Question for Married Couples

S.-

I was in a situation very similar to yours to be honest. I have been divorced now for many years.

I would suggest a few things!

1). If you have qualified for respite care, find another 'carer' ASAP.

2). There are many churches that have 'special needs' ministries. Google them for your area and REACH OUT TO THEM!

3). Get into some counseling FOR YOU! Perhaps your husband will join in later...perhaps NOT...but it is VERY IMPORTANT for you to have YOUR thoughts/feelings sorted out.

4). Carve out consistent time with your husband ANY WAY YOU CAN! Period. Without fail. NOW.

I will only add a few things...

The divorce rate for couples that have had a child die is staggering. I imagine the rate of divorce in couples with a very challenged special needs kiddo is much higher. I will research this personally when *I* have time to pursue MY PHD.

I followed through on 'all' of the above. In my case, it did not work out. BUT, I do know I tried as hard as I could. That helps me a LOT to know I tried so very hard.

Please feel free to PM me. My 'special' kiddo was 18 recently. She had challenges with 'potty training'...eating by mouth...etc. She has come a tremendously long way. I hope the same for YOUR 'special' kiddo as well!

Baby steps.
baby steps.
It is not a sprint...it is a marathon!!

Best!

I'm wondering if where you went wrong with hubby was calling it "counseling." Instead, ask him to go to a support group with you so you and he can see if others have any suggestions on how to make things easier/better or just how to cope. He may be more open to "suggestions" than "counseling."

I wish you and he all the best. This has to be extremely difficult. Hugs and prayers for your family!

Wow - You are dealing with so much - my heart goes out to you and your husband and your commitment to your family.
Yes - I think sometimes that after all the exhaustion of the day-to-day, working full time, raising 2 kids, commitments to family, to community, school, church, etc., there's not much left for each other at the end of the day. But remember, doing it without a partner is more than 2x as hard. Divorce is probably not a great solution. Remember to appreciate how hard you both work at supporting your family.
Bottom line is: you NEED to invest in each other, as a couple, and as individuals. Counseling might be good, but it might add one more obligation to your plate that you may start to resent. Try on your own to do some basics. Get your respite care person identified, and a backup. That's absolutely necessary. That seems like it needs to be priority #1.
Then, try to plan what you need - be specific. Map out your week, and schedule your downtime or your couples time. Even if it's small windows- write it down, so you don't forget. This could be: Monday evening is your night off, and husband takes care of kids, bed, baths, everything. You go meet a friend, get a massage, go to the gym - invest in yourself! Identify a similar night for you to do it all, and give husband the night away. Also, figure out when your "shift" ends. When kids are in bed, give yourself 30 mins to get a few things done, and then clock out for the day/night. Then, maybe twice a week, after kids are in bed, spend even 15 minutes together. Hug, have a glass of wine, read books, maybe talk, maybe sex. Anything, as long as it's downtime - not taking care of anyone, planning logistics for the next day, or talking about the kids. Maybe even get a joke book, so you remember what it's like to laugh with your spouse. You can even do this with your other kids, so they do feel like they're getting undivided attention, even if it's in little increments once/week. All of those small little investments will add up.
SO that you don't get caught up in the day to day, and erode your plan, figure out in your weekly schedule how you can optimize your logistics. Example, cook all the components for your meals on Sunday. Figure out 1 day a week you can short cut your efforts: frozen pizza and salad once/week probably never hurt anyone. Speed clean only what is necessary. Figure out how the other kids can help.

How to take care of your marriage when you have a child with special needs

http://www.washingtonpost.com/news/parenting/wp/2014/02/1...

I think there are a lot of ups and downs in marriage, but your situation is unique.

I think your biggest resource is going to be your voice.

You need to let others know you need support. Let neighbors know, pediatrician, school social worker (if any of the kids are in school), your local school district, friends.....that you need support.

I also agree with Cheryl to call it a support group. Or you can also ask him to go with you, and let him know he doesn't have to talk. Even if he sits silently in the session you both will benefit. Once he sees that you are benefitting from the counseling and that it is not to blame him, he will start to open up.

It is okay to attend on your own also.

Also just throwing this out there bc you never know.....I used to work at the kids room at a gym . I was a member (after a rigorous Q&A with the lady who ran the room) for awhile, and approached me to work there...the bonus? No dues and kids got to go to work with me. Long story short...she was a former special ed aid who burnt out from the politics and just loved kids. She had a special needs kid of her own (now an adult). Word got around to the moms and we had special needs in our kids room REGULARLY bc the parents felt safe. We had couples work out together, grab a fruit juice together, and yes plenty who just watched tv or read a magazine. We were their only down time, so we did what we could to help them maximize it. Kids could stay in the room for two hours max. And of course parents on premises. But it was an outlet, and sometimes all they had, and yes sometimes they came in the am and in the pm.

She also babysat for these families outside of the gym. She knows the struggles and did what she could to help.

So getting the word out can be helpful, and in this case they got someone to babysit and connected to a community.

Hope this brings a little hope to you :-)

Sadly the owner of the gym (not the lady) decided to no longer allow workers to bring their kids so I had to quit.

Many, many, many hugs to you and your family.

I also found this link. It has respite info towards the bottom

http://ucpkc.org/resources/

You guys need support. I think it would wear on ANY marriage. That's a lot of stress. Where can you find help? Not sure if moving is an option but I would sure try to move closer to family for the emotional support if nothing else. You have some great suggestions below, I just wanted to offer you my support and a virtual hug...

This is a tough question, because it's not a normal situation for married couples. You have a unique situation, caring for a child with special needs.

