Having 4 children of varying ages has its obvious challenges. And when two of those children have developmental disabilities, the challenges become a little bigger, the hurdles a little higher, and the need for a positive outlook a little more important.
Harold and Mari, parents of Julian, age 10 who was born with Down syndrome, and Jacob, age 6, who is on the autism spectrum, are here to tell you that life as you imagined it, may not be the same, but it is still rich with love, compassion and a plethora of rewards.
Together, they’ve learned how to deal with life’s ups and downs and rely on each other and their community for support. Their kids have taught them what unconditional love is, what sacrifice feels like, and the importance of faith and family in getting through each day.
They are open with their family’s story, their joys, and their struggles. They hope that by sharing their story, they can help other parents who may be having trouble adjusting to life with a developmentally disabled child.
When asked about how she gets through a busy day with 4 active children, Mari refers to what she does as “exaggerated parenting.” She’s doing the same things as other parents, but everything is just a little bit tweaked; knowing whatever she has planned for the day, may change in a heartbeat. Her friends have come to understand that a parent who has kids with special needs may need more time to plan, may have to repeat things more often, or simply be flexible enough to adjust and improvise.
Harold wants people to know that it’s important to be patient, understand that everyone’s life is filled with constant change and uncertainty. That said, he reminds himself to enjoy the moment. Whether good or bad, enjoy it and know that you are blessed to be a part of a loving family.
They both agree that there is a certain pressure to compare your children with others. They stress the importance of letting your expectations go, to push your kids to be the best they can be and enjoy the ride. They also agree that taking time away from caring for a child with special needs is an important part of maintaining a healthy outlook and a happy family.
That’s where UCP’s Family Respite comes in. Respite provides Harold and Mari with a time to replenish, rejuvenate and spend time with each other. “The divorce rate is high for couples with kids with special needs. Having a support network you can rely on is life changing. We make sure we have a date night so we can reconnect. It may be as simple as a trip to Costco, but it’s time away, and that’s important.” says Mari.
“There’s a great level of comfort knowing we can leave the house with a qualified respite worker looking after our children. Handling kids with special needs is challenging, but UCP’s respite workers take that worry away,” adds Harold.
We want parents to know its okay to be scared and unsure of what to do after learning your child has special needs, but don’t withdraw. There’s a wide variety of resources out there to help support you and navigate the road ahead. UCP’s Family Respite care is one of them. They understand, and they’ve been by our side, allowing us to thrive as a family.
Reach out to them if you need a rest. It’s a break you deserve to take.