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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30 Responses to “Did you know? The raw truth about parent caregivers”

  1. Nancy says:

    Bravo! Not only for all your excellent, very helpful thoughts, but for what you and Joe have done to help heal and deal with all that is on your plate and in your hearts. I’m not a mom of anyone with physical disabilities, just a mom of eight, three bio, five adopted. Our kids are all gone from home now, tho parenting continues in a different way for our four still college age. We’ve dealt with some difficult/traumatic things by adopting two preadolescent girls internationally. Our youngest caused a DHS investigation thru her poor choice of words and later could easily have been removed from our home…once again from language issues and her own anger at not always getting her way and not wanting parented. I dealt with rude rejection for years, and tho it was nothing like many deal with, it was enough to make a stew that, when stirred up by emotion, no one asking us the questions, and by extended family, nearly imploded upon us. We’re still healing some relationships with our older kids, and some extended family relationships will just never be the same. I can relate to withdrawing to protect myself, and to struggling with believing in myself and remembering that it was God who led us to bring each of our kids home. We prayed each time for Him to close the door, if it was just of us and not of Him. For over a year and a half, I battled what I the effects of deep trauma and what I hesitated to call depression because it was intermittent, and I could still function. By God’s grace and the prayers of the few we could even discuss the issues with, I battle those thoughts much less frequently. So, tho I’m not familiar with physical disabilities, I can relate to some of the isolation that comes from parenting a child “differently” than the outside world believes should be done…simply because my child struggled with things she hid when she wasn’t at home. Judgement from the outside and within family is very painful, as you expressed. Our experience has made us, I pray, much more sensitive to those parenting kids with any kind of special needs, be it physical or emotional challenges. Our daughter has matured and is learning more about herself and how to give to others, including her mom! She’s a beautiful gal who has worked SO hard to hide her own challenges, that few but me actually know her real needs. Yes, she is legally an adult and not living at home…but she needs much more than our older kids did in terms of help, advice, cautions. Her older sister has had other challenges, but her personality is not so very stubborn, and she is able to laugh at her mistakes (with both girls’ issues usually related to learning and language and personality) When others believe the girls understand English as well as a native speaker does, my parenting has seemed interfering and strict. Others simply didn’t and still don’t understand we’re not parenting “typical” kids. I know physical special needs can be seen and will last a lifetime, so I’m not by any means comparing, only able to relate to some of your thoughts and try to imagine the rest. I’ve followed your blog for some time now, and am so thankful for your healing…on-going, I’m sure…and for your voice.

  2. Adam says:

    Brutally honest and all true from my experience. I really appreciate your words on making it to church; it’s nice to know we’re not alone. Thanks for opening this conversation!

  3. Amy Dasher says:

    I feel like you came to visit my home! We were very unprepared for how hard it would be to raise four children with Down syndrome (and care for our 10 typical children). Most days I feel like I barely survive.

  4. Susanna says:

    Posting this comment for Stephanie S…

    “There is another issue that I am struggling with (read: buried under). My adopted daughter is 28 years old. I am almost 70. I have been single my whole life. When I was younger, I had guardians appointed for her. Their lives have changed and they are no longer able. We have no extended family of any kind, and I cannot find a decent facility willing to take her. She has ds, seizures, dysautonomia, cardiac arrests etc. we live in Florida. I adopted her as a newborn, but no one talked to me about what happens if you are truly alone and your child develops medical complications. I cry about this every night after she goes to sleep. I’m so grateful for the love of the Lord but bothered by what appears to be, but couldn’t possibly be, His unawareness of our situation. I have so enjoyed the experience of raising her. I am not ready to place her yet, but would sure like a safety net in case anything happens to me. Please make single women aware that you need not just a plan a, but also plan b, and c.”
    Stephanie S.

  5. Susanna, such a great post. Thank you for articulating all of this. I talked with a friend just this week about how churches (and individuals) often see themselves as supportive to adoptive families simply because they are “for” adoption and advocate it from time to time. That’s a baby step in the right direction, but not nearly good enough – like saying we are “for” missions, but never actually provide any funding or other support for them. I so appreciate this article laying it all out there. Special needs families need tangible support, not just an occasional thumbs-up.

