Special Needs Awareness

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A while back, the "Mom’s Club" that I am involved with asked me if I would like write a column for their newsletter about children with special needs. Though I didn’t really need something to add to my "to do" list, I thought I’d give it a try and see what became of it. I discovered, as with this website, it has been very therapeutic for me and it has been very well received by the other moms. In my feeble attempt to "educate the world", I began writing these articles monthly. I have found a place to educate others about children like Madison and how to deal with moms like me who have children with special needs. I thought this might be another nice place to put these articles so everyone else in my life might gain a better understanding of how to better understand our world and other children with special needs.

July 2006
 
I thought I’d write this column for a few reasons. I used to be a mom with only  a "typically developing" child, and now I am also a mom to a child with "special needs". Therefore, I kind of feel like I understand both worlds, and I definitely feel like I am living in two different worlds!  It is my hope that by raising awareness, these two worlds can connect a little better. 

As many of you know, my beautiful little Madison was born with a muscle condition that has made her significantly developmentally delayed. Eventually, she will probably be diagnosed with Cerebral Palsy. This column will not be about her, but about kids like her and how moms like you should deal with moms like me!

In these two different worlds that I have been inhabiting over the last two years, I have learned a lot. Too much to mention... But in relating to our Mom’s Club, I’ve realized that there are lots and lots of moms out there who have children with "special needs", we just don’t see them around too much!

These moms are busy carting their children to therapy appointments, visits with specialists, doctors appointments, support groups, special programs, etc. etc. Most of these moms that I know now would only think about joining a playgroup of other children with special needs. All of those "typical" kids are very intimidating, and many parents just might  not be ready to see the discrepancy between their child and the rest of the world. There is a reason there are not a lot of special needs children in our club.

I feel lucky. I was in this beautiful, wonderful MOM’s club before my little Maddie was born. I made friends and amazing connections which helped me significantly as I began to learn about what was happening to my baby. I have never once felt judged, slighted, or intimidated by any of you and your beautiful so-darn-typical kids! I believe that is because this is a very accepting group of women. But if I was new to this area after Madison was born, you could bet your bottom dollar that I would probably not be in this club! I wouldn’t know any of you, and I would be hugely intimidated joining a fairly large club which had no other children like my own.

More to come later, but my point right now is this...   If you know of a mom or see a mom with a child with special needs, (not that all special needs are visible to the naked eye...) tell them about our club and invite them to join us. They may not want to join, but at least try to include them. They’ll probably be shocked and touched that you struck up a conversation with them in the first place!

August 2006
 
A Note on “Staring Kindly”

I know how awkward it can sometimes be when you see a child with an obvious “disability”.  You want to look out of curiosity (we are all curious...), you want to see how the parent is handling the child, and you probably would like to know what the problem is.  But you know it is rude to stare, and you aren’t sure if it is appropriate to strike up a conversation.  So you do that weird side-glance, or you do that I’m-trying-so-hard-not-to-stare-so-I’m-staring-straight-ahead look, or perhaps you already know how to stare kindly. 

      I didn’t have to deal with much staring until a couple of months ago when Maddie got her walker.  The first time I took her to the park with it was a surreal day.  All of a sudden I was that mom who had the child that everyone was staring at!  But, surprisingly, the stares did not make me mad or sad.  I knew I had done “the stare” before and I knew that most people were just curious.  But the worst were the people who were trying so hard not to stare!  That just feels weird and uncomfortable.  Some people might have been staring judgmentally, but I believe those stares are few and far between. 

      The weirder thing, though, was that no one talked to me, and I didn’t talk to anyone.  I’m usually the first to strike up a conversation with a stranger, but I didn’t know what to say to any of them, either.  Then one lovely lady finally said, “Wow!  That’s a cool purple walker, where did she get that?”  I love that lady!  I didn’t want to inundate her with our entire story, but it gave me the chance to start a conversation with someone who seemed interested.  And I certainly didn’t want to talk just about Madison, I just wanted to talk - how’s the weather today - how old are your children, etc. 

