Did you know? The raw truth about parent caregivers

March 18th, 2017

Before I introduce a new ministry I am passionate about from the depths of my soul, it would be appropriate to first shed the honest light of day on some of the reasons this ministry is so needed.

Hang with me, folks! This is a super long one!

 

Why do some disability-affected families thrive, and others struggle along and even fall apart in one way or another?

 

All other things being equal (such as the parents’ level of commitment to each other and their children, their positive approach and sense of humor, willingness to sacrifice and capacity to be flexible, etc.), I believe that one of the most powerful factors to impact whether a family affected by disability will sink or swim is whether the level of support we’re receiving is equal to our level of need.

Although our family experienced some challenging times before and after having Tommy in our family, that was the only time in my life I wondered how long we could survive that inhuman level of ongoing pressure coming at us from every direction at once. Now I have very sensitive radar for individuals and families who love their disabled family member with all their hearts but may find themselves in stressful caregiver situations without a sufficient amount of help and support.  

 

The list below of challenges common to special needs families is not exhaustive.  It’s just what came to mind from knowing many people who are living the parent-caregiver lifestyle without sufficient help and from having lived it ourselves.  There’s “normal busy,” the normal complications of life that everyone faces…

 

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…and then there’s all that PLUS the relentlessly demanding, non-optional caregiver responsibilities.  They are not the same thing.  We’ve lived both.  So have some of you.  That’s what I’m going to describe candidly in this post.

 

The biggest shock to a family when adding a child with a life-altering permanent disability to the mix can be the time commitment required. Suddenly, the minimal basics of parent-caregiver life, feedings, meds, baths, diapering and clothing changes, emotional/behavioral needs, appointments, and the bare essentials of cleaning, laundry and meal preparation are taking up every waking moment and the rest of life begins to pile up and loom impossibly over one’s head.  There isn’t sufficient time to organize a system to make everything work more smoothly.  Not even enough time to reach out for appropriate help.

And the paperwork!  During the most stressful times, it can take at least a full day each week to accomplish all the disability-related deskwork–paperwork, emails, phone calls (must fit into normal business hours), communicating with doctors, therapists, teachers, insurance companies, researching, filing, planning, scheduling, etc.

We often end up using sleeping time to address the necessities there was no time for while our children were awake. Serious, long-term sleep deprivation is too often a part of the caregiver lifestyle. With this comes body and brain exhaustion, which can make it difficult to focus and keep up with the high demands of our lives.  Chronic sleep deprivation can also compromise our immune systems and increase our risk of illness.

Less available time often means spending more money to make life work.  Thrift often requires time. Paper plates and laundromats come to mind immediately, but there are countless other examples.  It takes time to make everything from scratch and shop around for the best deals.

Less available time can mean that there is less time to deal with repairs while at the same time there can be an increased wear and tear on the house, appliances, vehicles, furniture, and other possessions.  In a special needs household, there is often a lack of extra funds to address repairs and replacements as well.  We can begin to feel like things are falling apart around us when things are…uh…falling apart around us!

Our mobility can be very hampered due to the physical needs and/or behavioral issues of our children with disabilities.  It can take an enormous amount of time and effort to get out of the house, but we often have far more appointments to deal with than the average family.  We can find ourselves reluctant to plan for, pack for and navigate public outings when we don’t have to, but staying home can contribute to feelings of parental failure/guilt and isolation.

For many parent caregivers, Sundays, which might have formerly been a time to rest, recharge and connect with others, can end up accomplishing the polar opposite.  Going to church on Sunday can exhaust us further at the end of a draining week and leave us feeling more disconnected due to spending the time caring for the needs of our disabled child in an inconvenient location.  There are churches with ministries for families like ours, but they’re few and far between.  So many parent caregivers I’ve known, including myself, forced to choose between church and rest, have gone for long stretches of time unable to get to church on Sundays.  Many special needs families no longer attend church at all.  If only church didn’t start until after lunch!  Waking at 4 am to be ready to leave for church with the family?  Just not going to happen.

Children with special needs can be more vulnerable to frequent illness, which is one more contributor to caregiver isolation.

We might hear others outside the special-needs universe talking about being crazy busy or in survival mode because of a minor, temporary, or even optional situation and feel even more disconnected with them.  We’re living in this alternate reality for life!

