Monday, March 29, 2010

My Relationship and dealing with autism Part I

Sunday is a Guest Contributor for today. When Nolens Volens offered this topic I thought of her. I really only know of her through twitter and one day she posted an About Me page for her blog, I clicked on the link and was moved by her story. I asked her through Direct Message if she would be interested in writing her story here for us as a female perspective on how a relationship is effected by either raising a child with a disability or having a spouse with a disability. She said she would and has also admitted how difficult it came to be for her to write it and we had to break it up into a TWO part series. So Part I is posting today... then Nolens Volens is doing his perspective tomorrow and then I am going to post her Part II on Wednesday instead of Group Therapy.

As a parent of 2 children on the severe end of the autism spectrum I am often asked how my children's special needs effect my marriage?

My answer... Which one?

Every parent of a child with autism has heard the statistic of Dr. Colleen Allen that warns us 86% of our marriages will fail under the stress of dealing with the ins and outs of living with a child diagnosed with autism. What is most interesting to me is a number of autism acceptance bloggers and organizations have attempted to locate the actual data Dr. Allen collected to prove her statistic and have come up empty. Because there is none to find.

However, another engaging study done by the Easter Seals Organization offers, "quantifiable information that families living with autism are significantly less likely to be divorced than families with children without special needs." In addition their Easter Seals: Living with Autism Study found that of those who have divorced only a third felt the stresses of managing the special needs of their child(ren) had anything to do with their divorce.

So, what does cause divorce in families affected by autism?

I can't speak for every couple but I know in my own marriage and eventual divorce the causes were very similar to couples who have not parented a child with autism. Including:

  • Lack of communication

  • Loss of initmacy

  • Feelings of inadequacy and being unappreciated

  • Hurtful words and bitterness

  • Financial woes

  • Religious differences

Any one or two of these issues in a marriage can leave its foundation rocked and cause an eventual crumbling. If I am completely honest with both myself and my readers I would say we had all of the above in place long before the birth and diagnosis of both of our sons.

The boys Dad ("B") and I had a fair amount of yin and yang from the beginning. I had always felt that being different kept things interesting and that opposites are always attracted to one another. And they were... for awhile. He had a JD degree and worked as an attorney, whereas I graduated from high school but didn't make it past the first semester of college. He was very active in local and regional politics but the art of debate and campaigning bored me to tears. I was a social butterfly and preferred to be out and about and always going places while he most enjoyed staying at home and reading or blogging on his laptop. I wanted to travel and see the world or be outside enjoying the local parks and hiking trails and B was always concerned about money and his job and building up a clientele. It was a couple short years before our differences starkly outweighed our similarities.

Just before our fourth anniversary we had our son, Samuel. It was a difficult process of getting pregnant, staying pregnant, and enduring a high risk pregnancy. These three stresses on top of the ones we already had in place were further straining our relationship and marriage. I had always dreamed of being a stay-at-home mom. B preferred to work. A lot.

Looking back I realize that the responsibility of providing for a wife who was no longer working and an infant were a very big stress for him. But, B had always thrown himself into his work. Prior to our having children it was not unusual for him to pull an all nighter either at his office or in our home preparing for a case. It seemed he never slept and when he did it was for very short periods of time. B was consumed by his job and so I spent my time and energy caring for Sam.

Sam was diagnosed with severe autism when he was 19 months old. The stress of having a child with special needs was only the tip of the iceberg of our expanding marital issues. B continued to work very long hours to support our family and I did the best I knew how by throwing myself into searching for answers and attempting to hide my grief over Sam's diagnosis. I often felt guilty for the grief I felt and very much alone in it. I would try to voice my fears and concerns to B but the responses I would get varied from his trying to reassure me or advise me on how to deal with the stress. What I most wanted was for him to be heartbroken with me, even if just for a moment. It was a dead end emotional roller coaster and I felt like I was the one running it.

Noah was born on March 21, 2005 and was developmentally the complete opposite of his older brother. He met or exceeded every one of his developmental milestones and both slept and ate easily.

During Noah's first year my husband resigned from his job and began working in the District of Columbia. The money was quite good compared with where he had been but the trade-off was a commute of almost two hours each way six days a week. Most days he woke before 5 a.m. and did not return home until after 11 p.m. For the next two years we hardly saw each other except on the weekends. He was physically exhausted from working almost nonstop and had become almost robotic in his schedule while I was left feeling completely closed off to the world and very much alone. We were like strangers sharing a house and caring for our sons in the best way we knew how.

