Month: December 2018

My son is getting stronger.

I had my son, who has special needs, late in life. I was 38 when he was born. In about six weeks he will be seven years old. I am now 45.

In my twenties I had more energy than I knew what to do with. In my thirties I was a little calmer, but still wanted to go out and do things. Now, in my mid forties, I have been on a crazy sleep schedule for years. My neurotypical daughter, almost 9 years old, didn’t sleep through the night until she was five years old. My son often sleeps through the night now, but we are off schedule on school break and as I write this it is 3:26 am. We have been up since 2:11. I have also gone through the loss of my mother since my children were born. And my husband has a long term illness that he is still recovering from. So, suffice to say, my health and wellness has not been a main focus for a long time. And, I have discovered that being in your forties is a whole different experience than the twenties and thirties.

My body is more sensitive to disruption. I have developed fibromyalgia. Getting snatches of sleep that equal eight hours doesn’t work for me. I am almost always tired.

In contrast to this, my son is growing. He is getting taller and heavier. He is stronger than ever. And I am starting to get hurt.

Ultimately, this is a game that I will lose. He will always be younger than me. He is projected to grow to the incredible height of 6’6. And, right now, he often communicates by tugging at my body. He pulls me.

My son is not trying to hurt me. He is trying to communicate.

At first, when I realized that it was going to become progressively more painful, I was reactive. I became incredibly worried. There was no way that I could keep up with him physically over time. Then I became proactive. Because I could see what was coming and it was going to be painful if I didn’t put some things in place to change it.

It is said that you must fill your own cup first. That the overflow is what goes to those around you. That if you take care of yourself first, you will be able to care for others better. I have been operating on the fact that being a special needs mommy means he comes first, always. I can see over time that this will backfire. So I am in the process of fixing it. I have realized that by taking care of myself first, I am actually still putting him first. He needs a strong, healthy mama.

Look, aging is not a choice. But self care is. You know how there can be two 75 year old people and one looks 50 and the other looks 100? A lot of that (not all, of course) can be attributed to self care.

I am approaching this problem from two different directions. You can do this, too.

First…

Wherever you are on your special needs journey, but ESPECIALLY if you are stuggling physically to keep up, stop and examine if you are taking care of your health. Check in with yourself.

Are you eating well?

Are you eating regular meals? Are you gulping and not chewing? When was the last time you ate something that grew that way? Like a potato instead of a processed chip?

Are you drinking enough water?

Coffee and energy drinks don’t count as water. They can actually dehydrate you. Pay attention to your water intake. It makes a huge difference in how your body functions.

Are you exercising?

No, chasing down your child for a diaper change doesn’t count. When was the last time you worked out? Or went for a walk? Yoga?

Are you doing some sort of strength training?

My son is getting bigger. It is getting tougher to physically do what I need to do, dressing him, changing diapers, helping him in and out of cars, etc. Is it getting harder for you? Strength train. Please start slowly and ask an expert for help if you don’t know how to do this. The last thing you need is to get hurt when you are caring for someone with special needs.

How is your mental health? Do you need extra support?

Exhausted? You are more vulnerable to depression. Anxious? What special needs parent isn’t? Seek out support. Parent support groups, therapy, whatever you need. Don’t know where to begin? Ask the school for referrals. Don’t worry about it being seen as a parenting weakness. They will admire you for having the strength to ask for help. Can’t leave the house for therapy and care for your child? You could even do it over the phone while your child watches the same 10 second clip of Dora the Explorer over and over. That’s not optimal but it sure beats nothing.