Many of us have experienced the loss of friends after entering the caregiver lifestyle.  This often happens through attrition.  It takes time to nurture friendships, but it has become impossible for us to put the time into all our relationships that we formerly did.  Even those who are understanding and don’t take it personally can fail to realize how much we need them to get creative and find ways to keep investing in our friendship.  Some friendships are permanently damaged by misunderstandings such as taking our busyness as a lack of caring or pointed rejection of them.  This loss at a vulnerable time can trigger grieving.

Since genuine connection with empathetic people can recharge our positive emotions and is therefore crucial to the emotional well-being of most women, this very common caregiver isolation can contribute to feelings of loneliness, sadness and even depression.

If we’re living through an extended crisis, we often fear that others will grow tired of helping us.  Sometimes that fear is justified.

We have less time and mental energy and focus than we formerly had to give to our other children‘s one on one time, supervision, education, character and skill development.  Experiencing this, feeling helpless to adequately address it, and witnessing its fallout can be very difficult to process emotionally.

We might be gone from home much more frequently for appointments and for long stretches of time for hospitalizations.  We may be surprised to experience grieving at the additional separation from our families.

A parent caregiver can also experience unexpected grieving when the family we used to be has vanished, we haven’t yet embraced who we have become, and a positive future seems permanently out of reach.  Maybe we used to have people over all the time or go on frequent fun outings or provide meals or other practical help to families in crisis or catch up on sleep once a week–or all these things and more–and can no longer swing it.

We can also grieve the loss of ideals that had to be sacrificed in order to survive, for instance, ideals in the areas of diet, education, organization, exercise, quality time with each child, and others.

Maybe we are running ourselves into the ground to do our best for each member of our family, but our best effort never seems to be enough to meet the need.  Our failures are always staring us in the face, and they can really start to pile up higher than a pile of dirty dishes in the sink or that ever-present Mount Laundry!

If we are typically a positive and enthusiastic person with a sense of humor, the wave of negative emotions can come as a very unwelcome surprise, contributing further to feelings of failure.

Our other children may need to process their own negative feelings about the changes in the family.

If both parents aren’t fully invested and committed to the disabled family member and to helping one another share the responsibilities, there may be tension between husband and wife that is only magnified and intensified by the constant pressure of life.  There’s a reason many marriages don’t survive adding in a child with disabilities, especially with more involved needs and/or behavioral challenges.

The pace of the parent caregiver lifestyle when there is insufficient support can be so extremely demanding that time to address our own pressing needs seems like a luxury that may stay permanently out of reach.

If a survival-mode crisis stretches on far longer than expected, it’s easy to begin to feel trapped in a situation that is not working.  Even if we are determined to remain positive and make the best of it, the stress will exact its toll on us.

 

Special needs adoptive parents often carry additional unique pressures.  Having chosen this life doesn’t make us immune to its difficulties; it can add to them. 

 

“The death rate among those pious churchmen who ministered to the sick was high; many of those who did not perform works of mercy were spared.”
~Quote from the back of “Serving in the Shadow of Death,” a children’s reader about the bubonic plague in the Middle Ages

 

I have come to believe that purposely taking on a caregiver lifestyle via special needs adoption can set parents up to be less likely to seek out appropriate help.

If we end up with overwhelming challenges after bringing our child home, we can easily feel like failures and question whether we somehow misheard God.

We are especially vulnerable to the easy judgments of others about our fitness as adoptive parents, and we know it.  We often feel scrutinized and evaluated by others.  We may feel we have to prove we can handle what we said we could handle. We can easily begin to think that needing outside help means we’re failing at our jobs–just not up to the challenge.

We might go silent, thinking there’s nobody we can talk with honestly about the struggles we face, let alone asking for help.  “If I’m honest about what my life is like, I’ll just sound like I’m complaining even though I’m not,”  “If I’m open about my challenging Child A, they’ll think I must love easy Child B more.”  “I’m afraid they’ll just think we made a big mistake.”  Or maybe they’ll say, ‘Well, what did you expect?  You asked for this.'”  

We can feel pressure to be a poster family for special needs adoption or conversely, fear that others will think poorly of special needs adoption if we’re honest about the challenges.  We can experience pressure to portray only the happy and “successful” side of special needs adoption.  After all, so many needy children are still waiting for families and we don’t want to scare potential adoptive families off, do we?

As a result of internet infighting, some of us may come to feel like we can’t trust anyone, even other special needs adoptive parents.

