“Now I’m a single mom who feels emotionally and financially tapped out raising a kid with a rare medical condition. Adding to the stress, my child has ADHD and ODD, which can’t be solved with a pill…”
This quote is from the below posting (check it out)
where a mom bares her heart. It’s not easy to be this transparent with our struggles, so I really wanted to encourage her. I’ve personally felt such tremendous isolation so many times in the process of trying to raise a special needs child and that’s while having an intact marriage and supportive husband backing and shoring me up along the way. Either way I can’t imagine enduring such a challenging journey alone and how incredibly painful and overwhelming that process likely is.
The scripture image above comes from this site:
I hope (and pray) that the Lord is making Himself tangibly available to her and that she (& all of us bearing the burden of Special Needs Parenting) are experiencing that “Peace that passes understanding” and the “comfort in [our] suffering” that only the Lord provides.
Thanks for being so real here. May God give you Grace & Strength…and glimmers of Hope when you most need them. I don’t know if parents without special needs kids will ever really “get” what all of us in the (typically un-chosen by us but Chosen by God) club of Special Needs Parenting have learned, what pretty much goes without saying. There aren’t really enough words to come close to articulating the loss, despair, terror, anger, confusion, frustration, triumphs, hopes, dreams, persevereance, faith, and even Joy in the Midst of Sorrow that seem ubiquitous to our experience.
I have many times found comfort, encouragement, and inspiration in the writings and stories of other special needs families…here’s one place where I have personally found such special sustenance again & again…
Please Hang in There–You are NOT Alone! Blessinegs, Valerie Curren
I just realized the date you originally posted this, 9/11–the 15th Anniversary of that tragic turning point of a day. Not everyone outside of NYC has forgotten (some of us Never will!)…my special son in particular is very mindful of the tragedy of that brutal assault of a day. We continue to Remember, Reflect, and Revisit those events so that we can honor the memories of the lost, exalt (and hope to emulate) the heroism of the brave, and continue to pray for Comfort, Peace, and Closure (if that’s even possible) for the bitter, bereaved, and broken…in Christ, Valerie Curren
“Watching your child doubt is painful, and it tests parental faith. Our first inclination might be to panic, but the best option is to pray, wait, trust, and walk alongside our children.”
How timely the email inbox can be. I’ve been “avoiding” wading through the myriad communications in my email inbox as this process can take strength that is not readily accessible (and the bulk of these missives are “impersonal” and therefore on no real timetable). Lately what strength I can muster has in large part been dedicated to helping my special son, Josiah, wrestle with his own crisis of faith…and reading the article above has now inspired this writing…
It started some time back with a seemingly random conversation with Josiah’s Respite Care Worker that Josiah overheard. This Worker is a Muslim that has claimed to have been raised by both Muslims and Christians…he said one of his grandmothers was a “Christian Evangelist”. Anyway the Worker and I were discussing the changing of faith of his father and stepmother, in that he claimed that both were “raised as Christians” but later converted to Islam…I had questioned whether or not either of these relatives had truly been “Christian” at all if they could alter their viewpoint of Jesus so much that He would go (in their minds) from Lord & Savior to just a “good man” and a “prophet”…
Anyway, overhearing this conversation seemed to start a spiral in Josiah’s heart/mind that if his Worker’s relations could abandon Jesus he too could be at risk of loosing his Faith…
My husband and I have each spent hours in counseling and prayer with our son as we attempt (with the Lord’s help) to assist him in navigating these treacherous waters. It’s truly wondrous to see the depths of despair that assail our son as he wrestles with his sorrow and shame at even the possibility of ever turning away from Our Lord. His pure heart has been laid bare in conversation and prayer and his unveiled desire for a deeper rekindling of his zeal for the Lord is remarkable in someone so young! (or anyone, for that matter!)
