Welcome to the fourth and final installment of our series on parenting special needs kids. This week, Jill Hanon, our PVMOM special needs forum moderator, gets real about the strong emotions that often come with the parenting process. You can find the previous installments here:
Part 1: What to do when you Notice Developmental Delays
Part 2: When your Children are too Old for AZEIP: DDD, Developmental Preschool, and IEPs
Part 3: Advocating for your Special Needs Children
Erin: Some parents describe going through shock, grief, or guilt when they realize that their children face extra difficulties. What was your experience, and how did you get through it?
Jill: It was hard. But I’m the kind of person who says, “It is what it is, let’s just do what we have to do.” Just tell me what it is and what I have to do, and I do it.
Erin: What has been the hardest part of parenting special needs kids?
Jill: The hardest part was about a year into it after their diagnoses. It was so tiring. The kids were melting down and having regressions. I felt despair sometimes, and would cry myself to sleep. I would think, “He’s never going to be normal but he’s going to be expected to be normal.”
Erin: How did you get through that time?
Jill: You just go through it. And you see progress. You see a path ahead. You focus on the little bright spots and the things that make life easier. Like for us, I made a giant schedule in the kitchen to keep track of everything. You remember that you are not in it alone. Get with people who can tell you, “You’re going to be okay. There is a light. You just have to keep going.”
Erin: What other advice do you have for people walking this path?
Jill: Get through the process of dealing with the emotions of the diagnosis as soon as you can, and start working on how you can help. Go lock yourself in the bathroom and cry it out when you need to.
Erin: How does parenting special needs kids affect marriage and co-parenting?
Jill: Sometimes one parent handles most of it and the other doesn’t really see it, or maybe accept it. I recommend that both parents stay involved in the appointments so you are both fully aware.
Erin: What advice do you have for keeping your relationship strong?
Jill: Communicate! Tell your spouse when you are at the end of your rope. Find time for yourselves. If your children are in DDD, you may qualify to receive respite care. Take advantage of it.
Erin: Jill Hanon, thank you for sharing so much of your heart, your wisdom and your experience with us this month. I know you have helped encouraged many families.
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