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Nicole is a mom of three.
Do you work outside the home? If so, what do you do?Save Save Save
Part- time children's librarian
What do you do to relax?
Drink wine, knit, drink more wine
What benefits has Connecting for Kids brought to you and your family?
Parent connectivity, a safety net in which to vent, share, find inspiration
Which have been your favorite Connecting for Kids resources?
Coffee and Chat, Teach Me to Play
The best thing about parenting a child who struggles is...
The best thing so far is the circle of kindness and empathy that has grown as a result of our son's condition. We set out on our parenting journey looking for a new purpose, for a challenge and a change to the insular way we had been living in NY. Our son's birth solidified that our parenting journey would be as challenging as they come. We have become the "I don't know how they do it" class of parents. If it were a sport, we would be medal contending in Balancing Medications, division champs in Hospital Stays, and at least competitive in Adjusting Childhood Expectations. Our son began having seizures and was diagnosed with a rare condition, Cortical Dysplasia, at 5 months. As we later discovered, it also comes with a slew of other issues such as Autism, poor memory, cognitive delay, poor motor function, and vision problems. I'm not the sort of person who thinks that I was destined to become a parent of a special needs child. I don't think someone up there is doling out challenging children to those most in need of personal growth. But he has changed us as people to the core. Our son is growing our best possible selves wherever he goes. He is grooming siblings who will become empathetic adults in the world, cousins who might grow up to develop cures to diseases, grandparents with a new found capacity for learning and patience. He may not grow up to be all that we hoped for in a child, but he has grown fierce warrior- parents who will champion empathy and acceptance on his behalf.
What I worry about most…
I worry most about who my child will be. Most parents have a set of given expectations for a child -- that they will make friends, go to school, fall in love, get a job. Nothing is clear with a special needs child, no future assured. Will he live with us forever? Who will take care of him? Will he always be like this? I wish I could see his future, assure myself now -- but a hard lesson in this kind of parenting is that it is a slow road with no quick or easy answers. Not unlike the worries of many parents, just with a few added uncertainties.
The bad habit I picked up...
Way too much swearing and wine drinking. Boy do my kids have a colorful vernacular. And we buy wine by the box.
We'd love to know if you have any go-to resources such as blogs, websites, or books that we can share with other parents.
Uniquely Human: A Different Way of Seeing Autism by Barry Prizant was a great new way of looking at and accepting our son's ways of self regulation.
Is there anything else about your journey that you would like to share with other parents?
It gets better. Then worse, But then better again.