Parent Comments

Parent Comments

A Parent’s Point of View

The struggle of watching my child cry through structured play group.

My child was a terror in structured play. His first day was terrible and I sat in the waiting room with a broken heart as I watched him cry and fight throughout the entire hour. After it was over he ran to my arms and I scooped him up with relief. I wasn’t sure who this had been more difficult on, my son or me.

Things didn’t improve quickly. He began to cry hysterically when we drove into the parking lot of the center and I could just feel how much he didn’t want to go. But I stuck it out. I would distract myself by reading or going for a walk. But the best support was from the other parents. We all were in the same boat with our children and their special needs. This gave us common ground and a place where we could talk about our concerns and worries. One mother made a huge difference to me. She just kept reminding me that this is something that my son needs to do. He’s safe, he’s not being hurt, and I knew that every person who worked with him was doing the very best thing for him. I knew that DDI VANTAGE cared very much for my son and his welfare. This finally gave me the peace of mind to continue with the playgroup.

He continued to cry through the entire hour for over a month. But I started to notice things at home with his behavior. He could understand more. I was able to talk to him and communicate better with him. This was a huge issue and I became kind of excited. He would also mimic activities they had participated in during the group classes. Songs became a passion in our family and now we sing all the time. He was going up and down the stairs easier, and his attention span became so much longer. I realized that even though he cried during the class, things were sinking in. He was learning and I could see dramatic differences in his behavior.

After seven classes of screaming and tears, of crying, sobbing, fighting, and the "dead-weight" trick perfected to an art, one day my son ran up to the playroom door and opened it. And he went through his first class without a tear. I was in the waiting room laughing and jumping up and down with total excitement. Everyone in the office had heard about the little boy who had such a difficult time in group, and now they were sharing in my excitement. We hugged and we laughed and everyone there seemed to be a part of this accomplishment. A few of us did happy dances and one woman told me to call someone. "This is big news, you've got to call someone." (I called my mother.)

My son is doing great. Structured play is the highlight of the day, and he’s already made a new friend in there. And the differences at home are phenomenal. I am so pleased with the program and the people at DDI VANTAGE. They care about my son’s development as much as I do. And this convinced me. I wanted to let other parents know that even though it is so hard to watch your child struggle and cry out for you, this is something that will help them. And that’s the bottom line. My advice is to stick it out and talk about your concerns and worries with those you’re working with and other parents at DDI VANTAGE. It’ll be worth it in the end.

–Lynn S.

Poem written by a Grandfather

This poem was written by the great grandfather of a child in our program about a visit with one of our Family Service Coordinators.

Say Troy

She sits in the front room with our granddaughter
Her deep voice probing, soothing,
Reaching for answers not there yet.
They are talking about our great grandson,
Who is two and a half, though cannot speak yet,
In third person, as he watches
Knowing well he is the subject,
The toy ball tossed back and forth between the two.

They will not decide today, if ever,
For he will slide in between them
When their attention is diverted
And speak, and speak, and speak.

Sometime, not far in the future,
The two of them will meet again
Wondering, this time,
Why they prayed for rain
And risked the flood.

-Robert J. Frederickson

Letter from a Parent

Hi, my name is Diana Sagers. I have a daughter with multiple disabilities due to brain damage she experienced in utero from a virus commonly called CMV. As Rebecca has gotten older, I have wanted to find ways to fight for her and maybe help others along the way. I was asked if I would like to join a state committee as a parent volunteer to represent myself and other parents on a board called the Interagency Coordinating Council that includes programs under the Department of Health across the state dealing with children with disabilities. I accepted this position as we moved away from Logan after finishing our schooling there. Most recently, I was asked to become a member of the Health Advisory Council which helps advise the Department of Health. When they had the budget hearing last month, the Health Advisory Council is who we all testified in front of to have them include our programs in the budget. It was pretty interesting for me to be there with my family and have them introduce me to the whole room as a member of their council. I hope to bring the views and needs of parents across Utah with me to the table on this council. When they talk about important issues, I want to be the voice that lets them know how the things they decide will affect real people like you and me and our families. I’m living proof that anyone who cares enough can be a good advocate for their child. I’m not a very outgoing person, but I am easy to talk to and I would do anything for my daughter. In my mind, that’s what makes me good at what I do. It is intimidating sometimes to talk to people who seem so much more important than I am, but when they are just another parent, uncle or friend of someone with a disability and they relate to me in their own way. They want my opinion because I’m a parent and I live every day with challenges that they might be removed from and they need to be reminded.

So, what can you do to be an advocate? Keep yourself available to help anyone and everyone understand your children. Let your opinion be heard because otherwise it can’t be counted. Join our parent support group online to let your voice be heard in the least threatening way–e-mail. http://groups.yahoo.com/group/utahkids/ And most of all, love your kids enough to stand up for their rights and their needs. It’s not hard when it’s all for the kids!

Letter from a Parent

I just want to express appreciation for the remarkable services rendered by the DDI VANTAGE program. The people who came to our home and assisted to the needs of our child, are considered angels by the members of my family. They not only brought their expertise and refined knowledge and abilities into our home, but they brought hope, encouragement, insight, desire and genuine concern. It seemed that their influence was not only for our child in need, but enhanced the well being of all within our home. I do not have adequate words to convey the gratitude for these remarkable people. I honestly didn’t have a clue that such a marvelous program existed before our pediatrician referred us to the DDI VANTAGE program when our child in need was nine months old.

Though we are partial to certain providers, we have come to realize that the entire staff at DDI VANTAGE has an unprecedented ability to envelop children who have special needs with encouragement and determination to accomplish things that seem impossible at the onset. The goal setting and written record of ideas and accomplishments were proof of significant milestones that were obtained no matter how minute to the "norm."

There is a unique ability of the staff at DDI VANTAGE to nurture the caregivers of the special needs individuals, buoying them up and enabling them to fulfill their responsibility to meet the needs of these children. One of my older children commented, that DDI VANTAGE did more to help our situation than the medical community. Though both have been essential to our child’s needs, certainly, DDI VANTAGE has been the ones to render the hope, courage and often the honest outlook of the circumstances that were before us.

As my child is now on the brink of graduation from the DDI VANTAGE program, I have the fondest and highest regard for the excellent services that have been given to her and our family by so many. You came into our home, that was often in less than ideal circumstances, and sat upon our cluttered floor and exemplified some of the most noble actions of humanity, caring about and for someone in need. Thank you!

–Anonymous