Four years later, when I received that letter, it was almost comical to read how I thought things would unfold...I asked myself several "fabulous" questions-Did I get married to the guy I was dating at the time I wrote the letter? (um, definitely no, but I was married to the man of my dreams), How was college in Tennessee? (didn't end up going to Tennessee, stayed in Cincinnati for college), Are you teaching at the college level? (no, I was interpreting for deaf kids at a vocational school). Here's the best...I told my future self that it was probably time to settle down and start thinking about kids (we already had a 3 year old).
Is what I thought 'should-have-been' any better than what I had? It certainly would have taken my life in a different direction, but what I have is pretty sweet. The grass isn't always greener...I wouldn't trade the life I have for the world.
By the time we had our third child, my husband, Kevin and I had faced small challenges with our first two. Our oldest was diagnosed with a bleeding disorder at ten months, our second child had a rather complicated entry into the world, but those were small potatoes. Our third child was different. His potatoes were big. What I will NEVER forget is our reaction as his parents. We both reacted very differently, we both thought the other was wrong for the way they reacted. I started out with the crying and the "why, God, why?" and the "woe is me," he started out with "the doctor is wrong, he doesn't know what he's talking about." We didn't have much common ground in our reaction; therefore, we didn't support each other very well.
It happened that around that time, we signed up for a class at our church taught on the book The 10 Commandments of Marriage (Young, 2004). It was taught by a wonderful couple, Tim and Twila, who were several years older than Kevin and I. They had a child with a physical handicap, and I always remember having such a respect for them-their marriage looked so strong and they didn't seem to be so frazzled when it came to parenting their child with special needs. I think our pastor may have tipped them off that we were going through a diagnostic process, (that was a closely guarded secret, we didn't want people to know that our children weren't "perfect") because they took a special interest in Kevin and me. I will never forget when Twila looked me in the eye and told me that the divorce rate among parents of special needs children was double that of the normal population. Then she gave me the best advice I have ever received: she told me to guard my marriage.
Judy Kirzner is one of the first authors I've seen address the stress parenting a child with special needs puts on a marriage in her book Help! My Grandchild Has ADHD (Kirzner, 2012). The stress on the marriage is real, but these marriages aren't supported by the doctors working with the child. Most doctors fail to recommend counseling for the couple when a diagnosis is given. Only friends and church family who have walked the road of special needs parenting understand the marital strain, and sometimes they don't reach out. Many times, these special needs marriages suffer in silence. I can tell you that we have put our children first and our marriage second because we thought that was the best parenting move. We've made mistakes that have taken a toll on our marriage and it's hard to admit that your marriage is less than perfect. Plus, it just makes you feel more guilty when you admit the reason your marriage is suffering is your kids and/or how you are parenting them.
Kirzner identifies the stresses in a special needs marriage as follows:
- Parents might not act as equal partners in raising a (insert special need here) child
- Communication Problems
- Money Strain
- Alienation/Isolation/Disconnection
- Exhaustion
- Depression and Self Esteem Problems
- Intimacy-emotional and sexual
Kind of sound like the stresses you might encounter in a "regular" marriage...but when you throw in a special needs child(ren), what you get are the issues of a "regular" marriage on crack. Your problems are intensified; the demands for your attention, time, and money are greater; the number of people who have "been there, done that" fewer.
So, let me tell you what I've learned:
- You and your spouse will react differently, and that's okay. Find some common ground and support each other the best you can.
- Remember that your thoughts are probably no worse than your spouse's and admitting them out loud to your spouse may make you feel better or bring you closer together.
- When you look at your spouse, remember that you love each other-even if that love feels distant.
- Choose to trust that you both want what is best for your child and your marriage. Choose to give your spouse the benefit of the doubt in every area of your marriage.
- When you are scared, mad at the world, feeling lonely, etc., don't lash out at your spouse. He/She is probably the one who can best relate to how you are feeling.
- When (notice I say when) your spouse lashes out at you, try to get to the heart of what's bothering your him/her (probably not the dishes in the sink-maybe it is the feeling of being out of control) and try to ask questions of how you can help. (If it's a control issue, perhaps you can ask "is there anything I can do to make things feel less out of control?") Then follow through. That is a sure fire way to let your spouse know you are listening and that you care.
- Be direct and tell your spouse what you need. (I need to talk and just have you listen, I need to take a shower for the first time in a week, I need to take a nap on one of your days off work, I need to escape one evening a week and go somewhere and read, I need to know more of what goes on when I'm at work, I need you to consult me before implementing a new discipline system, I need you not to hit on me every night at bedtime, I need more sex). Our spouses aren't mind readers-if you are clear with what you need, and your spouse fulfills that need, what do you have to lose?
- If you would both be comfortable, join a support group where you can share and learn from other couples in the same situation. If only one of you feels comfortable in a support group setting, one can stay home and watch the kids, and one can go to the meetings. (this is the important part) Come home and share with your spouse what you learned and how you feel. Sharing and communication are key, you can both get something out of the experience without both being there.
- Date each other. I can't tell you how many times we were told to use respite care, get away, go on dates, get out of town for a night or a weekend. Full disclosure, we didn't do this. Maybe it would have been helpful, but we were sinking every available dollar (and some unavailable dollars) into therapy and care for our son. We thought it would be selfish to use money, that could be used for services for our child, for a weekend, or a sitter, or a date night, or (gasp!) marriage counseling!?!
- Find a couple who has been down this path before you that is willing to speak openly. We were very blessed that Tim and Twila reached out to us. I don't know that we would have been comfortable doing the reaching.
Please don't think that our marriage is perfect-it's not. It is a work in progress; but one thing we have committed to is to keep working. We have decided that our marriage needs to come first. Our love for each other came before our love for our kids-raising kids is something we have decided to do TOGETHER. Our marriage is a special needs marriage, based on our special needs kids.
Be sure to check back for my next post 'your special needs family'
See the books I mentioned here:
No comments:
Post a Comment