Tuesday, June 10, 2014

Top Ten Things To Know About a Child with Special Needs

11 years with Annie!

Today, I had the opportunity to speak to Early Intervention parents and professionals about "Having That First Conversation with Families" - families of children with special needs. Having been on both sides of the fence - a parent and a professional - I offered my perspective. In preparation for my presentation, I read about a training for a disability ministry in which the ministerial student approached the presenter and here is what he said, "I feel better prepared to talk to parents of children whose child has died than to talk to parents of a child with a disability. I simply have no idea how to have that first conversation." Wow! What a statement!
 
I have used this "Top Ten" list for several presentations to different groups so I thought I would share it here in hopes that it will give you the parent perspective of having a child with special needs.
 
Name on her bed at Children's Hospital of Alabama

 

1) A child with special needs has a name!..... Our daughter is officially Ann Olivia but to us she is "Annie". I shared the story in which Heather, our first NICU nurse at Children's Hospital, made this name tag for her bedside. I was so touched that it read "Annie" and not Ann or Ann Olivia or Baby Allen. It was a very personal approach to her care that we remember to this day! It means so much to us when people take the time to know her as "Annie" and not just the official name on her files.
Our tired artist at the Sprayberry Art Show
 
 
2) A child with special needs is busy!....Annie is not as "busy" as she used to be, thankfully! I am referring to the many doctor visits, therapy visits, case managers, early interventionists and more. It can be quite overwhelming at times.
 
Easter 2013
 
3) A child with special needs has a family with special needs!....I read the blogs of some parents of children with special needs and the found the following things to be pretty common in all of them - parents may be tired, scared, jealous, lonely/left out, stressed out, needing a break! We experience highs and lows. We are sometimes good at hiding things and sometimes not. We are stronger than you think and not as strong as you think. Of course, we don't experience all of these things all the time. The same goes for the rest of the family as well - like siblings. At the same time, we all experience joy!
One of my favorites of these sweet sisters!
 
4) A child with special needs also needs attention - just like other children.... It warms our hearts for people to talk to Annie, even though she can't talk back. At the same time, it is important that the child with special needs doesn't get all the attention. Elle is equally as important in our family!
5) A child with special needs is expensive....financial needs can be a "special need" all it's own. Thankfully, there are resources available to assist families in this area.
 
Papa and Granny
Nannie, Granddaddy, Madeline and Margaret
 
6) A child with special needs has resources.....in Early Intervention, listing a families resources is an important part of the Individual Family Service Plan. We have been fortunate to have great resources for Annie.
7) A child with special needs is a challenge..... what child isn't? I recently read about a conversation between a dad and daughter. The daughter was about to have her first child - she said to her Dad, "Dad, I think we're ready" to which he replied "No, you're not". Is anybody ever really ready? We take one day at a time, always learning along the way.
 
Friends and Family at Annie's 5th Birthday
 
8) A child with special needs takes a village..... Is it more than WE can handle? Sure, it is! That's why our "village" is so important. We handle it, first of all, because we have a great faith! God has placed some pretty special people in our life - grandparents, aunts/uncles, cousins, teachers, para educators, doctors, nurses, principals, therapists, early intervention staff, friends, church members and more! So thankful for EVERYONE who has played a part in Annie's life movie so far!
 
Sprayberry Night at Alabama Baseball 2013
 
9) A child with special needs can be happy.....if only the rest of the world would take a cue from Annie or my precious cousin, Wendell, who has cerebral palsy! Two of the happiest people I know!
 
Taking a stroll at Sprayberry!
 
10) A child with special needs is a blessing....we just can't imagine Annie any other way. Do we wish she could walk and talk like other children? Of course, we do! But we love her for who she is - she's feisty, determined, funny, strong, and very active. We are so proud of all that she has accomplished and so thankful to everyone on her team!
 
 

1 comment:

  1. I miss Annie, and her family, so much! Love you! So proud of Annie's big sister, and her mom and dad. (-:

    ReplyDelete