Second…

In addition to this introspection, examine what you can put into place with your child, NOW, to ward off being injured later when your child communicates by manipulating your body. Or, whatever they are doing that is starting to hurt. For example, my son likes to come up to me when I am sitting in my recliner to get me when he wants milk. He will reach out, take my hand and tug on it. It was completely adorable when he was two but now that he is almost seven, sometimes he twists my fingers really hard. Add in my fibromyalgia and it’s a recipe for pain. For the last several months, as my son is just becoming verbal, I have been modeling the words, “Come with me.” When he pulls on my hand, I take it back, look him in the eyes and do nothing. He tries to tug again. I wait him out. He tries to figure out why I am not moving. Then, as if I just figured out what he meant, I will ask him, “Do you want Come With Me?” He usually says, “Yeah.” “Oh,” I say, “You want come with me!” I say this in a sing song voice. This morning, he came up to me and said, “With me.” Without tugging. This is not an overnight event. We have been working on this for months. But, if I don’t put the time in now, when he is 14 and 20 and beyond, can you imagine what my potentially 6’6 son could do to my hand?

This may not work for your child. If they are not verbal, you can do this with PECS (picture exchange communication system). Have pictures available for your child to point to and practice using them. Ask for help to implement this from the speech therapist if you need to. You can also consult a behavior specialist for suggestions on what to replace behaviors with that have the potential to hurt others down the road.

Your issue could be completely different. But whatever the issue, the steps to solving it are the same. Try this out:

1. Identify the problem.
2. Imagine where it could lead to if it continues without intervention.
3. Imagine how you would like the situation to change. What would you like it to look and feel like when it is solved?
4. Come up with solutions.
5. Ask for help if you need it. You may need help creating the solutions or just implementing them.
6. Implement the solutions. Adjust as needed. If they don’t work, try something else.
7. This is key. PERSIST. Your first 2 or 5 or 20 solutions may not work but SOMETHING WILL.

It sounds simple when broken down into steps and these steps will help you focus. But, as you already know from living the special needs life, nothing is as simple as it appears. It is OK. It may take a while (months or even years) to solve, but you can do this.

If you see something coming down the road that has problem potential, be proactive now. Don’t wait until you get hurt. Use your resources to solve the problem.

And take care of yourself. YOU are the world to your child. Take care of your child’s world.

Sometimes it seems like I am forever fighting with people. My son, who is 6 years old and has special needs, has spent his life working with people from various programs. First it was ECI (Early Childhood Intervention). Then it was PPCD (Pre-School Program for Children with Disabilities). Concurrently, we also got services from an outside source for various therapies. And now, we are in public school at an all special needs campus, self-contained (which is exactly where my son should be). Along the way, there have been mostly incredible, talented and caring folks who wanted what was best for my son. But sometimes, what seems best for my son to these professionals is not what I or my husband think is best.

When you run into a situation with the school where you want more or different services than they seem willing to give, it is important to have a plan in place. You want to successfully persuade them to give you what you want. Sometimes this can be done in a “nice,” manner, which, let’s face it, is optimal. But, sometimes, when you can’t get everyone on board with what you want, you have to persuade them.

Tenacity for the Win

Tenacity is determination. It is persistence. In the teaching world, the buzz word for the last decade or so has been grit. This is the key to getting what you want. Having taught in general education for fifteen years before I became a stay-at-home mom, I learned a few things:

Take up their time.

There are not enough hours in the day for people employed by the school system. Teachers, diagnosticians, administration, counselors and therapists have a large caseload. They work 24/7. They dream about it. So they only have a certain amount of time allocated to considering giving you the change that you want. When you push this time boundary, they may give you what you want just so that they can move on. Be willing to spend as much time as it takes to convince them of the change that you want made.

Learn the law.

They generally assume that you don’t know the law. They may or may not be conscious of this assumption. So sometimes they will give reasons why they can’t give you what you want but those reasons are not legal. Additionally, they can get in trouble for giving these reasons. For example, if you want your child to have more time in speech or to have individualized speech, the therapist cannot legally say that the reason why they don’t want to do this is because their case load is too heavy and there is no time. If this is true, the district is legally required to hire another service provider. But if a parent doesn’t know this and they are told there is no time in the schedule, the parent will often back down. It is to your benefit to be knowledgable when it comes to special needs education law.