  6. Susanna says:

    Posting this for an anonymous mom…

    “Love your honest words, caregivers, especially us singles, are stressed to say the least. It is a constant battle between keeping the child happy and keeping them safe, and my daughter, at 19, wants to be happy. I am sure you understand the impossibility of their life always being happy. Day by day Jesus shows Himself able to be my comfort and guide.”

  7. Tami Swaim says:

    You crawled right inside my head with this one! Honestly it’s almost surreal!

  8. Carey says:

    I’m falling down hard and fast. My life has become a constant battle of managing behaviors. Puberty is so hard to deal with. There is a new ministry available for all of us…. A Mother’s Rest is going to help with our challenges and renew our spirit. http://www.amothersrest.org. This is what we need.

  9. Susanna says:

    Carey, it’s where my heart is! I’m hoping to write a proper introduction to A Mother’s Rest tomorrow evening after the children are in bed.

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

  11. Esther Paris says:

    I haven’t read all of it yet, because i don’t feel well and don’t have the concentration power. But i want to tell you about RIPIN, the Rhode island parent information network. It is a nonprofit, peer-to-peer, services-linked, center of knowledge, experience and support. From what i hear it is the envy of the country. Sure, rhode island is small which must make the monumental tasks for this organization a bit easier. Nevertheless, it should be a model for the whole country and not just the envy of the whole country. Look at its website in your copious free time (ha ha) – like when you have locked yourself in the bathroom with your smart phone for just 5 minutes of P & Q. RIPIN. I learned about them from my new job, and I got to visit them on Friday. They sure are amazing. People talk about them all the time in my business. Have a great day. And I will read the whole post as soon as I can. I promise!

  12. Ruth says:

    One of my current challenge is the bathroom challenge. The challenges of changing briefs in public or having bowel explosions or accidents while out and about when your child is almost 5 ft tall and weighs 75 lbs.
    We are staying home from church today because we had severe constipation are doing a clean that is not going very fast, but the fear of “what if she has an explosion” is keeping us close to home today.

  13. Jeannie says:

    Thank you for putting it all into words. I feel like such a failure, and it helps to know that I’m not alone in the struggle.

  14. Susanna says:

    Posting this anonymously for a good friend…

    “Your post is so timely and is such a blessing.

    With chronic illness and the job of raising the seven children we have, besides parenting our children in-law, I really needed to read what you wrote.

    My husband and I just took some time to debrief yesterday and I told him how hard it has been since, in 2007, the Lord Jesus seemed to clearly direct us to take in this little baby who would become our son. My body and mind and emotions are about worn out by now. He sleeps in our room, by necessity, because of his destructive behaviors and wanderings, and I am trying to figure out if we can try finding another way to have at least our bedtime be time my husband and I can at least talk alone before the day is done. I appreciate so much the candor with which you wrote of our challenges.

    In almost adopting another child with special needs a few years ago, then my heart beginning to tire and skip beats when I would care for him for 12-hour stints, our adoption worker made me feel like a ‘reject’ for my husband putting his foot down and declaring that this would be too much for us. I had attended all of his specialty appointments, had attended his foster home, done everything required, despite my physical condition and all I had to get done before / after each appointment. Our lives as a home schooling family have continued all through this since 1996.

    I’m really tired by now.

    I think my husband and I really need to implement your ideas on being able to do this for the long-term.

    What you wrote here is really what I have been feeling: “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. ”

    That is SO me.

    My husband tells me of the difference our love and care has made for our son. But I have trouble seeing it.

    I confess, I imagined a son who would love Jesus, who would blossom in our Christian home.
    Instead, our little guy likes some lesser things and gravitates towards them. He is not very interested in the Bible or in God’s things and he repeatedly (fetal alcohol syndrome?) does things he should not. Then, he can have lovely times when he is quite cute. People tell me how well he is doing but I grieve what I had hoped for and I wonder, sometimes, how I could have been led to this when my physical body is wearing out, I have very few friends and no real outlets, just giving and giving out.