      Now that I go places with Madison more often in her walker, things  haven’t changed much, but  I usually come across at least one person who makes our day.   Even if they are commenting on her cute outfit, or mention someone else they know with a walker, any conversation helps.  They might not all know the exact “right” thing to say, but I so appreciate anybody who tries to strike up a conversation with us.  There is nothing right or wrong to say - just say something!   That is a hard thing to do, and I probably would not have done it pre-Madison.  And I am certainly no “staring-expert” now.  Each day I take Madison to her therapy unit and see other kids there, I certainly stare and I’m not quite sure what to say.  But I do believe that I am “staring kindly”.  Whenever I see a child with special needs now, I want to know their story, I want to see how they are progressing, I want to understand how the parents are dealing with everything, and while thinking all of this, I am probably staring.

      But let’s face it.  It’s just an awkward situation, and unless you really know the parent, you might not know where to put your eyes and you’ll never know the exact right thing to say.  And I can’t speak for all parents.  Maybe not all are like me and don’t want all of the questions or any of the small talk.  So each situation is different and everyone just has to use their best judgment of how to stare, what to say, or when to say something.  But just remember, those “special-needs” parents are parents just like you.  They did not choose to be in their position, but now that they are there, they  probably don’t want to be treated any differently from anyone else.  

 

September 2006
 
Cerebral Palsy - An Introduction

Our little Madison has finally received an official diagnosis of Cerebral Palsy.  Though I promised not to  focus solely on my Madison’s “special needs” in this column, this news has been the focus of all of my thoughts, so it was the only thing I could think to write about.

This diagnosis was not a surprise, we had figured the doctors would eventually give her this “label”.  It was a bit shocking to finally receive an actual diagnosis, though, and to see it  in writing - big, bold writing, I might add!  Over the last year I have learned so much about Cerebral Palsy (CP for short)  and I realized how uneducated I was about the thousands of childhood afflictions, conditions, diseases, etc. that are out there.  I thought this might be a good place to share all of my new knowledge.

The words “Cerebral Palsy” sound very scary to many people.  I have learned that they are not scary words.  CP is not a disease, it is a condition.  It is actually more of a description, if anything.  There are hundreds of thousands of people walking around with this condition, though many of them go unnoticed because their symptoms are so slight.  Basically, “cerebral” means brain and “palsy” means muscle problem.  So you might have CP if your brain is not making your muscles work quite right.  Many times CP is a diagnosis of exclusion - if they can’t figure out any other reason for the muscle problem, they call it CP.  That is definitely what has happened in       Madison’s case.

There is absolutely no cure for Cerebral Palsy.  At this point in time, there is no way to go in and fix the part of the brain that is causing problems.  Sometimes they can’t even figure out what part of the brain is causing the problem (as in Maddie’s case).  But though there is no cure, there is a lot of hope for children with CP.   CP is not progressive.  That is, people with CP can never get worse.  They have what they have and that doesn’t change.  Though Madison’s muscles can never be “fixed”, they certainly can be trained.  That is why “early intervention” is key to having a functional life.  They earlier you try to teach the brain to work the muscles correctly, many    people with CP can end up having a fairly “typical” life.  Also without all of this therapy, the muscles could grow and develop incorrectly, therefore causing some pretty horrible long-term problems.  A quick vocabulary lesson: “early intervention” is for children under three who have special needs, “special education” is for kids over three.  (Took me an entire year to figure that one out!)

There are many types of CP and many different degrees of it.  Madison actually has a combination of three different types, so they call it “Mixed CP”, which happens in about 10% of all CP cases.  In some cases, the entire body is affected, but in others only a few muscles are affected.   Almost all of Maddie’s body is affected, but not all of her muscles are severely affected.

How does a child get CP?  There are many different causes, but most of the time, the cause will always remain unknown.  We have no idea how this happened to our little girl. Babies who  are premature, have a traumatic birthing experience, or have to be put on a ventilator have a higher risk of having CP.  Quite often something happens in utero, and that something is usually unknown.  This is one of the hardest parts of accepting this condition.  I had a very healthy pregnancy and delivery, without any trauma, so Madison’s cause will forever be a mystery.