Cite research that supports what you want.

Schools LOVE to cite things that are research-based. It is to your benefit, when requesting something different than what is being provided, to bring along an article or two that supports your position. These articles are available on the internet. All you have to do is search for your topic. Extra points for fancy-sounding places that did the research like Ivy League Schools or well-known education organizations. You are not looking for a cool post on this topic from a random guy named Fred.

Take your own data.

Schools like to take data on students to show what is or is not working. You can take or keep your own data at home to present at the meeting. It is as simple as giving your child multiple chances on different days to show what they know. For example, if you feel that your child is not benefitting from how they are being taught sight words, you can, on five different occasions (perhaps once a week) present flash cards to your child and write down which ones they know and which ones they don’t. Keep this information. Then, if your child makes no progress, bring this data to the meeting. Explain that you took this data over five weeks, once a week and your child did not show any progress. Then explain what you want to be presented to your child instead of what the school is doing now. This data is evidence that what they are doing is not working. It is hard to argue with what a parent wants when there is proof that what the school is doing is not working.

Do not accept sub-par interactions for your child.

It is your right to request another provider if you feel that your child needs someone else. Depending on the setting, you may or may not be able to get someone else but it is always worth pursuing if the provider is sub-par. An example of this is a therapist that came to our home through ECI when my son was about two years old. She made no effort to connect with him in any way and her content delivery methods were mediocre. When my husband discussed this with her, she stated that it was not her job to love on my son, it was her job to model what to do for us so that we would deliver the actual therapy. My son did not want to work with this cold woman and cried the entire time. My husband showed her to the door and told her to never come back. We then called ECI, explained the situation and requested another therapist. The new therapist was stellar! She bonded with my son, loved on him and got more accomplished in one session than the other woman would have ever accomplished. Any teacher or therapist of value knows that if you cannot connect with the person you are working with, you will not be able to teach them anything. You have the right to ask for this. But you must speak up.

Be the advocate that your child needs. Speak up!

When I started telling people that my son has special needs, I often heard about how he could be a child prodigy! Perhaps he’d become a famous musician! A scientist! A mathematician!

No pressure.

The reality is that this is the exception rather than the rule. Most children with special needs will grow up to be adults with special needs. Average.

Just like, well, you.

So where is this idea coming from?

Well, there is Sheldon on the Big Bang Theory. He is an incredibly high achieving scientist. The Good Doctor. He has autism and is a savant surgeon! Einstein was said to have had special needs. If I hear again that my son will become verbal, because, well, look at Einstein, he didn’t talk until he was at least four, I may implode. Beethoven! He lost his hearing at 26 years old and is one of the greatest composers in history. Oh, wait, Marla Runyon! She is an Olympic Gold Medalist in running who is blind. Frida Kahlo, an incredible painter from Mexico, had polio at 6 years old, leaving one leg weaker than the other. Then she broke her back and spent the rest of her life in a cast but still painted! Does your child have this issue? They could be a painting prodigy!

Never mind that aside from these famous folks, there are millions of people in history who had special needs and led wonderful lives. “Average” lives.

When I hear these people chime in with these ideas, time and time again, it says very little about my son, who has special needs, but says a lot to me about them. I think that they are uncomfortable. I think that they need to comfort me in what they perceive as my loss, by telling me the possible upside. It makes me think that their experiences with folks with special needs are limited. That my son having special needs makes them uncomfortable.

There is a saying that I have heard repeatedly. It is that when you know one person with special needs, you know one person with special needs. It is a world that is so individualized that two people could have the exact same diagnosis and it could present itself so radically differently that you would never know it. I cannot base my son’s worth in life on what other folks with special needs have achieved. That would be like saying that I should have been a world-renowned gymnast like Nadia Comaneci because, look, we both have two arms and two legs!

