Sunday, January 13, 2008

Sunday Gratitudes
snow

A year ago I had the opportunity to spend two hours with 12 professionals at the University of Utah. They were there to watch DD and ask questions of me. They were the top professors and professionals in their field: special education, speech therapy, occupational therapy, physical therapy, other therapies I can't think of off the top of my head. The two hours were taped for future graduate classes as well as streamlined to 4 different graduate classes in Utah, Idaho, North Dakota, and Nevada. The purpose of the project was to show graduate students how to come up with solutions to problems that families of special needs children face.

We walked into the room and as the panel introduced themselves to me, DD made the rounds and hugged everyone. She then sat on the floor with some of the therapist who brought toys and started to play. DD loved being the center of so many people.

We talked about safety issues (DD's wandering and not understanding stranger danger). The subject of her brothers came up (who recently had made known to other family members that they thought I loved DD best. This stemmed from all the time I spent not only in therapy, but in advocacy work for the Utah Down Syndrome Foundation. My answer to my boys was to immediately quit UDSF. My boys were more important and needed me more.) DD demonstrated all the ASL she knew (all taught to her by me, my boys, and Signing Time videos) which surprised all the therapists as she knew 200+ signs. They tested her ability to use scissors (couldn't) and her ability to write (she barely mastered circles). They looked at past IQ tests (while I told them my opinion of IQ tests........in a nice way). We talked about behavior issues and potty training.

The whole purpose of this exercise was to put a human face on the people these professionals (and those they taught) work with on a daily basis. They were to come up with solutions to problems. When asked my greatest fear, I told them honestly it was two: 1. that DD would never understand the parameters of safety and stranger danger and 2. that DD would learn to communicate effectively, whatever that communication may be.

Their great answer to me?

Lighten up.

That was it. 12 great professionals pulled apart and analyzed my family's life and came to the conclusion that what was needed was a huge pat on the back. They told me I was a great mom and I was doing a great job and I needed to enjoy my family and not worry so much about what I was doing right or wrong or, worse yet, what I was not doing that I should.

Future generations of special education professionals will have to endure a film of me crying. It was such an empowering moment to have them tell me and moms of special needs kids everywhere that we are doing good. They understood the stress I felt about making sure that DD had every opportunity she needed to grow and develop the best she could, while at the same time trying to make sure I was the mom my boys needed and that they were not neglected in all of the energy I had to focus on DD.

The professor in charge pulled me aside after and told me that they had never had a session like this where they focused on the parameters of how special needs affected the family. They give the support we need, help us set goals to achieve, and test our children for improvement, but this was the first time that they recognized that we also need congratulations for a job well done.

One professional said it best: "I'm not worried about whether your daughter is labeled as Mild, Moderate, or Severe. The most important question to ask is whether or not your daughter is happy. We can all see that she is happy and healthy and she has a good family structure."

There were emails sent to me after that had suggestions to the problems we listed at the beginning. I was grateful to get that information. But I will forever be grateful for the message of "Well Done". I think all parents of all kids of every ability need to hear that praise.

8 comments:

Tammy and Parker said...

What an AMAZING post!

Thanks for sharing!

Can you email me at hods5mom@aol.com
:)

The Country Mouse said...

That was a great post, and brought tears to my eyes. I admire you so much, and I guess I should tell you that more often! (I am, in fact, a little envious of the great mom love your kids have.)

Farrell and Marilynb Barlow said...

I love you. You are a great mom and a great daughter and by Valentines day you will be a great wife. Oh, and a great choir director and a great neighbor and a great niece and a great sister, and a great friend.
Mom

Orderly Chaos said...

I love this post...it is so true! I can't imagine how you feel as a mom of a daughter with special needs, but I know for me as just a mom, that it's always nice to be told that you're doing a great job! And your daughter is adorable...I love watching her in primary! I can tell just by seeing your family that you are an awesome mom and all of your kids are lucky to have you.

Haley said...

Hi guys, I am enjoying a rare opportunity outside of the hospital when the sun is actually shining. Well, actually, it is raining, but the thought that the sun is actually up there behind the clouds is enough for me. I always enjoy reading your Sunday gratitudes blogs. They put alot of things in the proper perspective. In my opinion, DD could not have gone to a better family. I'm glad that my "thumb sucking" was a hit with DS#3. I am going to struggle when next we meet calling DS#1 by his new preferred name, though I have to say that your bros have got to be proud of his hair. It brings back some serious highschool memories for me. Sorry for the novel, I will give it a rest.
P.S. Who knew that you were such a Sister Sledge fan????

Scarehaircare said...

I only like "We Are Family" from Sister Sledge. My song list changes from time to time.

DS#1 quit spiking his hair last week. I wish he would change it back as right now it is a Lurch Look.

mum2brady said...

Loved this post!!! What a wonderful experience to have too. I always wish the medical students and residents were a little more educated about special needs - they say the stupidest things sometimes ;)

Thanks so much for sharing your thoughts. You are a GREAT mom!!!

And, on another note, I too have resigned my position with our local down syndrome group. The emotional drama just got too much with all the stuff going on with the UDSF and UWD that I just had to quit cause it was affecting my family, and, I didn't want to get sued, which apparently was going to happen. It's all so sad!

Good idea to move LOLOL

Hugs and smooches!

Val said...

You are doing a great job! I know what if feels like to work with so many therapists and do all you can to help your child and still have things you need to work on. It's important to focus on what you have accomplished!