"The Orientation" Part 2

Hey All, as I was talking about in Part 1 of this blog series, I decided to put together a blog series basically of things I wished I would have known early on. Things to do, questions to ask and treatments to seek. We will pick up with number 2, written by Jen!


I wanted to participate in Lindsay's orientation posts and add a few thoughts to #1 -   It was so vitally important that we find a "medical home" pediatrician for Hudson, because that led us to OT, Speech, Social Skills groups and many other services over the past few years.  I have said this before, my whole life felt like it had been turned upside down and my community was no longer my community.  I had to find my "new normal."

With that we move to #2:
 I have to put my pitch in for finding a support group.  Everyone needs community.  Some feel comfortable in a specific diagnosis community and they are out there - Autism Speaks, CHADD, Utah Down Syndrome Foundation,  In the case of Lindsay and I - our kids did not fit any one "ism," they had multiple.  We searched for a group that had a variety and did not find the right one, so we started one. However you find one or start one is up to you, but do not give up on that concept!  It has been the single most grounding and freeing experience of my life.  Within our autistic home; with it's nonsensical rules and rigidity, it is sometimes the only laugh I have had all week.  Nothing is more freeing that belly laughing about the chaos that ensued when your child did not understand the sarcasm of a friend and ran screaming epithets in a crowded restaurant (true story).

Utah Easy to Love - meets monthly in Salt Lake City and Davis County.  We hold monthly activities for families, we have this blog, a Facebook page, email, and a phone line.  Reach out!  Tell us your story.  We get it and we want to be there to support you through this time.  It does get better.  It may never be easy, but it does get better.
With love and laughter,
Jen

Stay tuned for part 3...

"The Orientation" - Part 1

Jen & I have often talked about when we first started chatting after meeting at the Children's Center. Both of our kiddos (who are only 2 days apart) had started attending the preschool there about a month prior to us first talking. At that point I was pretty checked out from things that were going on around me and completely focused on Miss Emma and her medical and emotional care. I had seen Jen there,  and for a brief moment my once super social self had thought maybe I should go say hi. I didn't. I continued sitting in the waiting room reading whatever book was recommended at the time or walking past her in the parking lot. Thankfully Jen ripped off the band aid and came over to chat, honestly I don't know that I would have with the space I was in. Chatting at the Children's Center soon turned to Starbucks runs while we waited for our kids to get out. Jen jokingly asked if there was some type of orientation and for a minute I wondered if I had in fact missed something! We have now been traveling this path for a few years now. I would never claim to be an expert because everyday is different, but we have picked up a few things along the way.

We talk a lot about the "what next". What do you do after your child receives a diagnosis, or even before when you are trying to figure out what is going on. There is no orientation packet or guide to what the "plan" is or should be. There is also only so much you can plan for. So I decided to put together a kind of orientation. It is just a guide of things I have learned on the way, that have helped or made things a little easier. I am not a professional by any means but I know that if someone had given me even a few little nuggets I would have been really really grateful for not having to learn it the hard way!
Because life is so crazy I will be breaking this up in to a few difference posts, that way its more manageable for me and for others to implement. Please leave comments or feedback and let me know if there is anything that you want more information on!

#1 - Have them formerly evaluated. I started with my pediatrician who was monitoring Emma closely. As she got a little older and things got more complicated we were referred to the Children's Center for therapy, meds and preschool. We were also sent to the Child Developmental Clinic for assessment. I was lucky with my pediatrician being the head of the "team" and making sure were were doing what we needed to. If your pediatrician is not on board or listening to your concerns it may be time to look for someone who listens to you and your concerns.
  ** If you are looking for a pediatrician it is super handy to have one that practices the Medical Home Model. Just ask them, they know if they do! Basically they are the team captain who oversees everything from mental health, specialists, school, Therapeutic services. I can't even tell you  how valuable this has been for us.

Resources:
The Children's Center (therapy services for children under 7)
Child Development Clinic
Clinic 6 University of Utah
Neurobehavior HOME clinic