I am not discounting my son. Far from it. He is a world of possibility. He has already displayed a wicked sense of humor. And, at the age of 6, I have realized that one of his amazing talents is that he is a spreader of joy. He makes people smile everywhere he goes. If he achieved nothing else in life, this would be an incredible contribution to the world. But I know that he will achieve more.

We need no comfort. My son, as he is, is enough.

It is 2:10 AM and my son is up for the day. For the second day in a row.

Yesterday was Christmas Day. My son, Kai, who is 6 years old and has special needs, was up for the day at 2:30 AM. This is day 2 for extra early rising. What does this mean for me as a special needs parent?

As you can imagine, exhaustion.

I paused to stare at the last sentence, glazed over, shook myself out of it and continued to type.

Yesterday, Kai’s dad got up with him but my sleep was still completely disrupted. I have been trying to do that self care thing that everyone (including me) is always talking about and this includes a daily walk for an hour. Yesterday’s walk qualified as more of a trudge. Have you heard about this new workout that is sweeping the nation for special needs parents? Take a daily trudge. It is self care. I think the joke that I have just made is funny. But I have slept very little. So, who knows?

The New Year is coming. It is time for those annual resolutions. I am a fan of them, and I do have plans for the New Year. I would like to tell you all about them. After I get some sleep. One day.

There is still a stack of presents on the floor near the Christmas tree. Kai does not enjoy opening presents and really has no use for any of them. He has very basic needs. His Dad and I have tried in the past to involve him on Christmas morning but he wants to be left alone and usually leaves the room with his tablet to relax in a quiet spot. Yesterday he stayed in the room but did not participate. We let him do his thing. Honestly, it was joyful to just be able to look over at him as our neurotypical daughter, age 8, enjoyed her bounty. Afterwards, I sat next to Kai and “helped” him open a book (which means I opened it while he ignored it). He was interested in looking at the book briefly but then took it from me and put it down. At bedtime last night I tried to read him the new book but he took it from me and replaced it with the same book we have been reading for months. Which, of course, I have memorized.

Ten Tiny Toes.

I just stared at that sentence, with foggy brain, for I don’t know how long. Breathed deeply. Continued to type.

This is what it is like. I am sitting here in the middle of the night (early morning?) drinking coffee while Kai rocks in his dad’s rocker recliner which is pretty close to being destroyed from all of the action it gets. I am already thinking about my next nap. And the fact that I need to do another daily trudge. Later today. After the sun comes up.

I imagine all of the special needs parents that are up at this hour. Doing what I am doing. We sometimes feel alone, isolated. It is just us and our children and the darkness of the early morning hour. But we are doing it at the same time. Just in different places.

I just glanced over at my son, vigorously rocking, with the sweetest smile on his beautiful face. I know that this is exactly what I am supposed to be doing.

I try to focus on that smile during the daily trudge.

One of my all time favorite songs is Right Now by Van Halen. It says,

Right Now
Hey… Is Your Tomorrow
Right Now
Come On, It’s Everything
Right Now
Catch That Magic Moment and Do It Right Here and Now
It Means Everything

Whatever you feel guilty about, let it go. Whatever ball you have dropped, just bend down and pick it up. Do what you can do. Right here and now.

Whatever you have put off, do it now. Whatever you know you should deal with but you have been dragging your feet, get it over with so you can stop thinking about it. Lets turn this thing around. Right now.

Did you start working with your child on something and then kind of let it go? We all do that. Life gets in the way. Hey, sometimes you JUST DON’T WANT TO, you are tired of going full throttle. I get it. We’ve all been there. Special needs parenting is 24/7/365. Take your break. But then, pick it back up. Keep going. You can do this.

It’s not about perfection. It’s about showing up.

Persistence and consistence beats resistance.

For your special needs child, for you, it means everything.

