I can still remember the first special needs checklist we ever filled out. It was March 2005. We had just sent our first dossier to China. Our checklist was quite simple. We stated cleft lip and palate, female and As Young As Possible (AYAP). My husband and I signed it and I quickly faxed it to our agency. It took less than 5 minutes. Looking back on it I am sure the Waiting Child coordinator at our agency laughed her hiney off when she received it! The simplicity of it! Needless to say we were not called for a Special Needs (SN) child referral. Not solely because of the brevity of our checklist, but because our Kiah was in the Non Special Needs (NSN) program. But looking back, what was so important about that checklist for me was that it showed that at that point in time I was just not willing to take a chance, research the options and stretch my thought process. I knew about cleft lip and palate through some earlier research I had done about Smile Train and that was the extent of my interest in exploring other possibilities.
In early Spring 2006 we knew God was calling us to adopt again. Our new agency sent us a SN checklist to fill out. This time it wasn’t really a quick, simple process. The list was 2 pages long and for each special need listed you were supposed to check YES, NO or MAYBE. I poured over that list for weeks. I gave some thought to every special need on the list. I researched and researched. I wanted to be as open as possible while still trying to “protect the climate of our current family environment” as I so aptly put it. Essentially I was trying to figure out what special needs I could check that would give a child a chance at a new life… bless us with another child but…..without the special need being a total…..(gulp) inconvenience. There it is. I said it. This time around we checked YES to about 6 special needs listed on that checklist. Less than 3 weeks later our agency called us with the referral… of our son Luke… and he had a cleft lip and palate. I was so relieved! THAT was the original special need we had wanted way back in 2005! In the back of my mind I thought “whew….we were matched with a child with a special need that is totally manageable.”
We adopted Luke from China in May 2007. And here is where the story changes a bit. Yes, Luke had a cleft lip and palate. And both the lip and palate were already repaired! SCORE! But we soon discovered he had an abundance of other special needs that were undocumented and we were seemingly unprepared for. I felt overwhelmed, deceived, saddened and totally and completely 100% incapable of handling any of it.
And I had to face that question: CAN I HANDLE THIS???
Because truthfully, if you asked me back then to fill out a special needs checklist based on Luke’s issues….there is no way that I would have checked any of them.
Hypoplasia of the Corpus Callosum (brain abnormality)
Growth hormone deficiency
Strabismus and Amblyopia in BOTH eyes
Severe dental issues (caps and extractions!!!)
Global gross developmental delays in cognitive and fine motor
Multiple Processing Disorders
Because straight up…. they weren’t needs I THOUGHT I could handle or WANTED to handle. When I filled out that SN checklist prior to Luke’s adoption I was so afraid of being burdened and trapped by a need I couldn’t handle.
Now here is the truth…even though I thought I couldn’t handle all this…. I’m doing it. Every day. And there are times of struggle (as with anything) but overall… it is a JOY to parent this kid. And even though I didn’t directly choose to be stretched and molded in this fashion…. both Luke and I (and the rest of our family) are thriving, overcoming and we will definitely be better people for this experience.
We all are capable of handling so much more than we think. Imagine what we would have missed out on if Luke was not our son. Imagine what Luke would have missed out on if he had not been adopted. Imagine what I personally would have missed out on learning about MYSELF.
I think this type of knowledge should spur us forward to investigate further, research more and take a chance on a child that may not fit our “mental checklist”. Cause Luke certainly didn’t fit mine! I call my “mental checklist” the one I have that says you want to step out and help but you still want it to be relatively easy and carefree. Is there anything wrong with that? NO WAY. I applaud all families who adopt special needs children. However, how much more could you be offering a child and yourself if you stepped a little out of your comfort zone?
Oh girl, I was so with you on that first SN list I filled out! Thank GOD that He knows infinitely more than we… or we sure would be missing out on a lot of blessings 🙂
Thank you for sharing your beautiful heart so transparently!
Wonderfully written. Great job, Nicole! 🙂
Well said Nicole! I am SO GRATEFUL to see this post! It was worth waiting for … and what a tribute to Luke and his Mommy! HUGS!!!
i know your story well Nicole and am so glad you are sharing it here. you are such an inspiration to me and i am so so blessed to call you friend.
Oh, my! What a great testimony to our God who knows all things! Your love for Luke shines!
I can really relate to your post. We also put some pretty basic things on our medical checklist. My husband constantly reminded me that God would give us the child He had in mind for us. Sure enough…our daughter has lots of medical needs that were no where to be found on our paperwork and I wouldn't trade any of it for the world. She is OURS and we are so thankful that God brought her to us….despite our checklist.
One cleft lip repair can change a child’s life forever. Operation Smile has created a global medical institution comprised of a worldwide network of teaching hospitals and university partners to help train healthcare professionals.
This spoke straight to my heart. Loved and appreciated your honesty Nicole! Thanks for sharing your heart!
I'm just surfing the net doing some research on Plagiocephaly and Autism.
I hope you don't mind me suggesting some things you may want to consider trying in conjunction with what you are already doing:
(1)I would highly recommend you get him a sleep study. Almost all children (like 70%) who have autistic behaviors also have issues like sleep apnea. Since sleep is so fundamentally important it may be that with either a tonsillectomy and/or a CPAP he would show even more improvement.
(2) I'd definitely recommend Cranial Sacral Therapy and Massage Therapy for him as both of them increase brain waves associated with learning and understanding.
(3) I'd definitely recommend you get him physical therapy for holding objects as children with plagiocephaly often times learn to write later and are labeled incorrectly as being developmentally delayed when in fact it's that they simply can't hold a pencil.
(4) I'd get him speech therapy too if he needs it for the same reason that I said it was important he learns how to hold a pencil.
(5) You may want to try the Feingold diet.
(6) I would highly recommend get him regular appointments in a hyperbaric chamber if possible and try to see if that improves him.
I apologize for the suggestions as even as I wrote them they seemed a bit much. But, you seem to be a wonderful parent and I'd keep these 6 suggestions in mind as they may come in handy some day.
All the Best!
can someone explain how the program can NOT document all the needs on the list? Do they simply not know at the time?