Another good prompt from the blogging challenge!
Create a care package for a family with a newly diagnosed blind child.
Oh, the things I wish I had known three years ago… Some things you just have to experience for yourself to understand. Having a baby with uncertain health and a disability was an experience that I can only now look back on with some amount of perspective.
When you are in the midst of all the doctor and specialist appointments, setting up Early Intervention, getting insurance clearances, trying to understand your child’s condition, and learning to be a parent all at the same time it’s overwhelming. We were just trying to keep up and hoping that we were making good decisions, but comfort was hard to come by. I guess comfort is something that only comes with time; however, I think a resource/care package like this would go a long way!
Here’s what I would include in a resource package/care package for a family with a newly diagnosed blind child:
|National Federation of the Blind, National Braille Press,
National Organization of Parents with Blind Children.
Early Intervention is a program that helps children ages 0-3 who need help to grow and develop. We left the hospital after Thomas was born with a referral for our local Early Intervention provider. Children that have a disability should be referred almost immediately for this program, but other children may begin to have difficulty hitting developmental milestones and be referred then.
I learned so much from Tom’s EI therapists. They gave me ideas and resources I would have never found or would have found too late. I didn’t know any other moms with children with special needs so I felt very alone. I did have Tom’s therapists who had years of experience working with children with many different abilities. They shared stories and answered my questions. I really don’t know what I would have done without them. You can read more about Tom’s EI experience here.
ROPARD’s Low Vision Resource Center
If you can get to Detroit Michigan then make an appointment to visit ROPARD’s Low Vision Resource Center do it! We met with Paula Korelitz, former TVI (Teacher of the Visually Impaired) and current Outreach Coordinator. She handed me a tablet and proceeded to get a through history from us, and then provide us with as many resources and suggestions as she could in the three hours we had. I could have stayed all day! She was able to break down ideas and make them applicable to our situation in a way that no one else had.
You will learn a lot from this four minute YouTube video. I cry every time I see it. I cry because it touches me and inspires me to do everything I can to get Tom what he needs to succeed in life.
Contact Your Local School for the Blind
We started with an assessment with the Western Pennsylvania School for Blind Children’s Toddler Program. I remember how hard it was to enter that building the first time. I was still wrapping my heart around Tom’s diagnosis and it was the first time I had ever seen other blind or visually impaired children. I saw a group of students getting off the elevator. Some of the children had long white canes and some wore glasses but they were just like any other group of young elementary students.
It was the beginning of a long and beneficial relationship with the WPSBC. When Tom was first diagnosed I needed to talk to people who understood blindness and could help me understand it. We did playgroups, daycare, and now Tom is in preschool at WPSBC.
Find another Parent Talk to
You don’t have to become best friends but your heart will feel lighter after one conversation or email. Just talking with another parent who has walked a similar road is incredibly comforting. And you can learn a lot too!
How Do You Find Other Parents?
Facebook Groups – MAPS MOMS Microphthalmia, Anophthalmia Parent Support
PA Parents of Blind Children
People with Persistent Hyperplastic Primary Vitreous (PHPV) Unite!
Little Four Eyes – a group for parents of young kids in glasses
Feeding Tube Awareness
I don’t know how much of a care package you can assemble for a parent who has a newly diagnosed child but I will try.
A Baby Wrap or Sling
Get a really good baby wrap or sling so you can wear your baby. You don’t have to be a “crunchy earth mama type” to babywear these days. It is so good for babies – especially blind babies! Babies feel the motion of your body and gets tons of information and sensation when you are wearing them in a sling. All babies need and crave stimulation. Babywearing is a great way to give it to them! Read this informative article from the La Leche League.
I carried Tommy constantly and it didn’t spoil him! A child that has lots of medical intervention especially needs the physical reassurance they get from being worn or carried often.
Tom had many surgeries so we needed:
wide medical tape
extra eye shields
No No’s – To keep them from disturbing surgical sites.
Gatorade or Pedialyte
You get a lot of info thrown at you when meeting with doctors. Take notes!
Tom has quite a paper trail. You will want your own copies of medical reports, insurance authorizations, and hospital bills. I keep everything and it has saved us more than once.
You are going to be busy so you will need a calendar to keep all the appointments straight. I know who Tom saw and when he saw them because of my calendars. I keep all my old calendars because they are full of notes and information. Try to write everything down as it happens. You will be so glad you did.
Awesome Family & Friends
Everyone needs support. I am very lucky in this department and I know it!
The final thing a family with a newly diagnosed blind child needs to see is this.