It goes back 28 years but the message is still fresh. Listen and get reenergized:

If you missed my last post, my son, who is special needs, left the house on his own for the first time. This was a terrifying experience for our family. Take a look at the post to catch up:

My Special Needs Son Left The House Today

We are far from alone. It is said that about half of all autistic kids will elope at some point in time (elope meaning take off, not getting married). Extra scary was the fact that we are up the hill from a lake that would have taken two minutes for my son to walk to and about a ten second walk from the road.

Now that the dust has settled, breathing has recommenced. That, and the ever present push to plan ahead. Because when you are living the special needs life, you need to try to envision what’s coming next. You need to be several steps ahead, if at all possible. Hypervigilance is an exhausting but necessary state of mind.

I knew that it was important for me to remember that this has happened before for other families. Why reinvent the wheel when I can investigate what other families have done to prevent this scary occurence from happening again? So, off to the internet to search for solutions I went.

I found this wonderful article that absolutely refuses to let me give you a link to it. So here is the URL: https://veryspecialtales.com/prevent-autistic-child-wandering/ If you highlight it, copy it and paste it into your search bar, you’ll get there. Don’t miss this incredible resource!

I am so grateful for this article. Thirty ideas to take, make your own and apply to your unique situation! I wasn’t sure where to start, so this gave me a place to begin.

After discussing it with my husband, we both agreed that number 29 spoke to us. It states, “If possible, identify elopement reasons and try to address them.” We know why he went out. He wanted to jump on the trampoline, which he loves. In fact, he spent the rest of the evening after the escape trying to drag me out the door to go back to it. It is hard to bake with a child attached to your leg and yanking on you! We know that until we get the money to fence in the whole play area, he can’t go out there by himself (I miss having a completely enclosed backyard!). So we have decided to do the next best thing. We are going to buy a trampoline and put it in the house.

We have only 1600 square feet. Last year we decided to downsize when we moved to the country and it is much easier to take care of our new home than our former 2700 square feet. This is going to be tight. But choosing between bringing in what he wants from the outside or dealing with elopement and endless fussiness, for us, is a no brainer. And we are not buying one of those minis with the handles. Five feet and up to 220 pounds with a net around the top and bottom is the way to go for us.

By removing the reason why he left the house, we are hopeful that we won’t have to deal with this again for a long time. But we know that eventually, we WILL have to deal with it again. Every time you think you have things under control, the game changes.

In addition to the trampoline we also had a family meeting. We discussed the procedure for locking all of the locks each and every time we go in or out. We added extra locks that my son can’t yet manipulate. But eventually, he will figure it out. He’s really smart. I’m also still thinking about the service dog on the list. I am hesitant because I have been changing diapers for almost nine years so more poop management is not appealing. But, maybe we’ll do it anyway.

And… I’m breathing again. For now.

My son left the house today. With all of the things we have in place to keep him safe, we failed. We have toddler doorknob covers on all of the interior doors. We have a refrigerator lock. We have a playpen, which we call the apartment, where he spends his safe time. Come to think of it, I need to buy another one, because I bought it for his infant niece.

My son is six years old, special needs, low functioning. But definitely mobile.

I decided to go for a walk today, to do some of that self care we are always being told we should do. I was gone an hour. We live in the country, so I went around the lake to a far point and back. I was coming up the hill and around the curve, when I heard him. My son was making his noises and I heard him about 1/2 a block away. I thought, how nice, his Daddy took him outside to play on the trampoline. But when I walked up the driveway, my son was on the trampoline by himself. The side door was open. And no one else was in sight.

I yelled for his dad. No answer. I swept into the house, screaming his name. No answer. Until I got to the living room. And found his dad taking off his headphones, sitting with his computer asking what was wrong. I kind of flipped out.

We finally figured out that his sister had come in the door earlier and shut it but didn’t lock it. And Dad, thinking everything was locked up tight and our son could safely wander about the areas he was allowed to wander in the house, decided to watch a show on his computer.

We live up a hill from a lake. It would have taken my son two minutes to go down the hill and into the water. It would have taken him mere seconds to walk out to the road in front of our house. Instead, thank God, he was just sitting inside the trampoline netting, babbling contentedly to himself.