How typical will Madison’s life be?  At this point we have no idea, as is the case with most youngsters with this condition.  We can just pray that all of these hours and hours of therapy are helping all of those beautiful little muscles learn to move the right way!   We have very high expectations for this little girl, and know that her amazing perseverance will help her go a very long way.

In all of my research in trying to figure out my little Madison, I have had the opportunity to learn about many, many other childhood issues.  In the future, I hope to focus on some of these other things, so that we may all become a bit more educated about these things that affect so many families.  If you have knowledge of a particular special need, and are willing to contribute it to this column, please let me know.

October 2006

The Do’s and Don’ts of Special Needs (from one mom’s perspective)

After a year of learning about special needs and experiencing life with a child with special needs, a few things have stuck out that I would never have thought of before. Here are just a few:

Choose your labels carefully. I don’t expect everyone to know all of the latest politically correct special needs lingo; I certainly didn’t before. But use common sense! Don’t use the word "retard" as an insult - that’s just wrong. And please teach your children not to use that word as a put down. I was just with a group of kids and I heard one yell out "retard" to one of his friends and it was absolutely shocking to hear. My child is not "mentally retarded", but there are many kids out there who are, and I have become hypersensitive to labels that are used inappropriately or mean spiritedly. Apparently, "handicap" is kind of out, too, according to all of the literature I have read. I just had someone call Madison handicapped and that was a pretty bad kick in the gut. "Disabled" seems to be pretty widely accepted, though it is a word I am not fond of when describing my own child. But it’s pretty basic - it means not able to do something. I guess that’s my girl... Lastly, I have also learned that it is extremely important to put the child before the label. For instance, you should say "the girl with Down’s Syndrom" rather than the "Down’s girl". Ten years ago, the doctors probably would have called Madison "The Cerebral-Palsied Girl" (seriously) and now she would be referred to as "the girl with Cerebral Palsy". This may sound a little petty, but as the parent of that little girl, the latter is definitely preferred (if there is a need to describe her with a label at all...)

Don’t make fun of the small bus. Maybe my family, friends, and I were the only ones twisted and rude (and horribly judgmental), but growing up, you have all heard the jokes about the small bus. After a someone does something really dumb - "he must take the small bus to school". Well guess what, people, kids really do take the small bus to school and my kid might be one of them! The stereotype really does hold true though - if you have a "special need" and you need to take a bus, it will probably be the small one. Madison has already been offered the services of the small bus and she wasn’t even two yet. I declined the offer, but that sure whipped my family into shape. Now we make fun of ourselves for making fun of the small bus originally.

You don’t need to feel sorry for us. When I’m having bad day or a hard time with Madison, I do tend to seek out a bit of sympathy. However, there are much fewer of those sad moments than of the happy moments. When I used to see families with a child with "special needs" I tended to just feel sorry for them and thought it was so sad that their lives were not "normal". But I came to a wonderful realization pretty quickly in Maddie’s life that not-normal lives can be quite happy too! Life is not always roses, and this certainly stinks, but every family has "issues". I’d much rather not see Madison struggle, but those struggles are shaping her into a pretty amazing little girl. (She’s actually much braver and more daring than her big sister!) We do normal, happy things all the time. We read the paper on Sunday morning, dad gives the girls horsey rides (with a little extra support for Maddie), and we get through each day just like the rest of you.

I realize Madison’s special needs are not as severe as many other children out there, so I don’t want anyone to get the impression that I think I am an expert in all things "special needs". I just hope that my thoughts and perspective might make a few people gain a new understanding and acceptance of this "special needs" world that I am learning so much about.

 

November 2006

Does my baby have a language problem? 

I’m cheating this month!  I didn’t have enough energy to write my own article.  I found  the below article on BabyCenter.com and thought it was a good one to share.  It seems that one of the primary concerns parents have about their children is whether or not they are talking “on time”.   My only tidbit of advice would to be proactive.  Not to OVER react, but if you “feel” your child has a speech problem, go with your gut.  My gut led the way with everything having to do with Madison.  Also, in terms of getting services, especially for speech, it is much easier to get “in the system” before a child turns three.  Also, the sooner you work on a speech problem, the better.  It is hard to determine a speech problem before the age of three unless it is quite severe, but if you have any concerns at all, talk to your child’s doctor.  If the doctor wants to take the “wait and see” approach, and you would rather be more proactive, there are ways to get your child evaluated using other resources.  If you ever need help in trying to understand “the system”, I’d be more than happy to help.

