The Stigma of Special Needs

May 27, 2010 guest post 4 Comments

Today’s post is written by a guest contributor, Holly, from Purpose Driven Family. Holly has three children, her youngest, Josiah, is from China. And they’re waiting for their newest addition, Elaina, to come home from China…

Like it or not there is often a stigma attached to the label “special needs”.

To the outside world it often means something is “wrong” with your child.

I hate it but I used to be in that world. I had no idea. I was ignorant. And I never thought about adopting before we were called to adopt.

Not once. I wish I had that story, but I don’t. When my husband and I both realized that God was calling us to adopt, we were pretty clueless.

We assumed that we would adopt a Caucasian child. We assumed that we would adopt an infant. We first looked to domestic adoption but it was clear to us that God had something else in mind for us…something that would take us farther outside our comfort zones than what we’d dreamed up ourselves.

Isn’t that just like God?!

We next pursued the idea of adopting from Russia. It made sense to us. If we were supposed to adopt internationally, then surely Russia was the place God would send us. Blonde hair, light skin… no one would ever know the child was adopted in our family!

But through a series of events, God closed that door to us as well.

He CLEARLY and separately gave both me and my husband a prompting to consider China. I was elated because I assumed that meant we would be getting another daughter and I’d always wanted a handful of girls! My husband held firm to the believe that God had spoken to Him that we would find a son.

In China? No way. Did I mention we were clueless? Yep. We were!

So we began slowly…and before we were very far into the process we were asked about what special needs we might consider.

What? Special needs? No thank you. Healthy please. As young as possible please. And beautiful to boot if you don’t mind.

I know. It sounds selfish, but it’s the truth.

But there was no peace in saying no. (Because God had already chosen our child…a child with special needs!) So we wrestled with that list. We prayed and we discussed and honestly, some of the conditions on that checklist were words I’d never even HEARD of before…
couldn’t begin to guess what they meant!

It was a daunting task that checklist. But slowly, we began to work through it checking things here and there, erasing, re-checking and all the while sort of hoping that somehow we could get away with finding a child that didn’t really have any of those conditions. In the end I wrote a note to our case manager telling her that we simply couldn’t know what God had in store for us so we checked off some of the boxes but really were open to whatever it was that God had for us.
And surely He knew that we couldn’t handle anything major, right?

And within weeks we received a referral for a 3 year old boy with a special need I still can’t remember how to pronounce. We never got the paperwork…. they tried and tried to email it but it just wouldn’t go through. So we spent the weekend praying and decided that God already knew so we could make the decision without the paperwork! God clearly told us both, again separately, to wait. This boy was not our son. He had a chromosome abnormality. It was confusing to us, but not to God.

I remember calling our agency on Monday morning to decline his referral in tears. I felt so GUILTY for saying no to a precious orphan. Though I had never seen his face, I knew he was precious. (I later saw his face and oh my word was he a doll baby!) I felt like I was abandoning him all over. It was the worst feeling.

I later found out that 15 minutes after I called to say that we were not going to adopt him, another family called to ask if the agency had a child with that specific medical condition that he had! They had another child with the same condition and felt prompted to call our agency on that day at that time to inquire. And he found his family! That really helped me to trust more in God’s leading. If we took a child out of guilt, we could be stealing someone else’s blessing!
The next week we received another referral call. Another little boy. 15 months old in a city in China even our coordinator couldn’t pronounce at the time! (Huhehot, also known as Hohhot, Inner Mongolia!) His special need – his right leg was bigger than his left leg. That’s it! Right leg was 2 cm longer than left leg. No word if it was also bigger in circumference, just length. Otherwise healthy. We couldn’t believe it! We poured over his medicals, talked to a doctor, prayed prayed and prayed some more. Within 2 days we both had our answer – he was the one – our son. His special need wasn’t even on the check list!

And upon our return from home we found that his leg length discrepancy didn’t slow him down at all. He compensated for it just fine. He saw specialists, had tests run and his official diagnosis? Ideopathic hemihypertrophy. Basically it means they have no idea what caused it but the lower half of his body is larger on one side than on the other.

We may have lifts put on his left shoes at some point. He may require surgery at some point. Our goal is to wait until he is finished growing and then evaluate to determine if it needs done and if so, do we lengthen the shorter leg or shorten the longer leg. We also have him screened for a condition called Wilm’s Tumor by having renal ultrasounds done every six months. Apparently there is some tie between the tumor and children with hemihypertrophy. We will continue to screen twice a year until he is six and then only yearly through childhood. He is a totally normal and healthy child. When someone approaches me and asks me what is wrong with him or how did we get a BOY from China… I struggle honestly with how to answer them. I usually tell them that there are so many precious boys in China waiting for families. Then they ask, “Well what’s WRONG with him?” They assume something is “wrong” because he is a boy… from China.