    Thank you. We were praying about this yesterday, asking the Lord for His help. My husband is gone for long days, with an average of 5 hours of commuting to and from work each day. Our son is then with us until the next morning and another day begins.

    When we go to the cottage, I stay with the girls (for some weeks in the summer) and our son with special needs sleeps in the room with me. I am attentive always, an ear out for him wandering. Our house and cottage have strong locks on all of our doors that lead outside and our bedroom door has a strong inside magnetic lock to keep him from wandering at night.

    We put on the extra magnetic locks from the day our son wandered out in the night. He opened the deadbolt and flipped the secondary lock with a broom stick. He is very good at figuring out locks.

    One night, about 18 months ago, we were without Ritalin for 3 weeks (it had been lost), awaiting more to be released for him. We were within 7 hours of a new prescription being released for him when he got up in the night (the third time that night) and we slept through it as he wandered out at 2:30 in the morning. God helped us to find him but I felt like passing out as I called ‘911’. After we had found him, the police arrived (one of our daughters ran outside in her bare feet and found him about 20 houses down the road, near an opening to an old train track trail (my husband was driving the car and looking and our son had gone out by bike)), he told us that there was no real way of sending out information on finding him once he had gone missing. There is only a program like this for seniors with Alzheimer’s. Crazy. The first time this happened, five years ago, our son wandered from our house while we were preparing for his 5th birthday party (one child thought another was caring for him. He was bathed, dressed in his birthday clothes, with ‘Cookie Monster’ rain boots on, and a lady saw him outside our house and took him to another lady’s house (she ran a daycare and the lady figured he belonged there), we were frantic. My husband had been cleaning. I had been cooking and was taking a shower before our guests arrived. The police man who led my husband to the lady’s house, where our son was munching on a cookie and drinking juice, contemplated reporting us to the Children’s Protection Society (for which I had worked, as a foster mother, and from which we had adopted our son, years before). People who haven’t done this often have no idea how hard (or how wonderful, at moments), it can be, to care intensively and for a protracted time for a child (or children) with special needs and particular behaviors that are not easily curbed).

    I was speaking with my husband about what you had written today. I gave him your blog to read and we can really identify with it. Much love and thanks for encouraging the hearts of so many, passing along tips and hope.

    It would just be good for folks to know that there are others of us out there, going through this.

    God is good.

    We will finish this race well, by His grace and power and love.”

  15. Diana says:

    Yes! Yes! Yes! Feel like sobbing.

  16. Thank you Susanna! I’m VERY Interested in being connected to this! Thank you!

  17. Susanna says:

    Posting this for an anonymous mom…

    “Hello,

    I am an infrequent reader of your blog, but have followed for a few years. I am also a fellow adoptive parent. I loved your latest post about parent caregiving. We are at a difficult place where our son is reaching puberty and is quite unsafe (violent, aggressive and mean) due to a severe frontal lobe TBI. So, we are so very isolated and have very very few people willing to watch him or interact with our family. But we are trying to figure out how to give all of us (parents and sibs) a break from time to time from being around him because it is incredibly tense and stressful. I appreciate your post so much. Thanks for sharing it.”

  18. Susanna says:

    To all those of you who wrote to me after reading this post, I honor you. For every one of you who are struggling in survival mode, there are thousands more throughout the world. You are in my heart and in my prayers. Thank you for not giving up.

  19. Julie says:

    I stumbled upon Susanna’s blog via an article posted about Adam and Amy. I was so intrigued by the number of couples that so selflessly adopted special needs children and began to read the stories. I have to say that you all are such heroes in my mind. I am 58 and single and not in any position to adopt a child, but I am so thankful that so many of you have adopted these precious children and are still pursuing adoption (Adam and Amy for one). God bless you all. May our Heavenly Father grant you incredible grace and peace daily. May your children rise up and call you blessed. May you know the incredible difference you have made and are making in each of their lives. God bless you!!

