Family Respite

On Sunday July 29, I was up late reading various answers on Quora, when the question "Do you ever regret adopting your child?" came across my screen.

I decided to tell our story, I don't know that it was so much an answer to the question as it was trying to explain the complexities of regret to myself. It was painful to write, but also a relief to see the words finally spilled out and real.

What followed was a truly humbling outpouring of support and inspiration from so many people. There is no way for me to ever express the relief and gratitude that I felt from everyone offering prayers, support and well wishes for our family. I was just overwhelmed with the beauty of it.

Many suggested that I create a GoFundMe. I hesitated, I really hadn't written my answer for any reason other than to share our story. This feels a bit awkward, and honestly surreal. Then my grandson's therapist pointed out, this is just people trying to do a beautiful thing and pay it forward. 

So, I have started this, in the hopes that we can take our Grandson and ourselves somewhere that we can find some fun and respite if only for a little while.  Kids deserve to have some fun in their lives, and so much of his life is spent in places where we can keep him safe or in therapy learning new skills. We would love to take him to see something other than the inside of a clinic or the walls of the house. For us, we would love to just have a few days of peace, quiet and sleep.  

I would also like to ask anyone who offered us respite time, while I know you cannot come and offer us respite personally, please please consider doing it for another family like ours. Since our adoption was finalized we have been able to obtain a small amount of care for our grandson, however the shortage of providers is in a critical state. There simply aren't enough people to fill the positions.

Finally, here is the answer from Quora
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Anonymous

Answered Sun
 
 
Yes.

We adopted our grandchild. It makes for interesting family dynamics.
Our oldest daughter, his mother, has serious mental health issues that don’t allow her the ability to raise a child. She isn’t a bad person so much as just a very broken person with no ability to help herself or be helped by others.

From the moment we learned of her pregnancy, we knew that we might very well end up raising our grandson. What we didn’t expect was having to sacrifice the rest of our lives to do it.

I am young for a grandmother. I was just over 40 when my grandson was born. My youngest child was a little under 12.

I had a plan. I always wanted a family, but I also always wanted to be able to enjoy a relatively kid free life while I was still young enough to enjoy it fully. I didn’t want to be having that constant battle between career, family, kids. So I chose to have my kids early, and then I stayed at home and raised them in my younger adult years, thinking the entire time, that once my youngest was about 11–12, I would do the things I needed to do to still have some career and personal success. I wasn’t going to be a millionaire, but I would still have time to make a comfortable success of it, and be set up for retirement later.

The gods laugh at those who make plans.

When our grandson was just a few weeks old, our daughter asked us to babysit. She didn’t return for several days. This pattern repeated for several weeks, until he was 3 months old, at which point she just stopped asking and moved right into the leaving part. The state got involved shortly thereafter.

Getting the state involved protected our grandson, protected us, but most importantly would allow his Mom to get some therapy, get on the right track and be able to raise her son. With the state involvement, it meant she could get all the help she needed at little or no cost, since it helps keep a family intact. Sadly, she never took advantage of the opportunity. From the start she refused to co-operate. She viewed the caseworkers, the mental health professionals, and most especially her parents as the enemy.

When our grandson was just under a year old, the caseworker ordered a developmental assessment. This is standard procedure and nothing we were alarmed about. We had noticed some odd things, but nothing we were fretting over…yet. Our grandson wasn’t a particularly “bubbly” baby. He was slow to smile and seemed more interested in the carpet than in people. It took him a bit longer to crawl, and he could watch videos for hours, ignoring his toys entirely. As a parent of my own kids, I suspected he had issues. I thought possibly fetal alcohol or drug exposure. Mostly I figured he just found teletubbies utterly fascinating, and people not so much.

At 9 mos he was diagnosed with a developmental delay.
At 14 months a speech delay. 
At 22 months, severe autism and a developmental delay of <50%. 
At 23 months, I realized, the rest of my life was going to be about this child.