I would recommend that you reach out to community resources for families with special needs kids. There might be volunteers who are willing to come and help you out a few times a week, even for a few hours so you and he can have a date night. Find out if there is a home health nursing service that is covered by medicaid or disability. There might also be support groups for parents of children with special needs, where you can go and learn new techniques, or even swap childcare for an evening every so often.

If anything, go to counseling on your own. Sometimes, just having an uninvolved 3rd party to listen can be helpful to your emotional well-being.

I would go by myself to those classes if *I* needed it. I would bring home the information you find especially useful. You may also need to find individual counseling for yourself. Perhaps you going through that effort will show DH that more is needed. My DH brushed off my suggestions that one of his children receive counseling. I don't know why, other than he didn't think the child needed to be "fixed". As an adult that child now seeks out counseling for depression. Sometimes a woman's intuition is right, even if a man won't see it.

I do agree that a respite care provider is necessary for you both. I would use that care as both time to reconnect to each other, and to evaluate things within your household. Perhaps also take time to do things with your other children so they are not caught up in just what their sister needs.

There was a time when DH was looking for another place to stay. The stress had reached a breaking point. Sometimes marriages hit rocks but are otherwise good. We found the good and are rebuilding, slowly. You need to find your foundation again.

Marriage is hard, especially if you add a situation like the one you are describing.

But communication is key. If you cannot communicate properly, you can't resolve even the simplest things without conflict and hurt feelings. Your statement, "learn how to work together instead of against each other" speaks volumes. With proper communication techniques, this should rarely happen.

I don't know if the poor communicator is you, or your husband, or both; however your husband's dismissal of your concern with "I don't need counseling" leads me to believe that it's more him.

My husband's communication style is what I would describe as 'teenager', and it has evolved very little over the years. It's incumbent upon all of us to continue to learn and grow in life. Now that our kids are grown and our relationship is worn to a thread, my husband is finally trying to learn, but sometimes it feels like to little, too late. In hindsight, I wish I'd forced counseling sooner.

But if you have the kind of husband who is going to bail if you force things, then it's problematic. I don't know what to suggest, but I agree with you that some kind of counseling or communication course might be very useful. It's entirely unnecessary, and very harmful, to "work against each other" your entire relationship.

I like Cheryl's idea of calling it a support group.

Good luck with everything.

Yes I feel this way sometimes. Especially during times of outside stress. We just had the s--- hit the fan with our car, and we just about got a divorce over all the stress it put on our marriage. You have stress all the time it sounds like. It isn't fair to your marriage. Definitely get some help with your daughter, that will relieve the stress.

I'm sorry your husband won't go to counseling with you. You should go on your own. I definitely think it would help if you could connect with other moms of special needs kids. Do you have any support groups, that could make a big difference for you on a personal level.

To be totally honest, sometimes I do. I sometimes think that if he was not there, my life would be a little less stressful, things might be a little easier. I have 2 boys with bleeding disorders. While they do not have major problems--and I knock on wood that this continues--he pushes it off. I take care of E V E R Y T H I N G. He may clean now and then , usually when he gets mad about something and will talk like none of us do anything. But I do know he loves the kids and me. I know that his way of dealing with things is how he handles this. If you can get counseling, then go by yourself. At least it will give you some insight in how to handle things. See if there is a community that helps advocate for and has meetings or talks about the issues you are having. Even if you cannot go to meetings, newsletters may help.

I feel your pain! Every marriage has stressors (money, work, bills, etc). But, other stressors, like special needs children, major accident/injury, deployments, can really wear a couple down. We also have a special needs child. We've noticed that friends in our special needs community go one of two ways...it makes their marriage stronger or tears it apart.

"Counseling" can be threatening--especially to men. Does Children's Mercy offer seminars on 'Parenting Children with Special Needs' or anything like that? We lived in KC for 6 years and belonged to a great support group through Children's Mercy (Congenital Heart Defects Families). We met every other month and had guest speakers.

Hang in there!!

Oh, my! I will tell you about my experience.....if you are neglecting time together as a couple, I think you will eventually fall apart. My marriage is. We have 2 kids, 8 yrs apart, so it was a bit of culture shock when we had baby #2, with baby #1 8 yrs old. Our problems weren't all about the baby, but our schedules stunk...I work a rotating shift and he has a day job but is on call a lot of evenings for tows and service calls. He is having back issues, so is in a lot of pain and nothing has helped yet. So, after I worked all day and took care of the girls, I was exhausted. He's exhausted from being out late the night before, or hurting, ect. Unless you and your husband get some time to yourselves, it will wear you both out. He needs to know you still love him. My husband and I got to the point where we felt like roommates, too. In comes an affair. That is a whole lot harder to repair than just neglect.
Until you can schedule good time together, work on these things:
1. Communicate....about big and little things...ask about his day, daydream about the future, ask about his wants, needs, desires, and goals, ect. Share a laugh with him.
2. Read the 5 Love Languages and learn yours and his and make sure you are talking to each other so the other can understand. (my husband and I were loving each other in our own way but neither of the other could see it because we speak different love languages)
3. Spend couple time wherever you can fit it in....grocery shop together w/ a babysitter at home or something like that.

We are seperated....because I thought things would get better over time. I took him for granted that he'd always be there. Life made us drift apart and I was not deliberate about doing stuff to keep us together. To his credit, he asked me for couple time, but I wanted family time. It's not the same. God willing, we'll make it thru but it's going to take a lot more work now that the affair has occured. Tricky ground.

Blessings,
J.