Just before Noah's second birthday I had begun to notice a shift in his development. He no longer made eye contact, he didn't respond to his name and he had completely stopped talking. I raised my concerns to B and we agreed that having him evaluated was for the best, if only because of Sam's diagnosis. Friends and family thought perhaps he had learned the behavior from watching Sam. He hadn't. Noah was diagnosed with autism on the severe end of the spectrum when he was 26 months old.

By the time Noah turned three years old I was so emotionally and physically exhausted that all I wanted to do every night after the boys feel asleep was lay in bed, drink a glass of wine, and fall asleep. I had no energy or emotion left for being intimate or staying up late when B got home from work. It felt like when we did talk it was always about the boys, our precarious finances, or how much harder the other one was working and our frustration that the other didn't acknowledge it. I was tired of feeling like a single mother and I would imagine he was tired of feeling like an unappreciated paycheck.

Our marriage had weathered so much up to that point: Infertility, 2 high-risk pregnancies, religious differences, the unexpected death of my mom, financial difficulties, 2 diagnoses of autism, his grueling work schedule, and my mounting unhappiness and feelings of inadequacy as both a wife and a mother. I felt like I couldn't be both. I could either give 100% to my children who each needed all of my attention at the same time or my husband who much of the time acted as if he didn't need me at all.

In November of 2007 I told my husband I wanted a divorce. I know he was stunned and maybe a bit shocked. I had always avoided conflict of any sort like the plague. I never felt like I could adequately express myself when we had a disagreement. I was always left feeling belittled and unworthy of my feelings. The most difficult part was admitting to myself that I had not felt loved in a very long time and that I was okay with that because I didn't love him anymore either.

Almost immediately I felt a weight lifted from my shoulders. B began sleeping in the basement and I slept in the master bedroom down the hall from the boys' rooms. Now when we spoke it was without emotional upheaval. It was very businesslike and I was finding my own voice in the midst of the changes. The following few months were not without stress of their own as I prepared the home to sell and began the search for a new place to live, possible school changes, and preparing the boys and myself for what being a single mother really looked like. Our home sold quickly and by April of 2008 the boys and I were living in a local apartment complex.

It has now been almost two years since our separation I can easily say that autism was not a factor in the end of our marriage. I believe the true fault line that separated us was in place long before our boys were born and eventually diagnosed with autism. Raising children with special needs certainly added a degree of stress to our lives but the real strain was caused by our divided priorities, our failure to come together as a couple to work through our problems, and the end of our being able to communicate respectfully and lovingly with one another.

Today the boys spend every other weekend and one overnight a week with their dad and the remainder of there time with me. B and I talk often and many times at length over the boys' futures, their school performance, and our goals and hopes for them. We attend their I.E.P. and doctors appointments as a team and when we celebrate a birthday or other holiday we often do so together. When we ended our marriage we both realized that it did not end our relationship with one another in relation to our children and that for their sake it would be most important to co-parent positively with one another.

Our boys have remained rather unfazed by our separation and divorce. In some ways their autism was a blessing. I have many friends who have children who were emotionally traumatized by watching their parent's arguments, court battles, and dramatic hand-offs for designated weekends and in result have had to endure much more pain and anguish than any child should ever experience. Our boys are the same emotionally as they were in 2007. They show no signs of sadness over our living apart and if anything look forward to the change in scenery that going to "Daddy's house" or "Mommy's house" provides them.

Our children are happy and thriving amidst our separate, yet united environments and really I think that is the most important thing of all.

Shelle Edit: Who out there has been through a similar experience? How did you guys work it out? Or for those of you who haven't been through this experience what are you feelings on how it panned out for her relationship?

Sunday can be found blogging about her day to day life with Sam and Noah and her status as a second time Newlywed at


CaneWife said...

What a touching story. Thank you for sharing.

Anonymous said...

I have not been through this experience, nor do I ever hope to and I pray that I never do.

However, I wanted to comment and congratulate you on doing what you felt was best for you and for your children. You stood up for yourself when you needed to. That in itself deserves a high five or a hug.

I noticed, and maybe it's just because people can only write so much lol, but when the two of you seperated, it seemed you also communicated better. The fact that you two can parent together while being apart is wonderful.

Anonymous said...