The wording stinks. Sometimes their hearts do not. I have to remind myself #1 I used to be ignorant too and #2 my son is listening to my response and my first priority is to consider his needs. People are nosy. But if we don’t TALK about special needs… the stigma survives!

What I’ve learned since our first adoption experience is that “special needs” kids are just like ANY OTHER kids! Really! I almost wish we could find a new label… but it would still be a label. Healthy. Special Needs. Both labels. Most parents want healthy children. There’s nothing wrong with that, but if more parents could recognize that children with special needs really are “normal” and wonderful and funny and BEAUTIFUL and they just might so happen to need a specialist once in awhile… or maybe often… or maybe only for a season.

After Josiah, God made us aware of the AIDS crisis in Africa and we realized how many children are orphaned because of AIDS. We realized how many children are infected with HIV because of lack of medications, lack of knowledge, lack of supplies, and we began to pursue the adoption of an HIV+ child. We made it through our homestudy approval and agency approval but God shut the door at the midnight hour and the child we were pursuing went to another family. They are a wonderful family and I am thrilled to have gotten to know them a little. She truly was meant to be theirs. We went from checking the boxes with trepidation to actively seeking a child with HIV. That’s a jump over the pond, don’t you think?

It isn’t because we became better people or more generous or kind-hearted or anything like that. It’s because we realized that love has no boundaries. A medical need or a label doesn’t define a person! And
just like our biological children, we didn’t get to choose… they came out with their own distinct features and DNA.

There is a peace that comes with letting go and letting God show us our children.

The Lord has called us to a new “special need”- imperforate anus. What? You’ve never heard of it? Well join the club! We hadn’t either! We felt a tugging towards children with heart defects and God confirmed it to us in His unique way that yes, our next child would have a heart defect. But imperforate anus too?

And just like God, He has given us all the tools we’ve needed so far to learn about the conditions so we will be able to care for our daughter when the time comes.

We have chosen to let go of fear and embrace the blessings to come in the form of another CHILD. We will embrace HER. Her medical conditions are not HER. They are just a small part, and we are going to work through those together. As a family. After all, we have special needs too, but nobody bats an eye at our “handicaps” of corrected vision, herniated disc, endometriosis, allergies, irritable bowel syndrome, etc!

I hope you are encouraged to consider a child who may be labeled special needs. I can assure you, the blessings will be all yours!

4 responses to “The Stigma of Special Needs”

  1. Wife of the Pres. says:

    Thank you Holly for sharing over here.

    I can so relate to so much of what you shared.

    There is NOTHING wrong with our children except they have an extra dose of being SPECIAL!

    I once wrote a post titled "Not Special Needs … Just Special!"

    That about sums it up! Again, thanks for sharing. Hope you'll be writing some more over here.

  2. Amy says:

    I can remember when our hearts were first opened to SNs. I read a blog of a family adopting a child with a birthmark on the forehead that darkened when she was upset. Our oldest son has the same thing, and I went, "That's a special need?!" Suddenly, I wondered what else was considered SN. That's why I love this blog. The more I learn about these SNs, the less of a big deal they seem. I find myself open to things that just a few years ago would've scared me to death. And as I have learned more, I have discovered that everyone at my house would've been considered SN (repaired tib/fib fracture, IBS, hernia, dental issues due to injury to face).

  3. Jennifer and Matt says:

    Great post Holly! I can so relate! When God spoke to us and opened our hearts to special needs we started sharing with others our plans. We immediately got "that look" from several of them. Once I explained what needs we were open to and that had I been born in China I would have been considered special needs (birthmark on back of my leg and arm), that seemed to stop them from questioning our decision. Our son's special need (now corrected) does not define him. He's the most amazing child, strong as ox, has the most determination of anyone I've ever seen and on top of it all gives his mama the best hugs and kisses. Is something wrong with him? No way! Is he special? most definitely! He's our special blessing. I pray that more and more people will get over the stigma of this label and open their hearts to special needs.

  4. The Gang's Momma! says:

    What a great post. And I love the intentional seeking of a special child. I mean, all of our kids have needs. Kids on the Waiting Child list just tend to have needs that are obvious to the world, medical or otherwise.

    I have to admit, I also enjoy engaging with someone over the conversation of adoption and sharing that our girl came thru the SN program. I particularly enjoy seeing their perspective on SN's change when they realize that she's VERY special. And that they never would have known about her need if I hadn't mentioned it. It's been such a great tool of sharing how God brings these kids to homes that are just right just for them. . . The stigma that most of them hold to seems to fade away as they are blessed to interact with and observe my Li'l E's outrageously big personality and awesome heart!

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