So we’ve been encouraging him in Scripture memorization and meditation, prayer, worship, and in carrying out the edicts of scripture…like taking “into captivity every thought to the obedience of Christ” (from BibleGateway.com)
2 Corinthians 10:5 King James Version (KJV)
Now we continue to encourage Josiah to work on this process of “taking into captivity” his thoughts that seem to want to stray into the arena of his fears. As a person on the Autism Spectrum with tendencies toward “perseveration” (getting stuck on a topic) and with a known history of Anxiety and Depression and even OCD this situation has seemed to have created a bit of a Perfect Storm which our son must learn to weather and still Trust God, not allowing his anxieties to overwhelm and overshadow his knowledge of Truth, nor his relationship with the Lord…
Although it is difficult to see how he struggles and the pain this brings him, it is also glorious to see the Kingdom Work being done in his heart. It is a privilege as a Christian parent to be able to share in the spiritual journey with our children and to find how our own historical struggles and wounds have uniquely prepared us to minister to them during these times of upheaval in our loved one’s lives. We truly believe that this “crisis of faith” is actually part of his spiritual “manhood training” whereby he learns how to go beyond the milk of the Word and how to feed himself spiritual meat.
We’re also trying to help him internalize how we live by faith and Not emotions…in fact, I don’t know of one place in scripture where the Lord instructs us to consult our feelings and based on them decide what truth/reality is! We’re assisting our son to lay that firm foundation on the Rock that is Christ Jesus, that is based on Scriptural Truth, and which can provide a safe harbor in Any Storm, because it is never dependent upon our fleeting emotions aligning with it to validate it as immutable Truth.
So unlike the article above’s trajectory, we are Not dealing with someone who doubts their faith, but rather someone who is incredibly broken by even the possibility that at any time he could become so deceived that he would be tempted to turn his back on the Lover of his Soul. Hearing his heart cry out in prayer, expressing his hunger and thirst for God, and the articulate way (completely different that his human interactions) he communicates with the Lord has been such a sorrowful joy for my own soul too. In the Kingdom of God my son has No Disability! Perhaps, in some aspect of God’s plan, He sent us a “broken” (in this world’s eyes) child that we could see how in the arms of a loving God there is no (spiritual) brokenness in him! In fact, hearing him pour out his aching heart to our Heavenly Father really serves to highlight how “disabled” is my own spiritual fervor in comparison!
What if in God’s Kingdom we seemingly “normal” people are the ones who are truly disabled and our “challenging children” are sent to help us not only to grow in grace and strength in the Lord, but to set an example of how we should live with “childlike” faith?
Peace & Joy, in Our Lord Jesus Christ,
Valerie
And in my current CD mix, as I’m “polishing” this up comes John Elefante’s “Pass the Flame” song, which always speaks to me, especially about Josiah. The lyrics below from
Three a.m. – a baby boy; a new life began
I held him in my arms and
knew one day he’d be a man
And soon I’d have to tell
him that this world is not our home
We must give our lives to Jesus;
we are not our own
But for now just let me hold you,
a little while
Let me adore you while you sleep
Thank You, Lord, for such an angel
Make him Yours to keep
And then I whispered in his ear
There is something you must hear
Chorus:
Any way the wind blows
Don’t you think that God knows
We must pass the flame
We must pass the flame
We are the light in a darkened world
We are the fire on the arrow
We must pass the flame
We must pass the flame
She was a portrait of innocence
I took her by the hand
For better or for worse we vowed
that with Jesus we’d stand
We would instill upon our children
that this world is not our home
We would tell them that our
treasure is the promise that we own
But for now just
let me hold you a little while
Let me adore you while you sleep
Thank You, Lord, for such an angel
Make them Yours to keep
So let me whisper in your ear
There is something you must hear
Chorus
And Lord, help us teach Your children well
And turn embers in to fire
Make Your love their soul desire
The doctors came into the room;
the news was not too good I said,
“Daddy, if I could take your place,
you know that I would.”