This is living the special needs life. Just when you think you’ve got it all figured out, it throws you another curve ball. Now there is a flip lock on the side door as an extra precaution. But my neurotypical daughter, who left the door unlocked, is eight. She made a mistake. And, the reality is, any one of us could make a mistake again.

The flip lock doesn’t lock itself.

My son, after being allowed to jump on the trampoline for a long time, came back in with me. But for the next two hours he kept trying to drag me to the door to go again, even though we’ve already gone twice today and I need to take care of some other things. He yanks my body, pulls me, tantrums when I refuse. While I bake a holiday cake, he is stuck to my legs. While I stir, I am off balance.

Most days are not like this for us. But I know, for so many special needs families, EVERY day is like this and worse.

I am exhausted and yet need to be MORE. More hypervigilant, 24/7. More patient. More willing to spend hour upon hour sitting out by the trampoline, which makes my son so happy.

Don’t get me wrong, I want my son to be happy. But I also need to use the bathroom.

They say that a special needs caregiver experiences stress on the level of someone who has been in combat. I don’t know. I have never been in combat. But my stress level is through the roof right now. I need to do some self care. But, earlier today, when I tried to take care of me, my son left the house.

I recently saw in the news that a young autistic man is lost at sea, having gone overboard while on a cruise. His family thinks that he saw the water and probably wanted to go swimming. My heart aches.

I wait for the day when my son decides to go swimming with dread. Or decides to do anything outside what we usually do, by himself.

I hope we are hypervigilant enough.

Want to know what we did after the dust settled? Check out part two of this article here:

My Special Needs Son Eloped For The First Time – Now What? (Part 2)

Dear Special Needs Mom,

I saw you today. We were both at the class party for our sons. Since our whole campus is special needs, there is a huge range of what is “normal,” behavior. And I know that all of us special needs parents are used to having the “different,” child in social situations. But this was in our sons’ class. EVERY student was special needs. All of the kids were seated in small chairs at carpet watching the morning meeting videos while the parents sat with them. All of the students were in good moods. Yes, there were a lot of interesting behaviors going on (rocking, tapping, noise making) but they were feeling festive. My own son was grinning from ear to ear that his Mom, Dad and sister were there.

But not your son. Your son was crying. He had his chewelry in his mouth and he was at times bawling. He went back and forth between rocking in his chair and putting his head in your lap. The class wasn’t doing what they normally did. There were lots of extra people there. And your son was not ok with that.

I saw you. I saw you trying to comfort him. I saw your embarrassed look. You looked like you were thinking, wow, even in THIS environment, he wasn’t doing it like the other kids. Like you could have really used a break. Like, COME ON.

I saw you. I saw when the principal came over and tried to soothe him with you. And it didn’t work. And then it appeared that she offered you a quiet place to go. Maybe you were off to the sensory room. Maybe you were going home. But you weren’t staying for the party.

I saw you. And I wanted to go meet you and give you a hug. I wanted to tell you what a wonderful job you were doing. That if your son felt overwhelmed and off schedule, all he was doing was letting everyone know the only way he knew how. I wanted to tell you that we have all been there. And that there was no reason for you to be embarrassed. The number one thing, the most important thing, was the comfort of your son. After you left, Santa came. We all helped our children to interact with him. He brought presents. There was even more noise, even more color (Santa’s bright red suit, colorful presents). Your son would have hated it.

I saw you. And I am proud of you. You are doing it, Mama. And if your son isn’t ready for a class party this year, next year or ever, it doesn’t matter. Not at all.

Love,
Another Special Needs Mom

When I was in college way back in the nineties, I discovered a wonderful field of study that I later ended up majoring in. My major was Human Communications. Unlike regular Communications, which is the study of media, newspaper, television and internet, Human Communications is, simply, the study of how humans communicate. My classes included topics such as family communication, communication in the workplace, conversational patterns, learning communication from birth through family interaction and more.

