned from vacation and am just now catching up on my favorite blogs (so glad you are writing again!). I am so sorry to hear the official story behind your son's diagnosis. I have absolutely no experience with this but I love to drink coffee (or something stronger) and I love to listen so please let me know when you want a LA day of girl talk...I'm here for you. xoxo-kat

m&r said...

I am sorry to hear that you've been going through such a rough time emotionally. I love what your sister said though - a diagnosis doesn't change a thing about who your son is... it just puts a name to your son's wonderful, sweet personality!

Jen said...

What a heartfelt post. You are an amazing mom with a great sister. I think that I will remember the phrase about "him being the same wonderful kid he was 10 minutes ago...but now you have more info"...for myself and friends.

Danni and Tommy said...

No one can meet your son without realizing how bright and beautiful he shines. That will always come first. We ALL are special and different and have needs. He is gifted. In a good way. If you ever need me, PLEASE know I'm a phone call away. Hope to see you and both your lovely children again soon. Our court dates are coming so soon! YAY! We'll have to get together and celebrate.