I got nothing really. Excellent post. I, like Alex, hope that is a hill I don't ever have to climb.

~Shelley~ said...

Excellent post. I had always heard that most couples divorce when there has been an autism dx. Me and my husband talked about it, and wondered why? A child psychologist from the County had told me a few years ago, that most fathers are, or remain, in denial, and that puts a struggle on the marriage. (I don't know how much truth was in that statement she made?) Our marriage has actually grown stronger because of the dx. We have formed this "Mama Bear and Daddy Bear" team, and have worked together to get our son the best therapy and services that we can. I couldn't imagine doing everything by myself.

You are a great mom, Sunday! Good for you for finding your peace, and the strength to take care of your sweet boys!


Lisa said...

Sunday I'm glad to hear that you and the boys dad get along so well after divorcing. In so many instances that is not the case and it feels good to read that it's not always the case.

Anjeny said...

This is a very heart warming story..thank you so much for sharing.

I'm thinking that you've made the best decision with the divorce, it seems like you and your ex are communicating better, both are taking on the taking care of your boys whereas before you were completely alone.

I don't have any kids with this disability and I can't even image what it would be like having one let alone having two kids with the same disability. I will say honestly that from reading all that you had to go through and the fact you're still going at it, I have total admiration for your stalwart strength in all this. Again, thank you so much for sharing this story with us.

Shelle-BlokThoughts said...

I absolutely loved this post, one because you write so well Sunday, but two because I learned so much.

Do you think you saw all of these retreating steps your husband took as a husband during it all and just tried to make it work anyway? Or is it more heresay because you were so wrapped up and busy learning how to raise your boys with Autism since there is still so much unknown about the disability?

You guys have to come back for part two! Such a good "ending" or new beginning :)

Sunday said...

Thanks so much everyone for your comments!

Shelle- I think I was so wrapped up in caring for the boys and trying to keep them from hurting either themselves or tearing the house apart that I both didn't notice their dad wasn't around either physically or emotionally for me.

After awhile I just stopped trying to engage with him and we both went into survival mode in our own way. For me that meant wrapping myself up in the boys and advocating for their needs and for him it meant working as many hours as possible to make as much money as possible.

We just couldn't be united to do it together.

Shelle-BlokThoughts said...

That's the perfect way to say it right? Survival mode.

Missty said...

Great post!! Thank you for sharing your story with us.

Just Jules said...

As you stated the factors listed for a divorce in your situation to me sounds like the factors that will end any marriage. I am glad you found your voice. The challenges you face must be many, and most I will never understand. Thank you for taking the time to inform us in this topic

Another Suburban Mom said...

This was a wonderful post. Shelle, thanks for bringing us an awesome guest.

I am glad that you and your husband have maintained such a good relationship while separate.

Anonymous said...


Thank you so much for taking the time to share your side of the story with us here at RW. You write beautifully.

I know several couples who have been through similar experiences, and there's one thing that all these testimonies make clear: If the couple isn't a team before the kids and their problems come along, then they definitely won't be a team afterwards. As you said, both tend to go into survival mode, and the relationship just stops. I've seen the opposite happen, and even then it takes no small amount of work and dedication to make the transition.

I wish you happiness and many years with your beautiful boys . . .

Dianna@KennedyAdventures said...

Another Sunday fan, just stopping by to say again how much I admire her strength and stamina.

Nolens Volens said...

I finally got to sit down today after a whirlwind of today and read your post because I wanted to know what YOUR perspective is on autism. I have few friends who are single moms with autistic children.

I enjoyed reading your post because you were very insightful and you didn't hold anything back. Kudos for your writing and coping with your children.

Sunday said...

Just Jules- yes, I agree that what ended our marriage are exactly the same things that cause other marriages to crumble and ours was already broken long before our boys were born and diagnosed with autism.

Dianna- bless you darlin! I admire your strength and stamina considering you are a mom of twins. I cannot even fathom the energy required to keep up with them.

NV- I tend to not hold anything back. At least not in my writing. However when I talk to someone in person I am very calculating about what I say and what I don't say.

heelsnstocking said...

My freind is going through this journey, he has just found out his son as aspergers and looks like his daughter has as well.

The relief of the diagnosis is huge as they thought they were doing something wrong but the gap in the relationship they have is huge because of the stress. Im sending him this post so he can see he isnt alone.

thanks for sharing xx