He said, “Son, please don’t worry
go and be there for your wife
You know we’ll be together in
an everlasting life.”
Then I said, “Dad, I want to hold
you a little while
Let me adore you while you sleep.”
Thank You, Lord, for such an angel
Take him home to keep
And then he whispered in my ear
There is something you must hear
Chorus
Chorus
Songwriters
DINO ELEFANTE, JOHN ELEFANTE, GEORGE MARINELLI JR, GEORGE MARINELLI
I just read the post at the below site about the challenges one family faced surrounding church attendance…that seemed to be generated, in particular, by one church staff person being inflexible and unaccepting of their child’s unique quirkiness…
http://supportforspecialneeds.com/2016/02/10/when-church-special-needs-do-no-mix/“…we were so tired of fighting for the kids that our hearts weren’t in it to fight for this place; a place we should feel welcome no matter what. It’s exhausting fighting educationally, medically, mentally and socially and top that …We just couldn’t fight to stay in church. It shouldn’t have been, nor should it be that hard. As their parent, I take full responsibility for giving up that fight. I just couldn’t do it.”
I agree with the exhaustion statement above . Families facing complex special needs scenarios can be overwhelmed and even burned out because of the day-in and day-out battles they face on multiple fronts. Church should (theoretically) be a place where we can go and be accepted “warts and all” and where our children can be especially embraced in spite of, or even because of, their differences.
But, oftentimes church can be a battleground. There are a couple of posts at SpecialNeedsParenting.net that outline a pretty ideal scenario of love and acceptance of a very unique autistic young man in a church. Please see this story at these two links: http://specialneedsparenting.net/autism-church/ http://specialneedsparenting.net/autism-church-its-a-good-thing-part-ii/
Our family’s experience has been a bit more uneven than this. When our son with special needs was born we lived in Northern Michigan, about 3 1/2 hours North of the birth hospital. At that time I was staying with my parents in Metro Detroit with our just 2 year old son after having seen a high risk pregnancy doctor and being told of my twin pregnancy “we’ve got to get the little guy out before he dies” on a Friday, and being scheduled for a premature delivery on the Monday following. Both twins were needing to stay in the NICU before coming home. The basically “normal” baby (Brandon) came “home” (to my parents’ home) after 10 days in the NICU, but Josiah remained there for about 2 months before being transferred to the University of Michigan Hospital for Open Heart surgery.
My husband and I had been quite involved in our Northern Michigan church before becoming parents. We had been the youth leaders/pastors for a period of time and also both very active in the worship ministry. When it became known that Josiah would be having heart surgery both pastors traveled South to visit with him (and me) in his birth hospital. It was a fairly awkward visit as the senior pastor was visibly uncomfortable in the presence of this very small (about 4 pounds then, having been 2# 6oz at birth, a condition called IUGR–Intra-Uterine Growth Retardation, very small for gestational age) and sickly premature infant. They did ask how they could help our family and offered to stay with us at U of M during Josiah’s upcoming heart surgery, but I did not feel “safe” in their presence so declined this “service”. I suggested that they could have some families in the church either provide meals for my husband, or invite him over for a meal as he was living alone (in order to work) and coming downstate to be with his family each weekend. This resulted in one dinner invitation for my husband during that extended time of extreme stress and isolation.