I learned a very valuable lesson while studying this that has stuck with me throughout the years. And that is, it is the communicator’s job to get their point across. If you are the one trying to express something and the other person isn’t getting what you mean, YOU have the responsibility to change the way you communicate it until understanding is reached.

Conversational Power

Conversational Power is the ability to hold your partner’s attention to get your point across in an effective manner. You draw them in. You communicate what you want them to know in a way that they can understand. This very basic concept is a lot harder to execute than you would think. If you want to be able to get your point across, you need to consider the other person. What level of vocabulary do they possess? What is their education level on a topic? How much attention span do they have? What are their preferred word choices? What is their age (because, as you’ll see below, different words mean different things to different age groups)?

And this interesting fact – if you use a term that they find offensive, the likelihood that you are going to get your point across diminishes. The same holds true if they offend you. If they choose words that anger you, you are less likely to listen to the rest of what they have to say.

With the current political climate, there is a huge portion of the population that is working to be sensitive to everyone when talking about anything. The other part of the population is impatient with this, wanting people to be less sensitive, not wanting to change.

It is to your advantage to use vocabulary that is seen as socially acceptable in the special needs world.

I recently read an article where the author, who works in the special needs field, insists that the original meaning of retarded still holds. She defines “retarded,” as less advanced, in mental, physical or social development than is usual for one’s age. This certainly describes my son right now. If we were in the 1960’s, this would have been an acceptable description.

The problem arises when it is not taken into consideration that language morphs and changes over time. The word retarded has become a taunt, a put down. And so, even if the clinical meaning had a completely different connotation, as time has progressed, the word is understood in general society to mean something different. The writer of this article, a woman in her thirties, insists upon using the word currently, because to her, it describes students that have delays.

While I understand her position, as a communicator in our current climate, her use of this word diminishes her conversational power. Anyone she currently communicates with is living in a culture that frowns upon using this term. Using this word is currently perceived as a slur, a negative, a put down. Any value she could share conversationally therefore becomes negatively outshined by the offensive term. Intention in conversation is important. This woman has good intentions. But, unless you know her really well, well enough to know her stance on using the term, it is a huge conversational red flag. A distractor.

Language is not static; it changes over time

Language is fluid. Its use changes over time. In my lifetime, using the “N” word has gone from a horrible put down to a casual way of calling someone a friend. I am so shocked by the term, having grown up in the 70s-90s, that I can’t even type it here in its entirety, while the 20-somethings currently toss it around like it’s no big deal. Because to them, it isn’t. If you think about who your audience is and what has been and is acceptable in their lifetime when holding a conversation, you may choose different words to get your point across. I know that for myself, if someone referred to me as their “N,” I would be highly offended and the conversation would most likely go south in a hurry. Not so for my adult stepchildren in their twenties.

You may have already noticed that different generations have different cultural norms when it comes to words used to describe special needs folks. What words do you know, whether you would use them or not? I started a list of words that I could think of and the rest are listed as synonyms of the term “special needs,” when I looked this up online. Look at this list and as you read each word, try to examine the feeling the word illicits in you. How do you respond when you hear these words?

special,  special needs, enabled, differently abled, angels, retarded, retard, disabled, handicapped, defective, impaired, afflicted, stupid, incapacitated, MHMR, slow, abnormal, intellectually disabled, disabled person, person with a disability, autistic

Some of these words may strike you as acceptable and right. Some of the other words may illicit in you a feeling of anger, disgust or annoyance. Again, they are, all of them, technically synonyms of the term “special needs.” But that doesn’t mean you should use some of them. Connotation is everything when choosing the right term for your conversation.

If you are the communicator and you need to get your point across to someone, do you think that using describing words that are generally known as offensive in our culture, even though you may not mean them that way, will help or hurt your cause? What those terms become are DISTRACTORS. Even if what you have to share is amazing, useful information, it will be immediately overshadowed by a term that the person you are trying to communicate with deems offensive, rude, insensitive.