  20. Sandi says:

    Thanks for articulating this so well. It validates feelings. So now the question is regarding those who feel under this burden with no way out in sight … now what does that person do?

  21. Susan says:

    Susanna, you have represented us adoptive parents for so long. Your writings over the years have uplifted me more than you will ever know, especially knowing how difficult your own path has been. This adoption thing is definitely not for the faint of heart! But sometimes we start out as exactly that – faint of heart. We just don’t know it until reality sets in. Then we need to let the Lord step in and make our hearts strong and able to withstand that which He has asked us to do. Sometimes that concept takes a long time to grab hold of.

    I have a thought to add to the discussion. It is for those parents who are getting older but find it hard to think about moving your child from your home to a new care environment. Please know that it can actually be a kindness for the child in ways that you may not realize now. I worked in health care settings for my entire career before I retired. It was heartbreaking to watch an adult child with special needs struggle because he/she was placed in our setting due to the sudden loss of a parent either through the parent’s medical need or death.

    These adults with special needs had never known a living environment other than the incredibly nurturing one of their family home. No matter how great the new environment is, it is still an uncomfortable one filled with strangers, and mom or dad are no longer available to help with the adjustment. This happened many times with adults who were 40-50 years old, and navigating a major life transition at that age is more difficult than we realize.

    It may be a kindness to make arrangements for your child earlier in his/her life, and then be involved in making their new home a good transition. It is much easier for a person in their 20’s or 30’s to make new friends, take advantage of activities and outings, and adjust to new people caring for them than it is at an older age. The frequent, loving presence of a parent assisting this new lifestyle can be so supportive and helpful. It can actually be fun in some ways. I have witnessed families that only placed their young adult child with great hesitation. And then, with the parents’ support, watched as the child made a much better and faster adjustment than the parents hoped for. Before long, when the children went home for visits, they would let their parents know when it was time for them to “go home” to their new home setting!

    Sometimes this change, made a little earlier in life, can also help the parents to maintain their physical and emotional health longer. They are now free to enjoy being with their adult child just as a parent, and not as a worn out or weakened caregiver. Everybody does better.

    I know this is a really difficult and emotionally charged subject. I struggle with it myself as I plan for my three children with special needs who are now 21, 17, and 16. I am single, retired, and in my late 60’s. I am so aware that I will need to make these decisions soon myself. But I know the Lord will help me find a good plan for each of them. And with His help I will assist them in making good life transitions with me right by their sides. I have come to truly realize that I am not the only person on earth who can adequately care for them. They have a Heavenly Father who knows every hair on their heads. I defer to Him. And then walk it out always asking for and following His guidance.

    Thank you again for writing this marvelous post, Susanna.

  22. Colleen says:

    Susanna, I have missed you and have been praying for you frequently. I have been taking a break from adoption related things while we have been working on healing… So much grief. But a friend shared this and I had to share it also because of how spot on it is. Thank you for being a voice for all of us. I have lost friends and family members… Most of whom never even took the time to talk to us about the situation but instead came to their own conclusions. It hurts. But there are others who truly care that don’t understand the depth of need that there is, and I think this will help them so much!!! I love you, dear sister… And now that we are coming out of that dark place I hope to be around more!❤

  23. Erica says:

    I’m going to read over this with my husband. We had a special needs child who never progressed past newborn stage. He was stuck in the colic stage for almost 7 years. The crying broke us down. His special needs were so easy (he needed lots of equipment just to live in our house) but his crying was just so hard. Crying and screaming. He died unexpectedly 7 months ago and now we are dealing with chronic illnesses and a preemie who is now getting therapies. I’ve just been so overwhelmed. I know this is all for God’s Glory so thank you for your post!

  24. mamaporuski says:

    We have been in and out of this cycle ourselves. The marital stress is more than we bargained for as well. We are grateful for the resources we have had and the commitment by our extended family and close friends to give us rest and relief. I think the hardest part in the beginning was realizing that many of our church friends simply did not understand nor wanted to understand our struggles. We miss the fellowship with other believers that we used to have.