Years later we ended up discussing that early time and how uncomfortable we were with how the senior pastor, in particular, handled us and our situation. There was something about things that never really sat right, though it was hard to pinpoint. Our friends had also been attending our church during that time and were quite close with my husband in particular (he and our oldest son had both participated in their wedding). They provided some needed perspective about how our “heart surgery baby” was being handled by our then pastor at that time. According to them he would brag about the small sick baby from his congregation, kind of like a feather in his cap about how he/the church were doing so much to “meet our needs”. Apart from that hospital visit (which was a significant drive and Not requested by us) and that one meal for my husband there was nothing done for us by our church…including during multiple surgeries and intensive home interventions from government program workers for about the next two years before we left the area. I forgot, the Senior Pastor did visit me and the boys in our home at one point, I’m not sure when, and asked what I needed. When I said that I could really use a friend he exclaimed (in seeming outrage) “I can’t get you friends!”, which wasn’t what I was actually saying. Needless to say, talking to pastors about “issues” has never been very high on my priority list (and perhaps I’m too picky in this arena given my background in Christian Counseling)…
In the early days after the twins’ birth, when we were finally all back in our own home I heard a very moving story on the local Christian Radio Station. There was a family that had given birth to a very medically fragile child and they had been surrounded by love and support from their natural and local church family. This involvement rose to the level of round the clock shifts to provide extra assistance during the early weeks, and perhaps even months, of intensive neediness. What was portrayed seemed so ideal and so far apart from our own experience that I was very saddened at that time by how unsupported we ended up feeling from our local church family (our natural family being hundreds of miles away and helping us with housing/babysitting during medically based visits).
Because of our son’s complex medical needs, which were all being treated and followed at U of M, a good 3 hours South of our then home, we began to explore the possibility of moving closer to this needed ongoing medical care. Ultimately my husband went through a job change that allowed him to work downstate and live in my parents’ home for about a year, commuting to our home for the weekends, while I stayed North with our three sons so that we could sell our home ourselves (For Sale By Owner). The boys and I would head South with their dad for any weeks where Josiah had medical appointments and return home the following weekend. This situation was extremely stressful for all involved and for the most part we had no support from our local church. I lived in extreme isolation during the weekdays, rarely leaving the house because of Josiah’s fragility and risk of infection, etc. In fact I was shocked to find out that the woman I considered my closest friend from that church had been attending a weekly bible study a few houses from my own, but she had never stopped in to see me or the kids nor to check on why we attended church so sporadically, if at all. That lack of attendance was due to the fact that Josiah contracted life-threatening RSV (Respiratory Synsichial Virus) and required lengthy hospitalizations for it twice in the first year of life–basically taking him out in public was risking his life.
When we finally accomplished moving the entire family downstate and got situated in our “new” home, we began searching for another church home. As the twins were now toddlers (2), our oldest son 4, and our daughter an infant this was an extremely challenging process. If we found a church that had sufficient nursery capacity they rarely, if ever, were able to handle the magnitude of Josiah’s behavioral or emotional needs for the duration of a worship service and either I or my husband would need to intervene with him, sometimes multiple times in one service (this was before we knew about “autism”, but even after such a diagnosis we had minimal autism treatment so it was more just an “ah ha” explanation for us about what was going on with him). This really meant very sporadic church attendance overall as it was very difficult to “get anything” out of a service being so distracted by Josiah’s needs. The magnitude of those needs was also a major reason why we sought the support and sustenance of a local church “family”, as a way to cope with the massive pressures of the special needs family’s life.
It was a number of years before we began attending our present church and we ultimately went there because it had a bit of a “comfortable old shoe” component to its ambiance for us. During Clarissa’s infancy I had attended a MOPS (Mothers of Preschoolers) program at that particular church and felt that it had a pretty welcoming atmosphere. Because of that positive MOPS experience, and because the church was pretty local and seemed relatively welcoming we eventually began attending more and more frequently.
Since our children were then mostly in their elementary years we were no longer battling the nursery situation. Also, this church has a fairly limited “Sunday School” type programming, so we often just kept Josiah with us during the service in order to minimize some of the upheaval. Josiah has always had a true worshiper’s heart for the Lord! This means that either in church or during times of spiritual meaningfulness (family devotions and/or communion, etc.) he was more attentive and/or more behaviorally appropriate than he might otherwise typically have been. That meant that at least sometimes he was appropriate to attend the kid’s programming, and having him included in some musical kids productions was a definite blessing.