Yes, I know most parents live for their kids. But I don’t mean live for your kids, but still get to have a girls night out. I mean, live for this child. That’s it. Nothing else. Every single day.

At first I tried to just stick with my original life plan, with some adjustments. I tried working from home. I was lucky enough to work in an industry where it was available to me. The work was available. The ability to actually WORK, not so much. On top of all the stuff you normally do for a kiddo, 3 squares a day, snacks, play, etc. Our grandson required therapy several times a week, court ordered visits with his Mom, that required me to wait in a room for several hours, multiple court appearances, home studies, reviews, on and on and on. Then there was the fact that you could not leave him alone, ever. Someone had to have eyes on this child every moment of every day. I got over my aversion to peeing with the door open. I learned to shower very early in the mornings, or very late at night.

Because we were in a strange state of limbo, being grandparents, but not parents, there were almost NO resources available to us. No respite care, no SSI (the state took that as a “reimbursement” for his care), no therapy for him or us. No trained caregivers to ease the load.

Because his Mom wasn’t showing up for supervised visits, she never had a visit that was unsupervised. With no unsupervised visits, that meant her son never spent a night, or even an afternoon in her care after the age of 6 months.

The adoption took 5 years.

We hit the poverty line pretty fast. We live even now, paycheck to paycheck, literally. Half the reason I am still up writing this, is the stress over how we are going to put gas in the car to get him to therapy sessions this coming week.

For families like ours the world gets very very small, very very fast. Public outings are never stress free. They aren’t even low stress, it is high alert from the moment the front door opens, until the moment we return and it closes behind us.

Once we are home, we live in a virtual prison. I have locks on locks on locks. Locks to keep him out of a kitchen that is dangerous for someone who likes to play with the numbers and timers on the stove. Locks on every room that he isn’t allowed access to, including the laundry room. Locks on every window so he cannot escape to the street through a window. Nothing in our home is easy or comfortable or relaxed. It is, for lack of a better phrase, “a pain in the ass” to live in my home.

Then there are the endless meetings, therapists, and related miscellany. If I am not dealing with his autism directly, I am dealing with it indirectly through a doctor, therapist, teacher, other paraprofessional. When I am not doing any of those things I am trying desperately to keep the rest of the house in clean socks and decent dinners.

Autism is now my full time job.

My children spent their teenage years being given less because of how much more our grandson needed. While they never went without, and certainly didn’t have it rough, it wasn’t the childhood I had imagined for them.

After a while we all stopped having friends over, because it just becomes too exhausting explaining all the things to all the people.

Autism is a horribly isolating thing for the entire family.

My husband is in his 50s. He works a dead end job, in a corporate soul killing place, because we cannot risk his trying to find something new at his age, and we cannot risk losing his paycheck for even a day. He works all the overtime he can get, to help ease the crush of debt coming for us.

I know that by the time our grandson is old enough to live in an assisted group facility, or with another family member, I will be too old to have done any of the things with my later adulthood that I wanted. Hell, I won’t have even done any of the things I needed to. I often wake up at night wondering what will happen to us when we are too old to work at all. We cannot save for retirement. We cannot even save for a vacation. To be perfectly blunt, we can’t save for a date night.

None of this was the plan.

Don’t get me wrong, I love this child beyond words. The decision made, would be the same no matter what. Besides, there really wasn’t a decision to be made. This is family, and you can’t really walk away from that so easily. We couldn’t choose to not love this child. We couldn’t choose to not do what we saw as the right thing.

I spend lots of time wishing I could just once sit in my house, and revel in the ease and quiet of it. Just one day to live like normal, ordinary grandparents. Spoil them rotten and send them home. Then lunch with the girls or work for a client.

But more often than I like to admit, I feel like my life, my future, and my well being have been stolen. Not by my grandson, but by his mother.

She left us with no choices. While we set her free to make hopefully better ones.

So, do I regret the adoption? Yes. But not nearly as much as I would regret not doing it.

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