I am feeling so strongly that I should be offering resources regarding marriage and raising kids with special needs. It is REALLY on my heart, so here goes. (It is only two days post-Valentine's so I will take the liberty . . . .)
If you had any words of wisdom to offer another set of parents regarding marriage and raising a child with special needs, what would they be? I have thought about this a lot and have only been asked a few times, so you will see that I have been saving up for you, people! No, not really, but in our case, it has gotten better marriage-wise, the farther we go. (We had been married for 7 years when our little guy came along with Down syndrome. We have celebrated 23 years together now.)
In the beginning, it would have been good just to know that we would handle the news, the grief, and the adjustment differently. Just as moms and dads handle most things with their children differently from each other (no kidding, right?). Expecting your spouse to react and deal the same as you only creates a chasm between you. However, at the time, you have no idea this is happening and feel the big “disconnect”, which is a lonely feeling. Our guys are just different from us women. And they feel so responsible for us and for putting up a good front to be strong. Looking back, it is quite sweet, but at the time it was frustrating. Communication, communication, communication!
Some resources I have recently found:
http://www.disabilityscoop.com/2009/02/02/save-my-marriage/1972/ This is a woman who is a family therapist and who has a son with Fragile X. She really gets it, and this interview with her is great. She talks about the need for support and getting stuck in grief, which is what I think happened to me years ago. She has a yearly retreat called “Healing the Mother’s Heart.”
http://www.disaboom.com/children-with-disabilities/for-better-or-worse-and-kids-with-disabilities This is a good article which highlights some good communication skills.
http://www.focusonthefamily.com/parenting/parenting_challenges/parenting_a_special_needs_child.aspx This article even offers a 1-800 number if you need to speak with a counselor. They also have an online parenting community for parents of children with special needs.
http://www.amazon.com/Married-Special-Needs-Children-Couples-Connected/dp/1890627100 I know I have referenced this one twice already! I really am enjoying it, though. It has a section on “Heartfelt conflicts : opposing views on protection, expectations, and helping your child.” We need to keep looking for what will help us get strong and stay strong as couples!