What comes to mind when you think of the words Special Needs? For most, it brings up mental pictures of a person in a wheelchair, or a giggly person with Down Syndrome, or even a blind person with a service dog. And this is the reason I really do not like these words, because this is so not what the words are supposed to mean. While they do include people living with these conditions, it is supposed to include so much more! These words that are supposed to make us feel better and politely explain our family situation in a few seconds, actually make me feel completely isolated and couldn’t come close to explaining anything about my life.
You see, when I explain that I am a special needs mom (and it is very rare that I do explain this to people), I usually get the polite smile, the look over my shoulder to see who else there is to talk to, and the quick exit. If I don’t get that reaction, I get the overly supportive bubbly person who feels my situation more than I do, and I am suddenly bumped into sainthood. The minute I decide to wear that silly little label suddenly the room is divided into camps. There is the camp that feels uncomfortable by it, the camp that is ready to march on Washington because of it, and then there are those rare few people who are just regular about it. But, the worst thing that happens, no matter what camp I find myself in, is the conversation stops, mental pictures about my life are formed, and nothing seems to change. I suddenly become the poster child for every other special needs family in America.
It wasn’t until recently when a very wise woman who works with a respite retreat called, “A Mother’s Rest” used a different set of words that I realized there was a much better label to wear – Extra Needs parent. What does this mean? It means that my children have needs that go outside of the usual daily requirements of parenting, and quite possibly so do yours. These words, unlike their counterparts, open up the doors for so many more families to be included, and this is what every parent of an Extra Needs child wants, to be included, understood and accepted.
Special Needs versus Extra Needs – just how do these two terms that seemingly mean the same thing differ?
By Their Definition
The term “Special Needs” was created as a sensitive way of explaining that a person requires specialized services at school. Because of this, it implies that the only ones included are those that fall under the special education umbrella, which can feel isolating for those families that don’t qualify and for those families still searching for a qualifying diagnosis. Whereas the term “Extra Needs” encompasses so much more. Now we can include families dealing with all sorts of issues that aren’t covered by an IEP (Individualized Education Plan). And to me, reaching families in difficult situations is what it is all about.
By What Qualifies
Since “Special Needs” is a term associated with a legal binding obligation between a school and a special needs family, the government gets to decide what qualifies. This means that in order for my family to qualify, my child needs a government accepted diagnosis. In our family, only four of my seven children qualify. This is fine for school, as my non-special needs kiddos don’t need an IEP or special services to have an equal education. However, that does not mean that these kiddos do not have “Extra Needs.”
For example, two of my kids have ADHD, which is not a qualifying diagnosis unless the child is significantly behind his or her grade level. Let me assure you though, they both had “Extra Needs.” Neither of them fit well in a sit down classroom environment, and I was in communication with school regarding this often. They both needed to be active, so we led a very active lifestyle when they were young. And, I know there are numerous other families out there dealing with “Extra Needs” that are not considered “Special Needs.” What about allergies, depression, anxiety, cancer, asthma, trauma, adoption, and thousands of other “Extra Needs” that didn’t make this list? These families are very important and deserve to be supported too.
By Who is Included
Inclusion is a very big word in the special needs community. Our school district boasts that all students are included in the regular ed rooms as much as possible, and this is awesome! It wasn’t always this way. We need to remember this in other areas as well, and this is the reason I really like “Extra Needs” versus “Special Needs.”
Years ago when we first received the diagnosis of Asperger’s Syndrome Autism for our son, I thought about joining a parent support group. There wasn’t one, so a friend of mine at the time and I created one. The trouble is, it didn’t last very long, because a large group of parents with a different variation of Autism took over and suggested that this group was no longer a good fit for us. Our son was much higher functioning and much older than the other children, and since there were more of them than us, we no longer could be part of the group we had started. I was crushed. It left us with little to no support, and I would never wish this on anyone.
Labels, though they open up a world of services and strategies, can often times isolate, so we really need to watch what labels we use. If in those early days, I had discovered the label “Extra Needs,” I might have been able to discover more similarities between us and the new parents. We were both dealing with kiddos with extra needs, and this may have been the glue we needed to join everyone together.