  25. Susanna says:

    Colleen, I love you back. I’ve missed you! Email coming your way…

  26. Susanna says:

    Sandi, good question! Working on addressing that…

  27. Susanna says:

    Susan, what wonderfully valuable perspective and advice. Thank you SO much. This one should have a wider reading, so I plan to post it on its own at some point.

  28. KMT says:

    Yes, you hit the nail on the head with this one. I want to add something that I’m dealing with that frustrates me to no end. So many people want to help – by taking my girls to fun places, like Star*bks, and out to lunch, to a movie, making cookies at their house. And they think this is helping me. This isn’t helping me because it’s exposing my girls to things they don’t handle well and giving them a false sense of their capabilities and then they wonder why I don’t let them do these things or take them to fun places all the time or praise them like they’ve just won the Nobel Prize and why I make them do hard things like school work and chores.

    Help needs to truly help. Taking my girls out to have fun all the time and leaving all the not fun stuff for me to deal with is going to turn them against me. Been there, done that.

    Bringing us a meal will help.
    Opening envelopes to the never-ending beast of mail will help.
    Coming to our home and helping with OUR ROUTINE will help.
    Disrupting out routine will NOT help.
    Over-praising my girls will NOT help.
    Supporting me when my girls act up and out WILL help.
    Just because we look good doesn’t mean we are good.
    My girls DO NOT need treats all the time!!!!!!! They aren’t puppies.
    Confusing my girls with big words and jokes will not help.
    Tutoring them (after I train you) will help!

    Yep, Sundays aren’t a day of rest for us moms if we try at get to church. We’ve gone back 3 or 4 times now after over a year off.

    I’m ill right now and it’s the middle of the night so my thoughts aren’t well-organized, but I agree with everything you wrote. I’m behind ALL THE TIME, especially on paperwork. It’s impossible for me to do it all all by myself. Impossible!

    And if anyone offers us another chocolate cake I’m going become violent because I’ve said it a thousand and ten times – I do not like chocolate cake and my kids definitely don’t need chocolate cake. Bring us a bag of apples or a casserole or a pot of soup. Anything but junk! We have health issues to consider in this household!

    Heck, come mow our lawn for us, or, better yet, pull weeds. Please, help us sand and seal our play structure before it succumbs completely to the sun.

    Come with us to appointments so I can be in the room with the patient and have eyes on the others.

    Please remember my kids are nearly adults at 18 and 16, and that we are striving for appropriate behavior – especially in public – no matter how petite they are and young they look.

    If I say no, don’t say, “Ah, it’s okay.”

    I wish my brain worked better tonight because there’s so much to say and I want to say it right and don’t feel that I am. I’ll re-read your post again when I’m feeling better and see if something else occurs to me.

  29. KMT says:

    I realize I should be started my last comment with this: I’m one of the ones not getting enough support.

    I’m behind on everything having anything to do with paperwork.

    Getting through each day is a miracle. I’m moving without stopping from the moment I wake to the moment I pass out at the end of each day.

    My health is starting to suffer.

    If only the “professional” agencies would do their jobs properly, such as SSI, the school district, regional center, our medical professionals, etc…, life would be sooooo much easier, but I’m constantly fighting with these organizations to get the basics my kids need just to survive. I’m about to hire attorneys because I can’t do it any more. The fighting isn’t getting me anywhere and deadlines keep coming and going from these agencies who think I can jump through their hoops for four kids and still sleep, cook, and use the bathroom, oh, and breathe.

  30. KMT says:

    To Ruth:

    As I read your comment tonight, I had a thought that might help – if the briefs are the pull on type and not the diaper type, and, if your child can stand up. I’m going to take my own advice for my child, too. I can’t imagine why I didn’t think of this before.

    How about putting two pairs of briefs on your child before going out. Then, the dirty one can be removed and the clean one pulled up without having to deal with shoes and pants.

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