Today’s guest post is by Raven Green.
Jennifer S., a military mom with a special needs daughter and 2 other children is married to a Navy captain. Their daughter, Kaitlyn, suffers from cerebral palsy, autism, epilepsy, and scoliosis. She gets much needed therapy with horseback riding, which helps to prevent her spine from curling badly enough to crush her lungs. That can lead to suffocation – so this is a critical therapy for her. It’s also less costly and more effective than any other therapies she receives for her disabilities, but the government has revoked the family’s Tricare coverage and is also making them pay for sessions that were previously covered, despite a court ruling in favor of them.
For 2 years, this family has been struggling in the courts, so Jennifer took her case to Congress.
She is trying to get “Kaitlyn’s Law” passed – a bipartisan bill that guarantees military families who are covered under Tricare will receive coverage for therapy that special needs children and wounded warriors need.
Following is Raven’s interview with Jennifer:
- What are your child’s special needs? Severe global developmental delays due to congenital brain malformation; CP; Scoliosis; Epilepsy.
- Please share your journey as a special needs mom: Kaitlyn was diagnosed at 7 months old but I knew something was wrong much sooner but no one, including the pediatrician were concerned. It was a true grieving process. At the time I thought I’d never make it. But now I am a better, stronger person.
- What has been the greatest difficulty/challenge you have faced in parenting a child with special needs? During the toddler years comparing her to typical kids. It was gut wrenching. I rarely do that anymore and just love her for the sweet little person she is.
- What advice would you give other special needs parents? You are stronger than you think you are. Give yourself time. Definitely reach out to other special needs parents.
- Why/How do you advocate for your child and/or other children? I don’t take no for an answer if my child’s needs are not being met. I started Kaitlyn’s Foundation to help fund physical therapy using the horse while we work to clarify the law thru Congress.
- Struggles/Achievements/Overcoming obstacles – I had to go through a long process to accept and be at peace with the fact that he will need care for her entire life. I will be her caregiver as long as I am living.
- How your child does’s other parent deal with the diagnoses and help? He is very supportive and always tries to be the “big” things when we need him.
- How do you take care of yourself and your marriage? I struggle with this one. I was just diagnosed with fibromyalgia but my kids’ and husband’s needs come first. I try occasionally to schedule date nights when we can.
- What has been the greatest difficulty in dealing with the military as a parent of a child with special needs? No respite care because of our situation with waitlists. When we move we start at the bottom of the list in the new state.
- Advice you would give to a new military spouse– Be very independent so you can handle problems that arise with as little stress as possible while your spouse is gone. Reach out to other military wives. I have made lifetime friendships with many other wives.
- Best base/Worst base for special needs: Best- Brunswick, NE, Great special education, no waitlist for Medicaid waiver and we LOVE Maine. Worst- New Orleans, The special education is horrible and was cited by the federal government for noncompliance with IDEA.
What can you do?
The Samuels family created Kaitlyn’s Foundation in partnership with Rocky Top Therapy Center to support special needs children in military families who use horses for their physical therapy. The Foundation also creates awareness about insurance coverage for military family physical therapy treatments. Kaitlyn, the Foundation’s name sake, was born with severe congenital brain abnormalities and suffers from severe scoliosis. Physical therapy using a horse is Kaitlyn’s life saving method of treatment. Spread the word, support the cause, and donate to help these kids with special needs lead a better life!
- Donation address: Kaitlyn’s Foundation
c/o Rocky Top Physical Therapy
660 Keller Smithfield Road
Keller, Texas 76248
Connect with Jennifer:
- Twitter: @KaitlynsFDN
- Website: www.kaitlynsfoundation.org
Author Raven Green aka Ms. MommyHH6
Raven is a military spouse and mom of two. She is a freelance writer and advocates for special needs military families. Her oldest is diagnosed with ADHD, SPD, speech & language delays, adjustment disorder and is on the Autism Spectrum. Raven is the author and editor of Ms. MommyHH6, a contributor at Mom-Spot and Special Happens and more. She was named to the Top 25 Military Mom Blogs of 2012 and 2013 by Circle of Moms, Top 25 Parenting Blogs of 2013 by UKnowKids and 2013 Fort Lee Military Spouse of the Year by Military Spouse Magazine. S
