SNR: Autism Evaluation Update

[laurenh]

Hugs.

I'd approach it as a new medical diagnosis with your landlord and see if they'll be flexible in letting you out of the lease.

[holly116]

(((swizz))) You are a great mom, C is a great kid, and she is lucky to have you.

[boiler717]

Hugs, I'm glad you have answers but I'm sure it's tough, too.

[qcinoct]

{{hugs}} My 8 yo nephew has ASD. EI can do wonders, and I hope C will be able to get the assistance she needs now with a diagnosis

[sunshine608]

Hugs.

[CloudBee]

You have been such a phenomenal advocate for Cora. Big hugs.

[ruby412]

Hi swizz. I know we don't really know each other, but I want to offer hugs. My older daughter has a medical condition and I remember the day, shortly before her 1st birthday, that we got her diagnosis. I felt a lot of emotions - angry, sad, disbelief. I mourned the loss of the completely "typical" life I had envisioned for her. It's hard. Know that you're not alone! And also know that while it might always hurt a bit (it still does for me), it won't always feel as hard as it does today.

[auntie]

I don't know if an IFSP is binding in the same way a IEP is; DS was almost 7 before he got his dx so we never did/needed E services.

I do wonder, swizz, if the new dx means you can advocate for ABA services rather than just a speech delay or OT.

[pennylane]

Hugs.

[rootbeerfloat]

Hugs

[Gato]

Hugs, Swizz. Good luck navigating everything. Cora is lucky to have you on her side!

[scribellesam]

Late to this, but hugs. I hope this allows you to get her the services she needs to be (even more) awesome.

[thebreakfastclub]

Hugs and best wishes to your family.

[leonard131]

Thinking of you. You are a wonderful mom and Cora is so lucky to have you.

[bowies]

Hugs swizz.

[bcarp30]

Big hugs. Echoing what others have said, you're a wonderful mom and advocate. She is so lucky to have you in her corner!

[genet313]

Hugs swizz.  Cora is lucky to have you as her mom.  As others have said, I know you'll be a good advocate for her.

[tulips]

Hugs. She's a lucky girl to have such a strong advocate as a mom.

[zeewifeandmama]

Hugs!!

[awkwardpenguin]

I'm sure diagnosis brings very mixed feelings, but you are such an awesome advocate for her and anything you are feeling is okay. Hugs to you.

[momof2]

I realize I am brand new, but I have a child with profound autism and intellectual disability due to a specific genetic disorder.  I realize your situation may be very different than mine, but I have spent a few years now in the world of special needs. Here are some things that I wish I had realized:

1. This is a marathon, not a sprint.  You hear all this stuff about "how EI will help so much."  This may very well be true, but it is ok to take things at a pace that you are comfortable with.  You are in this for the long haul, and it is ok if you don't get 18 types of services set up in the next 30 days.  (18 may be an exaggeration, but it feels overwhelming sometimes). 

2.  Start to get a sense of who your "team" will be.  If you don't have a good developmental pediatrician, you should start to find one.  It might take 6-9 months to see them, and that is ok (see point 1), but they are a good addition to your team.  If your local autism society has parent advocates, they can be a great resource.  In my case, I wish I had reached out to them sooner -- they really knew the "real deal" on how to get services.  Figure out local groups where people are helpful.  It has taken me 3 years to really figure out who my team is (again, not a sprint).   People that are a pain in the butt, don't want to listen, don't want to believe the diagnosis, etc are not people you need to spend much time with going forward (at least not for the 1st year).

3.  Try to figure out if you qualify for non-needs based Medicaid (unless you already have this).  Every state calls this something different (this is where the parent advocate really helped me).  While this is not a sprint, I wish I had made the call sooner to get on the waitlist for this.  I have amazing health insurance, and I am still dying for the day when non-needs based Medicaid would open the door to respite for us.

4.  Cut yourself some slack for the next 365 days.  Mark it on a calendar.  If you are married, sit down with your husband and say "here is where we are, what do we REALLY care about for the next 365 days?"  And then, when a crisis arises, think about "is this really on my list of things to care about this year?" and then proceed accordingly.

5.  Get an individual therapist and perhaps a couples therapist.  We have done both.  Not because our marriage was in trouble, but because it was amazing to process our feelings together with a third party in the room.  You are going to go through a grieving process -- try to do it in the healthiest way possible.  I often pat myself on the back purely for not being driven to drink.  Again, I am sort of kidding. 

6.  Keep a sense of humor as much as you can.

[Deleted]

((hugs))

[SJ]

Sending you lots of hugs. There is some great advice in here.

[oceanstbride]

Lots of hugs swizz. I'm sure today is full of lots of emotions. You've been an amazing advocate in getting C what she needs and I know you will continue to be.

[Jem]

Hugs! You are doing such an amazing job advocating for your family.

[Marmee]

Hugs Swizz. I hope you get all the support you guys need. I know you'll be an awesome advocate for C.

[rex]

Hugs. i know this is a lot to take in, not just today, but on an ongoing basis.

[starlily]

Lots of hugs to you.

[yellowbrkrd]

Hugs. I'm sure you're going through a roller coaster of emotions.

[winecheery]

We're here for you swizz, and for Cora. This doesn't change her heart, and who she is at her core. It's just an added layer. You're a great mom. I hope you can get into the best district for her with ease.