At 42 Degrees

At 42 Degrees

Friday, March 21, 2014

On Faith,...


This past week, I was asked to write about our experiences with the Church of the Highland's Haven Ministry. As a people of faith, church and church community are important to us and the following is a testimony to how the Haven Ministry has been such a positive force in our lives. This is our story,...





Haven Ministry and Us – a Testimony
March 15, 2014





            Our formal introduction to the special needs community took place two years ago in 2012, when our third son, Isaac (two years old) was diagnosed with Apraxia, a rare motor processing speech disorder, and flagged for suspected Autism.
            Needless to say it was a very bewildering and stressful time for our family with our precious child unable to speak, unable to follow directions and social cues, and unable to keep his hyperactivity and sensory overloads under control in public settings, while we scrambled to arrange Early Intervention and therapies – speech and behavioral, and to learn all we could about the special needs community.
            Let me give a shout out to our state’s Early Intervention Program, the professionals were kind, caring and very punctual about getting Isaac evaluated and services provided. Also: The Bell Center with their early intervention classes which were instrumental in getting our little guy off to a good start toward classroom structure with one-on-one instruction. At present, Isaac is being serviced by The Public School’s Special Needs Preschool Program, and again our family is grateful to the kind and professional special needs teachers, aides and therapists working with him on his challenges and helping him to meet his academic goals such as sitting still for a story, which is a skill that is very difficult for our four year old son, who was diagnosed in 2013 with Atypical Autism: PDD-NOS – Pervasive Developmental Disorder – Not Otherwise Specified.
            It is important to note that Isaac’s Autism is Atypical and that Apraxia does not affect Isaac’s hearing because it makes his disabilities not readily noticeable and that does affect how Isaac is perceived by the community at large, or in other words it makes it very easy for our child’s hyperactivity or inattention, or lack of speech to be misunderstood, for he looks like a typical four year old, and quite naturally others expect Isaac to conduct himself like a typical four year old, but that’s not only unrealistic, it is impossible.
            The combined diagnosis of Apraxia and Autism have sent our family through a bewildering labyrinth of unfamiliar medical terms, therapies and research trying to get up to speed on disorders that even professionals cannot fully explain. Our Isaac is not only a charming little individual, chock full of personality – he is precocious and exceptionally bright, learning the entire alphabet – in order – with each phonic sound for each letter – and each sign language sign for each letter by the time he was three years old,…yet,…Isaac at four years old cannot readily answer: “What is your name?” – very bewildering and heartbreaking.