Conversational Edge

To take this a step further, don’t just avoid words that may be perceived as offensive or upsetting. You can give yourself even more conversational power when you accept and utilize words that appeal to your conversational partner. This gives you what I like to call conversational edge. If it grates on your conversation partner’s nerves when they hear “special needs child,” instead of “child with special needs,” it is to your advantage to hear them out regarding why they feel that way. Then, use that term in your conversation. It allows your partner to feel heard and stokes your conversational edge. Because your partner has been listened to and their feelings are being honored with word choice that they prefer, you are much more likely to be heard.

Why is this important?

You will find yourself over time, as a special needs caregiver, in a variety of situations where emotions are running high. Having conversational power and conversational edge swings situations in your favor. Or, at the very least, makes it more likely that you will be heard in entirety. Think about IEP meetings. You may want a service that is not usually offered. While making your case, you don’t want people on the committee to shut down in the middle because you used a word like retarded. Think about family social situations. Or parent-teacher conferences. How can you apply this successfully? By being able to communicate clearly, using vocabulary that doesn’t offend, you can be more convincing to get people on board.

And, finally, for those holdouts. The ones who think that special needs folks are “less than.” Mediocre. They are almost certainly going to use words that rankle. Keep your conversational power. Correct them but don’t fall into the trap. If you can’t continue the conversation, if you get caught up in your anger, you will not be able to educate them. Your conversational power is gone. Instead, model for them the words that are respectful by using them in conversation. If they call you a “snowflake,” if they claim that you are too sensitive, think about how this makes you feel. Are you willing to listen to them or did you just shut down? Exactly. Use this conversation as a reinforcer for yourself about why word choice is so important. Ultimately, you can’t control what other people do or say. You can only control what you do or say. Keep your power. Keep your edge.

You are powerful. You are a voice for your child. Use your voice.

I just read an article about how to keep yourself from crying at an IEP meeting. The writer seems to think that crying is OK, but not during the meeting. That you need to buck up. That you need to be strong to focus on advocating for your child. The crying can come later.

I was a teacher for fifteen years in general education. I have sat through hundreds of IEP meetings as the general education teacher. Then, after I became a Mom to a beautiful little boy with special needs, I sat on the other side of the table as a parent. I also became special ed. certified. I have the unique perspective of having sat on both sides of that table. Let me tell you a little about what I have seen from both perspectives.

We teachers and specialists know that what we are discussing is highly emotionally charged for you. In fact, we find it alarming when it isn’t. I do not ever recall talking about a parent that cried at a meeting in any other way than with sympathy and respect, after it was over. But, I do recall discussing why a parent seemed so cold and removed when it was their child’s welfare that we were talking about.

As an educator, let me remind you that your meeting is not our first rodeo. We have seen hundreds (especially more seasoned teachers) of parents through those meeting doors. We have tissues and we have chocolate (in most cases). We know how invested you are in your child because WE are invested in your child. It isn’t totally out of the question for some of us to cry with you. When you are around, it is “your” kid. When you aren’t around, guess what? We say that they are “our kids.”

When I sit on the parent side of that table, I know that everyone there brings their expertise to create a plan for the best outcome possible. Don’t feel intimidated by this. YOU also bring your expertise. You are the expert on your child. No matter how much education others have, NO ONE in that room knows your child like you do.

This is why the IEP meeting is a TEAM MEETING. You are the most important member of the team. In fact, you are so important, that the meeting cannot be held without you.

YOU are the advocate for your child. Crying does not make it less likely to get what you want when the team doesn’t agree with you. Do your research if you are requesting something that they may not want to give. Don’t be afraid to speak up when they are making a plan and you think the plan should be different.

This is not a board meeting. This is your child’s life.

Cry in strength if you need to. And don’t forget to ask for the tissues and chocolate.