Unfortunately, it’s all too common to see parent caregivers give in to resentment–of their spouses, of outside detractors, of those who seem to have it easier, of those who could be helping but aren’t, of those who aren’t “doing their part to adopt,” even resentment of their own children–which hardens their hearts and closes them up to opportunities for personal growth.  Pulling back from relationships with other people as a result of our fears or resentments puts us at even greater risk for isolation and depression.

Our severe shortage of time can make us feel like we aren’t able to spend as much time nurturing our child as we had envisioned doing.

If our adopted child doesn’t attach with us or is prone to negative emotions and/or difficult behaviors, we are bearing all the weight of this problem list without seeing how our effort is making a significant difference to our child’s emotional well-being.  This will sound shocking to all but those who have been there, but I have known families whose child was content in the orphanage and struggled so much once home that the parents have honestly questioned whether they did the right thing to rock the child’s whole world.  Our child’s struggles contribute further to feelings of failure.  “Maybe I just don’t love them enough, or they would be happier and making more progress.” 

Now take all the struggles on the above list except the marriage one.  Pile them all onto one single mom.  And wonder how that mom is still standing up with her eyes open, let alone able to smile!

“I too am not able to be the mom I always thought I would be. I feel very utilitarian. It’s been so many years of juggling and administrating that it has changed me in ways that I do not think are reversible. Not that that’s bad. It’s just not what I envisioned in terms of my chance to nurture and emotionally support them with lavish time and attention. Only so many hours in a day.”
~Anonymous quote from an anonymous single special needs adoptive mom

 

Ultimately, any of the struggles on this list can hinder special needs parents from saying yes to the practical and moral support that will help us to embrace this life we have been given, serve our families with grace and gusto, and become a family who is strong and thriving in the long run.

 

But that’s not the end of the story!

 

Parents who are caring for children with disabilities are the front lines of protection for our children.  Whether or not we are adoptive parents, by staying put (as opposed to running away from home, driving off a cliff, going postal or taking to drink!), we are choosing to be our children’s first line of defense.  By choosing to stand in this place, we take on the weight of our children’s extra needs and limitations in order to give them the best life we can.  We accept the risk of pain and loss in order to work for their best interests.  Because we love them, we are consciously committed to caring for our children for life, even if that means permanently putting ours on hold.  Because we share in our children’s vulnerabilities, our families can sometimes be fragile ecosystems operating under intense pressure.  We will almost surely need some level of outside support from time to time if we are going to be effective primary nurturers of the most needy and vulnerable children, these precious gifts from God we love so very much.

Our children can’t take a break from their disabilities.  But we will be far better parent caregivers if we take opportunities to rest, connect with caring people, and recharge physically, emotionally, relationally, and spiritually.

 

 

How can we help lift some of the weight off of special needs families until the needed adjustments have been made and longer-term supports are firmly in place? 

I can hardly wait to tell you!  Next post coming soon, titled, “What can I give Him?  Part Three: A Mother’s Rest.”

 

P.S. If you, dear reader, are a special needs parent, please add to my list in the comments and share this post with others who can weigh in.  What did I miss?  I will keep you anonymous if you let me know you prefer that.  Then read the following article:  9 Things Special Needs Parents Feel Guilty About (And How To Stop)   Highly recommended: Peter Rosenberger’s inexpensive and invaluable book, Hope for the Caregiver, solid, straight-talking common sense to help us be the healthy caregivers our loved ones need us to be!

P.P.S.  We have personally learned all these lessons the hard way and are now fully aware of what it means to be in this for the long haul.  I cannot burn out within a year or two.  Among other changes for the better, I no longer try to be supermom.  I’m making my peace with imperfection and am quick to let go of unrealistic expectations.  If someone offers to take something off my plate, I say thank you and accept the help.  I’m learning to put my heat shield in place before dealing with difficult people. If I feel stress, Joe and I go on red alert until we have dealt with the cause. There are now built-in physical and emotional boundaries around my life, I connect regularly with friends, and there are regular breaks and rest times set aside for me that strengthen me to be fully present with my family when I’m with them and to serve them joyfully.