On another note, I have been busy updating Madison’s website.  If you would like to learn more about her and her latest accomplishments, please visit her at:  http://kerigustafson.tripod.com

Question: What are the indications that my toddler needs a speech therapist?

Answer: Toddlers often have trouble with pronunciation and difficulties putting sentences together. A child between the ages of 18 months and 3 years will generally mispronounce many words. It's perfectly normal to have to play a guessing game to figure out what your child is saying, and at times you may have absolutely no clue what she's getting at. That's okay!

Many toddlers substitute an "f" or "d" sound for "th" ("I'm taking a baf") or a "w" sound for an "l" or "r" ("The wion wawed" = "The lion roared"). Consonant blends, where two consonants are right next to each other, are typically difficult ("Soppit!" for "Stop it"), and toddlers often mix up multi-syllabic words or simply reduce them to shorter words ("Gimme dat amal" = "Give me that animal"). All of these mispronunciations are common even up until age 6. What you want to watch for is that your toddler's speech is improving over time — by age 3, most of what your child says should be pretty understandable.

If the problem is not pronunciation but rather that your child isn't
talking or is talking very little, you should act a little more quickly. You should have her evaluated at 20 to 24 months if she's doing any one of the following:

• Doesn't react normally or consistently to sounds. (She may be overly sensitive to sounds such as vacuums or hair dryers yet seem indifferent at other times when people call her name.)

• Mispronounces vowels, saying "coo" instead of "cow."

• Talks using mostly vowels, omitting whole consonants, saying "a" for "cat."

• Uses one catch-all sound or syllable to name most things ("duh" or "duh-duh" is a popular one).

• Uses a word once and then doesn't use it again frequently.

• Doesn't point to common objects in books. (When you say "Show me the kitty cat!" instead flips the page or simply repeats "cat!" but doesn't actually point to it.)

• Doesn't seem frustrated when you don't know what she wants. (She may simply try to get the object herself or just give up very easily.)

• Doesn't seem to be progressing much from month to month.

• Answers a question by repeating part of your question. (If you say, "Do you want milk?" responds by saying "Milk!" instead of a head nod or "yes" response — this is called echolalia, and may be an early sign of autism.)

• Doesn't learn "bye-bye" or react to games like peek-a-boo.

• Still says single words only, and not sentences.

 

December 2006

How do I explain a "special needs" kid to my "typical" kid?

I found this article on Kidshealth.org that is very "kid-friendly" in explaining "Special Needs". If you have the time to share some of this information with your child, it might be very valuable. All of our children are inevitably going to see or know someone with special needs (most already do!) and I think it helps to talk about it so that they might be more understanding and less confused:

Isn't every kid special? We think so, but what do we mean when we say "kids with special needs"? This means any kid who might need extra help because of a medical, emotional, or learning problem. These kids have special needs because they might need medicine, therapy, or extra help in school - stuff other kids don't typically need or only need once in a while.

Maybe you know of kids in your school who need a wheelchair or use braces when they walk. Those kids have special needs. They not only need the equipment that helps them get around, but they might need to have ramps or elevators available. They also might need to get a special bus to school - one that lifts them up into the bus so they don't have to get up the steps.

A kid who has an illness, such as epilepsy, diabetes, or cerebral palsy, would have special needs, too. They might need medicine or other help as they go about their daily activities. Kids with sight problems might need Braille books to read. Kids with hearing or speech problems would have special needs, too. A kid who has hearing trouble might need hearing aids to hear and speech training, too, since it can be hard to say words correctly when you can't hear very well.

Kids with learning problems often have special needs. Kids with Down syndrome might go to a regular school and might even be in your class. But they have special needs when it comes to learning, so an aide (someone to help) might come with them to class.