By The Conversation
As I mentioned, when I happen to tell someone that I am a special needs mom, the conversation tends to stop. It may be that people are trying to be politically correct and not pry into the details of my life, and I have to admit that I don’t want to them to. Or, it may be that those words put them in an uncomfortable situation and they really don’t know what to say. However, say the words “Extra Needs” and ears perk up. Now people want to know what that means, and now I can have an open conversation about how awesome my kids are. I still don’t have these conversations at the grocery store checkout, but in my private life I can explain that my children are just like all other children, except they also have some needs that other families don’t have to deal with. It really is amazing to watch people digest this information, and then look at my child as a person, and not a disability!
By How It Is Viewed
Years ago, when I took my son to the grocery store, no one could outwardly see my son’s Autism. When he had a meltdown, people simply saw a naughty child acting out. I would try to explain that he had “special needs,” but since they did not see a wheelchair or a walker, they did not understand. How could he be a child with “special needs” when he was able bodied? On the other hand, when I take my daughter out in her wheelchair, people scramble to help me open doors and are generally very helpful.
But why the difference? Are people more tolerant of one disability over another? Were the people in my son’s situation just rude people? While I know rude people exist, I believe people reacted differently in each situation for a very different reason. The difference between the two scenarios, is one child fits society’s picture of special needs and the other does not.
If we simply change the words to “Extra Needs,” I believe people may react differently. There really is no preconceived idea of what extra needs means in our society, so it allows for an explanation. Going back to the grocery store situation, had I used the words “extra needs,” it would have given people the chance to ask what I meant. I then could have explained about my son’s sensory issues and how the lights were overwhelming. In my experience, people tend to react better when they are informed.
By The Support
There are literally thousands of support groups out there that offer help for this-and-that and such-and-such! But why in the world do we need so many? It might be because labels isolate rather than bring people together, so we need more groups to match the numerous labels and sub-labels out there. Like in my story form earlier, my community felt the need to break the label of Autism into subcategories, and it did not turn out to be inclusive.
What if we had groups that rather than determine entrance by the label a person happens to have, allows people to join based upon their need for support? I am not suggesting that we rid our communities of groups like the Down Syndrome Awareness groups or the Autism Awareness groups. They definitely have their place. What I am suggesting is that a family dealing with extra needs is a family in need of support. No lines need to be drawn. No categories need to be met. Simply a group of parents with kiddos that have extra needs all helping to support each other to the best of their abilities. This world looks so much more enjoyable to me!
A Mother’s Rest – Affordable, Everywhere, Often
But, where would I even go find a support like this? There is a group out there that is less involved with the label and more involved with the people living with that label, and that would be “A Mother’s Rest.” In fact, this is where the words “Extra Needs” originated. Andrea Faris Roberts, the brainchild behind “A Mother’s Rest,” took a look at the world and came to the conclusion that there are so very many families in need of support. She did not see enough good support available, so she created one.
But this support is different than most. It is inclusive. If you are a parent of kiddos with extra needs, you qualify! And this is why the words “Extra Needs” are so much better than “Special Needs!” If you are a parent dealing with ANY needs that go outside the realm of usual parenting, “A Mother’s Rest” will provide support.
The goal of “A Mother’s Rest” is to help parents in difficult situations find rest, connect with other parents of extra needs kiddos, and find the energy to parent effectively. Andrea believes, “The key is to be proactive in your own care. The non profit makes it possible for others to bless you through donations, and to get the rest and fellowship we all need.”
If you have an extra needs kiddo and find yourself in need of support, you may be in luck! Andrea has been working on creating affordable retreats in areas all around the country, and there may even be one near you! If you are not a parent of an extra needs kiddo, Andrea would love your support to help parents in need. “A Mother’s Rest” is a non profit organization, so all donations are tax deductible!
The next time you use the words “special needs,” I encourage you to think about whether those are really the correct words. If your aim is to include rather than exclude, maybe the words “Extra Needs” would be better.