Even though our current church home is relatively “special” friendly there are still glaring times of insensitivity that can be on display. A couple years back our daughter was nearly moved to tears while at a youth event when she observed how her special brother was not at all appropriately included in a physical activity. His processing challenges and poor coordination meant that he was rather bowled over and disregarded during a sporting event. Clarissa was very sad that the attending leaders were either unaware or unconcerned about how Josiah (and his sister) was being hurt by not being appropriately accommodated. It would be great if either of them would have been assertive enough to speak up and seek help during such difficult experiences, but that is unlikely to happen. That means that people in leadership need to develop increased observational skills and sensitivity and perhaps creativity in how they reach out to people and families that are “different” and who may need extra help, patience, or understanding…
Being able to reach out and embrace kids/adults with special needs and their families really should become a primary mission of virtually any local church. The uniqueness of the needs represented would mean that staff and parishioners would need to be especially sensitive to where a given family was in multiple domains. There could be great opportunities to reach out in service to such families who often face more than their “fair share” of crises and upheavals. Having a ministry targeting special needs families could mean a much more vibrant style of community outreach and Christian witness. The love and compassion, gentleness and patience, joy and peace, kindness and self-control that Should accompany the Christian life would be the ideal characteristics for people reaching out to special families to possess. Wouldn’t it be wonderful if the Lord would lay such a burden on the hearts of so many in ministry?
Until such a time as that ideal scenario presents itself, those of us who know the Lord need to allow Him to move in and through us in developing eyes, ears, and hearts of compassion toward one another…and especially to people and families that are often broken and hurting. And if you come from a special needs family it is almost certain that you bear burdens and wounds and need the love and tender mercy of the Lord poured out into your life. The author referenced at the beginning of this post took a long hiatus from church and didn’t really raise her kids much in the faith. Although she herself is attempting a return to church now, it is unclear what spiritual relationship her kids have–and those losses are at least partially attributable to an incredibly insensitive church leader who by her demeanor may have inflicted permanent damage on a vulnerable family…How Tragic!
May the Lord give His wisdom to His people that they/we as individuals and as local church bodies may open their/our eyes to the many needs around them/us represented by special needs families. May they/we choose to see and to give of themselves/ourselves in time, prayer, emotional support, or tangible means of assistance and so reach out to so many of the vulnerable, lonely, hurting, and fragile within our communities. Consider the Randy Stonehill song () below which beautifully portrays the need for each of us to be Christ’s hands and feet to a hurting world…Blessings to All, Valerie
RANDY STONEHILL Who Will Save The Children Lyrics
Cry for all the innocent ones Born into a world that’s lost its heart For those who never learn to dream Because their hope is crushed before it can start And we shake our fists at the air And say “If God is love, how can this be fair?”
But we are his hands, we are his voice We are the ones who must make the choice And if it isn’t now, tell me when? If it isn’t you, then tell me who Will save the children? Who will save the children?
We count our blessings one by one Yet we have forgotten how to give It seems that we don’t want to face All the hungry and homeless who struggle to live But heaven is watching tonight Tugging at our hearts to do what’s right
And we are his hands, we are his voice We are the ones who must make the choice And if it isn’t now, tell me when? If it isn’t you, then tell me who Will save the children? Who will save the children?
As we observe then through our T.V. screens They seem so distant and unreal But they bleed like we bleed And they feel what we feel
Oh, save the children Save the children Save the children
Now we decide that nothing can change And throw up our hands in numb despair And we lose a piece of our souls By teaching ourselves just how not to care But Christ would have gone to the cross Just to save one child from being lost
And we are his hands, we are his voice We are the ones who must make the choice And it must be now There’s no time to waste it must be you No one can take your place Can’t you see that only we Can save the children Save the children Save the children Please, save the children Will save the children? Who will save the children?
Lyrics taken from: http://www.elyrics.net/read/r/randy-stonehill-lyrics/who-will-save-the-children-lyrics.html
Special Connections 