You might be able to spot a few kids with special needs, but you probably don't notice all of them. A kid could have a problem that isn't noticeable unless you know the person well. For instance, someone could have trouble with anxiety (worry), but you wouldn't know it unless the kid told you about it. Privately, their parents, teachers, and counselors may be working to help them with this problem.

What's Life Like for a Special Needs Kid?

Life can be extra-challenging for a kid with special needs. It might be harder to do normal stuff - like learning to read or, if a person has physical handicaps, just getting around school or the mall. The good news is that parents, doctors, nurses, therapists, teachers, and others can help. The goal is to help kids be as independent as possible.

Other kids also can be a big help. How? By being a friend. Kids who use a wheelchair or have lots of health problems want friends just like you do. But meeting people and making friends can be tough. Some kids might tease them or make fun of them. Be sure to tell a teacher if you see someone being bullied or teased. That's a very lonely feeling.

Also try to be helpful if you know someone with special needs. You might carry the person's books or do something as simple as asking him or her to join you and your friends at lunch. It's also important not to be "overly helpful" when no help is needed. Why? Because just like you, kids with special needs like to be as independent as they can be.

Being friendly to kids with special needs is one of the best ways to be helpful. As you get to know them, they may help you understand what it's like to be in their shoes. And you'll be helping fill a very special need, one that everybody has - the need for good friends.

January 2007

People Say the Darndest Things!

I’m bracing myself for the day when someone says an inappropriate comment to me about Madison, but I have been very fortunate not to experience that situation yet. However, I know a few people who have had some pretty horrible things said to them about their child with special needs.

I belong to an online discussion board for parents who have children similar to my little Maddie, and we were discussing hurtful things that people have said in regards to our children. Fortunately, I didn’t have much to contribute to this discussion. These comments are interesting for anyone to read, and perhaps it might give you some perspective on what "special needs" parents are faced with sometimes. These are some of the situations I learned about (reprinted with permission!):

"Once, I was updating my friend on my child’s latest accomplishment. My friend is amazingly compassionate and a great listener. I mentioned that we can't be sure of any cognitive delays yet as he is only 8 months old and her hubby pipes up from the background..."Well, he doesn't look like a retard!"

"I think the most heartbreaking was when one of my very best friends asked me why I didn't have prenatal testing done so I could have terminated the pregnancy. Then I wouldn't have had to deal with all these problems. I couldn't wrap my mind around that. My child is such a blessing and has taught us so much."

So this husband is over with his wife and he asks me how my child is doing. I start to explain how much progress he has shown and the hubby says "So, he is just growing out of it?" That is not too bad...a common hypothesis for those not in our world...but then when I tell him that Sean is still not sitting up yet on his own, he says, "Well, if you just took him by the hands and walked him along the floor, he would probably just "get the picture" and do it!!!!" Why didn't I think of that....thanks for the tip guy with no kids and no clue!"

(From a mom whose son can not eat and has a feeding tube): "Someone I know was telling me how she could really understand what I was going through about Jacks feeding problems, because once her son decided he didn’t want to eat his oatmeal and how frustrating it was for her! Yeah I know, having to pour fruit loops in a bowl instead of his once favorite oatmeal is comparable to my son that doesn’t eat anything and had surgery to have a feeding tube inserted! What was she thinking??!!!! Yep, that’s the same as her picky eater."

 

"There was this couple that we used to be friends with. They were very religious, no t.v, computer, no outside medical treatment, etc. My husband is a baptist minister and we have t.v., obviously computer, etc. It was their opinion it was God punishing us for not living right."

Considering these comments, I have been very lucky not to have been faced with any such situation. (The worst thing I’ve faced is people calling Maddie a boy. I know her hair is short - but she always wears pink!) As I have said before, the moms in this Club are amazingly compassionate and, honestly, always seem to know exactly the right thing to say. People have told me before that they’re not quite sure what to say to me in regards to Madison. I’m still not quite sure what to say myself sometimes. There are no guidelines, but everyone just wants to be treated with kindness and respect. The above situations are obviously extreme, but they give you an idea of exactly what NOT to say!

 

 

 

 

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Go, Maddie, Go!