This is in spite of being the mom of a household of sixteen people who over the past five months have navigated a knee injury, four surgeries, two hospital stays, in-home nursing care, a broken leg, eight rounds of antibiotics for ear infections and strep/scarlet fever, one month-long regimen of IV antibiotics at home for a skin staph infection, at least four dozen outpatient therapy appointments in addition to our typical life of homeschooling seven of the children, the six to eight daily laundry loads, the routine doctor, dental, specialist, haircut and birthday photo appointments, birthday celebrations, weekly date night, reading night/Mom’s night off and family night, having the church here once a month, meeting up with some close friends, and plenty of other fun and outlets for creativity both at home and away, all while completing the massive household reorganization necessitated by adding Josie to our family and space to our home.  That doesn’t list all the weak areas, like lack of exercise until the weather turns warm, but hey, we’ll get there!

My family needs a peaceful, happy mom who accomplishes less but obviously loves to be with them more than they need all the best programs…or a stressed-out supermom wannabe who tries to get everything perfect.

 

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More about Joel

February 26th, 2017

Question from a faithful blog reader:

The situation is probably more complex than I know, but can you help me understand (knowing you may be limited)? Why can’t Joel’s foster family keep him? Wouldn’t that be good for him to stay with people who already know and love him and speak the language he knows?

Answer from Joel’s foster mom in China:

When a child turns fourteen years old in China, he or she is no longer able to be adopted. At all. Since Joel cannot care for himself, he will be a ward of the government and likely go into a government institution. We have ASKED if we can continue to foster him after the age of fourteen years [his fourteenth birthday is early in January 2018], and his director has not yet given us permission or wanting to even talk about it.

The problem with long term care for him here without him being adopted is he cannot travel for medical care or help. This is the problem we had with [another foster son]; we couldn’t get him a visa out of the country to get him medical care. Joel’s seizures need attention and help that he cannot get here. He also needs a school that can help him. He has never gotten the help here that he has needed. We give him love and what we can, but it’s nowhere near what he needs.

Also, we are required to go stateside every couple of years, and there is NO place for him to stay when we do this. If and when we moved to the States or to another country, he would again be stranded here in an government institution.

This is between you and me, [description of how Joel was treated at the orphanage]. There is another boy, five years old, here at this orphanage with the same autism and seizures as Joel, and they just sent him to a crazy hospital where he is now locked up 24/7. We had been trying for years to foster him as well, fearing that this would be his fate. A few months ago they sent him away, and we haven’t even been able to visit him since.

Joel understands English and Chinese. He is smart; the way he looks at books, I think he can read both [languages] as well. It appears he can read a clock. He is STILL not toilet trained, although the last two days he used a toilet which is HUGE progress.

My mom visited and met him in the month of December, and she said this yesterday about him,

‘The thing that made me fall in love with Joel was watching him interact with the three babies you have in the home. When they were on his favorite rug, he would tiptoe around the rug and go look out the window, or sit on his favorite couch and wait until they moved, and was always very gentle and loving towards them, never even accidentally hurting or tripping over them.’

He squeals and moans–both happy and frustrated–but is non-verbal.
He does a couple basic signs, one for ‘all done’ and another for ‘eat.”
He feeds himself.
He is left handed.
He sleeps in a regular bed and LOVES to have his own bed after years of a portacrib. He sleeps on his back with his hands behind his head and the blankets pulled over his face—very cute.
He loves texture and rubbing heads and giving kisses.
He loves to stim by flipping books. His one naughty thing he does is steal a book that isn’t one of his to flip. He has favorites but usually always exercises self control with those forbidden favorites. He loves to eat and will sometimes steal unattended food or drinks as well (coffee is a favorite! he is not allowed).

He can put his own shoes on and off and wash his hands with prompting. He will pull up his pants when they start to fall down if we tell him to.
He hates changes.
He can open doors but usually doesn’t, which is very nice, because I don’t worry about him going outside or even out of his bedroom if the door is latched.”

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His name is Joel

February 16th, 2017

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Meet Joel!!

Joel turned 13 last month, so he has less than a year to be adopted.  He is non-verbal, autistic and has epilepsy.

Joel has been with a wonderful, loving foster family in China for years, so there is a lot of information available about him.  This family worked hard to get the orphanage to put together a file for him and are ecstatic that it has finally happened!

So here’s my challenge to you!  Please print out this photo of Joel!  Hang it on your refrigerator or somewhere else that you’ll see his handsome, smiling face every day and be reminded to pray that God would send him a loving family.  We’ll be praying right along with you.

And share this post with the hope and prayer that his daddy and mommy will see him and know he’s meant to be their son.  His life is worth it!  

Thank you, friends!