Enter Haven’s Ministry. As people of faith being part of a church community is very important to us. However having a special needs child changes the game plan, not just for the rhythm of daily home life, but also for social interaction outside the home. Autism is a misunderstood disorder, which we have discovered very often leads to isolation for the child and the child’s family. It’s tough, I won’t sugar coat it. It hurts to know that your child is not able to participate in activities, such as story time at the local library or pee-wee sports. And then there is church.
It is nerve-wracking not to mention heartbreaking to take your special needs, nonverbal child to church and leaving them with nursery volunteers, who wave dismissive hands and tell you hyperbole tales about someone’s uncle’s third cousin’s nephew who didn’t start speaking until he was five years old, but now is in the state senate, and that there is nothing medically wrong with your child, he just needs more discipline and that it is utterly ridiculous for us to be wasting our time teaching him sign language – because no one will ever be able communicate with him.  Or even worse having a nursery volunteer confess that she was screaming at your child, because he would not sit in a chair like the other ‘good’ children. Cringe worthy experiences that make you feel like your child is merely tolerated in the sacrosanct portals, and not welcome.
Even in the best circumstances the church environment is not safe for special needs children, for too often only one or two adults, or even teens and preteens are available to watch more than a dozen children, including your nonverbal-hyperactive child, your fearless nonverbal-hyperactive child, your fearless, prone to wander, nonverbal-hyperactive child, and instead of worshipping – you are racked with fear – and praying for your child’s safety – disturbing the service to sneak away and check on your child – and too often – having to leave the church service early with your sensory-overloaded child.
What is a family of faith to do?
First, we cast no stones, unless you are intimately involved in the special needs community – as a family, teacher, doctor, therapist, you have no conception what a special needs child, nor their family goes through – on a day to day basis.
However it is surprising that being in the Bible Belt of the Deep South, that there is not a greater outreach to the special needs community by church ministries. We are the forgotten, but our children are not angels, nor are we, the parents, saints. We need spiritual community, we need worship, even more so than many typical families, for we live with life and death, if not our own child on the brink, then the mother across the waiting room, or a classmate: medical issues are pressing and bewildering and expensive and stressful. We are grieved for the loss of what our children are not capable to experience – no tee-ball for us, we are still working on potty training – hopeful that our child will be fully trained before elementary school begins. And there is the uncertain future. If anyone needs prayers, hugs, support and unconditional love and acceptance – it is special needs families.
Some churches do try to be inclusive, I don’t want to suggest they don’t and that in some congregations the special needs members are not cherished, but it is sadly the exception, not the rule, and searching families find only a vast void.  There is a great need for special needs inclusion, but not even the largest church in our area has a special needs ministry and when I spoke with a director of the children’s ministry because we met by happenstance and she was extolling the virtues of their new children’s wing and I mentioned the needs of special needs children, she gasped with embarrassment and sputtered, “We’re,…just,…just not equipped for those needs.”  - But if the largest church in our area is not equipped to meet the spiritual needs of special needs children, nor has any interest in becoming equipped aside from following government regulations for building accessibility: what does that mean for my child and other special needs children,…who are among: the very least of the least of these,…
However there is a higher power, and the LORD is very aware of our children’s needs, and there is hope, because of individuals like Ms. Stephanie who is the Haven’s Coach, at Church of the Highlands at our local Campus. The story of how our family found its way to Church of the Highlands and the Havens ministry began 2012 in a speech pathologist waiting room, when another mother and I began to speak about spiritual matters, and she glowingly mentioned the Havens ministry – which I was aware of, because besides the Havens there are at least two large churches in the greater Birmingham area that do have vibrant special needs ministries and outreach, but they like Church of the Highlands’s locations are at least forty minutes away from our home – and gasoline is not cheap, these days, nor are doctor’s fees, speech therapy fees,…in short it wasn’t feasible, and our family either worshiped at home, or took turns attending church, or bit our nails during service with Isaac in the nursery.
Then Church of the Highland’s a campus open in our area, in February of 2013, and by divine intervention, which would take too long to chronicle, but the LORD directed our path to attend the new campus in April of 2013 – a huge step of faith for us,…because we were taking our nonverbal child, to a new church, with new individuals, who did not know us, or our child, and we were frankly prepared to walk in the door and be disappointed by tactlessly, tactful individuals who were oh-so delighted we were visiting with our child,….whom they would gingerly appraise and pat on the head,…and tolerate the little dear,…because that is the Christian and political correct thing to do.
WOW,…were my husband and I ever overwhelmed by our first experience at Church of the Highlands and the Havens Ministry. I was shaking in trepidation, my husband was shaking in trepidation when we approached the children’s check in and hesitantly and even apologetically mentioned our child had special needs. Immediately Ms. Stephanie was on hand and not only was she genuinely delighted to meet us and Isaac, she was one of the few individuals who actually understood what Apraxia was and what in entailed, which was very impressive because it is a very rare disorder, but even more impressive was that she immediately began to sign to Isaac: Hi, How are you? We’re glad you’re here.
Then Ms. Stephanie began to explain to us how Isaac would be assigned a Haven’s team member as an aide in the regular children’s preschool class. An aide? My husband and I exchanged astonished glances, not quite sure we heard correctly – it sounded too good to be true,…an individual would stay with Isaac and help him with his communication and re-directional needs? Not only that, but Stephanie explained that Isaac’s security label would be flagged so the other children’s workers would be aware that Isaac had special needs. Honestly with the kindness and reassuring, reassurance we experienced, it felt like we had stepped into a wonderland. Isaac with his aide, happily left for his preschool class, my husband and I attended worship and were so blown away by the message, and the divine presence of the Holy Spirit, which was so strong even though we were visitors,…we felt like we were home. So much so, my husband and I stayed for the growth track after church, which meant Isaac would be in the nursery for ninety minutes longer,…but he was happy, and so well cared for,…we didn’t have a qualm,…and that speaks volumes about our first experience with the Haven Ministry.
Within six weeks, and a background check, and hurray that all Haven Team members undergo a background check, I began to serve in the Haven Ministry under Ms. Stephanie. The ministry is that important and that needed and I am honored that I am allowed to share in the hope and encouragement it provides. Our Isaac is not just tolerated at Church of the Highlands, but Isaac is cherished, from the security guard who guards the children’s department and, cheerfully helps to chase down our little guy if he get a chance to dart out the door, to the welcoming Check in Team, who have learned how to sign, Isaac’s name, to the very special individuals who dedicate their Sunday mornings and Wednesday evenings to spending time with our son,…to chasing after him, to listening to his echolian chatter, to sitting under the table with him, if necessary, to taking him on sensory seeking walks, or to holding him if he is overwhelmed,…and then to take the time to tell us,…what a joy and privilege it is to be with Isaac,…and you can’t fake that kind of enthusiasm or sincerity. These people love my child, they love the LORD, and they love my family and tell us so, in word and deeds.
Saint Francis of Assisi is said to have said:
“Preach the gospel at all times and when necessary use words.”
That quote pretty much defines what the Havens ministry is all about. With Autism, compounded with Apraxia it is extremely difficult to know what Isaac understands, it is difficult for him to sit still for a Bible story or a Bible song and with Apraxia, he cannot yet readily say his own name, much less repeat a Bible verse. How else will my son, and other special needs children know about the gospel, unless they experience it in action. Love one another. Be kind to one another. The Haven’s Ministry is not just babysitting my child or providing respite, but they are living the gospel, as witnesses before my child,…they are providing a means and reference for him to know what it means to love and cherish one another – as is.
For a special needs family – to know – there is a place you belong – is a reassurance than cannot be fully expressed. Our gratitude cannot ever be fully measured,…our debt of love will never be paid. We have a church home, where we can worship, and grow, and even serve for the special needs individuals and their families have value. Until we are called to our heavenly home, and are made whole, we will reside in the haven, of the Havens Ministry and pray that its circle of influence will grow to each and every special needs family not just in our area, or nation, but the world,…for the harvest is ready,…but the workers are few,…and the special needs community no longer needs to be forgotten, or left behind. Thank you.
           

 For Isaac

            


Until I post again,...may God bless and keep you!

2 comments:

  1. I am autistic and proud to be in the faith. It's not a sin to be different from the rest and I think Jesus proved that statement true. Leading a perfect life, dying painfully for the sins of the world, and rising from the dead is not normal, so why do churches say we have to be?

    ReplyDelete

Note: Only a member of this blog may post a comment.