Marriage and Autism

I am not , I REPEAT, I am NOT a marriage expert.

My parents got divorced when I was six months old and I did not see anyone in my immediate family have a successful marriage until I was in my late teens.
 
I tell all of my married girlfriends, I cant tell you what to do, but I sure can tell you what I have done that DIDN'T WORK.. because that's what my dad used to tell me... LOL !

One of the first things Mark and I did when we found out Xavier had autism was to attend a National Autism Society Meeting.

During that meeting we were told that the divorce rate for couples that have a child with autism is 90 percent..;-(
That was back in 2004.  More recent studies are dispute that number. Other research says its 80 percent, which is still a little better than before.

Needless to say, the ride home after that meeting was very quiet. 

I can honestly say I  see why the divorce rate is so high for autism parents.  Having a baby in a marriage changes the dynamics greatly. The mom changes her focus to the baby. Add in the dynamic that the baby has special needs and the focus becomes even greater.

It is also hard to have time as a couple when you have small children.  If your child has special needs its even harder.
Then you add in all the normal issues that most married couples face and we were having them all..!

Money issues, Jobs issues, Children, Different parenting styles, in laws, health issues and just about any other thing we could imagine.

After that initial meeting Mark and I decided that if we were to ever get a divorce, it would not be because of Xavier.
We decided that we would not blame him for our lack of effort to make our marriage work.

There has been times when our marriage has been shaky and once we even considered separating just to give each other a break.

With the lack of family support and adequate childcare for Xavier, we NEVER got a break from either of the boys.
Our logic was that at least if we were separated we could rotate having Xavier each week to give each other a break.

Xavier could be a handful.  He could be like keeping two children at once!!!!. He had to be watched ALL the time and he was quick! 
He had pica, which is a disorder where he would eat non food objects. I had to keep the house SPOTLESS and vacuumed constantly.
Plus he had tantrums still when he got over stimulated or could not express what he wanted or was just plain angry or tired. Then to add Jordan into the mix who was only 17months older, it was like having triplets!

Xavier had chronic diarrhea. Whatever he ate came out the other end as liquid. I was constantly changing him and his little butt stayed raw and irritated.  He did not sleep! He literally went to bed with Jordan at 9pm and was up again in four hours to stay awake the rest of the night.
Mark had gotten laid off and I was the only one working full time. He was working at night part time so I was up all night with Xavier and then off to work the next morning.
 I often laughed when people would mention us being on the TODAY show. The day the show aired, I had called into work because I was so sleep deprived I didn't trust myself to drive to work. I was asleep on the sofa since both boys weer at school and Mark was substitute teaching that day, I MISSED the ENTIRE THING! LOL !

Then I was having health problems. I started to notice that when I would eat,later in the day I would throw up and the food was not digested.I thought it was stress.  I later found that since Xavier was so big and I carried him for so long to 38 weeks, my stomach had been pushed up and part of it was overlapping onto my liver. 
It would have to be corrected as soon as possible as it was causing me not to digest my food and the part of my liver that  was under my stomach was not working properly. It would have to be surgically corrected.

When I look back at this part of our marriage I often become sad. The time I feel like we should have been enjoying each other and two beautiful little boys were were stressed beyond belief!  But I also see how God never puts more on you than you can bear.
                                                                           He sent us RAMS in the bush.
Leronda and her mom fell in love with Xavier, so outside of being a great ABA therapist,  she often offered to babysit him for us.
He loved being at her moms house so much that when I would come to pick him up he would cry..
My Godmother (Nana) would also keep the boys on the weekend sometimes as she worked full time during the week. I made sure when I used her it was for a good reason as I didn't want to wear her out.

Once Leronda stopped doing ABA with Xavier after school. Mark had found another full time job and since I had taken a Part time job with STEP, Inc, so Xavier's care became my main responsibility and it remains the same today.
I find that with most families with special needs children, especially African American families, the cost of specialized childcare is too expensive. Some places offer Respite under State programs, but you have to be below the poverty level to qualify.
Many times, family does not help and we were no exception.

We did not realize how bad it was until my mother got cervical cancer the year before we moved from Memphis.
She had to have surgery to remove her cervix.
She was a hour away at an Assisted Living facility and I had planned on taking the boys to school that morning and driving up to be with her and Mark was going to leave work early to get the boys from school.
But that morning Xavier got to school and the school called and said they "thought" he had ringworm.
 Really it was his kindergarten year and I had asked he be mainstreamed for part of the day with an assistant n the regular classroom and since the regular class room teacher didn't want him there they found EVERY excuse in the world not to work with him and today was no different.  I had to go pick him up...

I called Mark and told him I had to leave or my mom would be afraid to be put to sleep and if I didn't leave soon I would not be there before they took her to surgery.
Mark called his parents and asked if they could watch Xavier and Jordan until he could get off work at 3pm and they refused.
They said they could handle Jordan but not Xavier.
He left work and met me on the highway to get both boys after I went to pick both of then up from school and I went on to see about my mother.

                                                                                      BUT GOD! 

After that day, Mark called his mothers friend, Ms Evelyn.
She kept children in her home and agreed to keep Xavier and Jordan.
 "Ms Ev" as she is known in our household, handled Xavier with no problems. We call her the "Childcare Extraordinaire".
Even today Xavier and Jordan still love her and Mark and I DO TOO.

From that day forward we decided we were a team " Team Trent" and that we had to focus on the people under the roof with us FIRST.
Charity would begin AT HOME...

I feel like although our marriage is not perfect, I feel it is very blessed and strong. It will never be perfect because Mark and I are human and IMPERFECT.  It is a constantly evolving and growing relationship.

Yet, We have gained some very good things from being left to our own devices.

Our family unit became very close. The four of us love hanging with each other.
Mark became very romantic and creative. 
We have had picnics in our den floor while the boys napped. Complete with blanket, basket and wine.
We have seen movies at the drive in after we have bathed and fed the boys and stored the third row seat in our SUV to make a bed for them.
We have sat on the balcony of our apartment for breakfast and danced in our bedroom to the radio instead of going out to dance.

We have learned to MAKE time out of NO time, to  HAVE time for each other.
It is not about the quantity of time, but the quality of time we spend together.

We have learned to talk , REALLY talk and he is TRULY my best friend.
Most of all we pray together and for each other, especially when we disagree.
We have still kept the promise not to let our lack of effort cause us to blame Xavier's autism if our marriage failed and I pray that we always will.

Love never fails

1 Corinthians 13:8 NKJV

 

On a different note, Ms Evelyn lost her own mother on yesterday and I would like to ask everyone to keep her in your prayers.