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:
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.
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.
Travel can sometimes be a struggle for special needs folks and their families. We are still trying to decide what stroller to get our son, who has outsized regular strollers but still needs a safe place when out and about. So I spend a lot of time looking at all different kinds of travel options. That’s how I came across this.
While not the right type of thing for our son, I couldn’t help but think that this Lightweight Wheelchair for travel has so much to offer the right person. The fact that it is portable, folds easily for the trunk or storing and weighs only 50 lbs. gives it versatility. The chair can support up to 265lbs and its Lithium Ion battery can go for fifteen miles.
The current price is $1,995. While initially that seems steep, if you shop around you will see that it is a competitive price. It has great reviews.
I hope that this post finds someone who is the perfect match!
I am an Amazon Affiliate. If you purchase this product through the link above I may receive a small commission which in no way affects your price. This helps me to continue to support and share information with special needs families while staying at home with my son. Whether you choose to purchase or not, thank you so much for your support!
When caring for your special needs (or typical) child, often a power struggle can ensue. Children want and need to feel in control. This feeling grows as they get older. However, children also need boundaries that are set by their parents to feel safe. So what should you do when the struggle gets real?
As a parent, you can rate situations based on what is most important. It is not a choice for a child to do something where they can get hurt or hurt others. Those things are non-negotiable. You may find that you also have other situations that are non-negotiable for you. Keeping tight control on these things is important. But what about the things that aren’t so important?
Maybe you don’t feel as strongly about what your child is going to eat for dinner. Or what they are going to wear that day. These are places where you can present choices to your child that gives them a sense of being in control of their lives.
My son, Kai, who is special needs and mostly non-verbal, has his preferences. We have had a long road in relation to feeding. At the age of 6, we have worked up to 3rd stage baby food (a bit chunky but still a puree) for dinner and, also, canned pastas such as Spaghetti-Os, Mini Ravioli and similar products. Yes, I would like for him to eat healthier but we have made huge strides in this area over time and eventually, we will get there. Until then, these are his dinner choices. I absolutely could just pick one of these foods and serve it to him. But, since either choice is acceptable to me, I let him choose. If I were to ask him, “What would you like to eat for dinner?” he wouldn’t respond. But if I tell him it’s “eat time,” and we walk to the cabinet together, he opens the door himself. He can either choose from what’s there and hand it to me, or I can hold up two choices and he will push one away and pull the other one toward him. Then I say to him, “Kai, do you want chicken for dinner?” This is the chicken baby food puree. Kai will usually say, “Yeah.” And I serve it to him.
Why does this matter? It lessens the power struggles. It gives him a sense of control over his life.
There is a trick to this, though. I have seen people try to give choices and the biggest mistake that I see, over and over, is that parents will offer choices when they really want the child to pick a certain one. So if the child picks the other one, the parent will then try to talk them out of it.
For example: You don’t feel like making frozen pizza in the oven. You are exhausted and this takes up to 30 minutes. You really just want to microwave chicken nuggets (some people find microwaved chicken nuggets gross but some kids will only eat them prepared this way). But you know that you should give your child choices to make them feel independent. So you offer them a choice for dinner – pizza or chicken nuggets? You are hoping and praying that they pick the chicken. Your child picks the pizza. Now you are stuck doing the thing that you didn’t want to do. So you try to talk them out of it. You say things like, “You don’t REALLY want the pizza, do you? You LOVE chicken nuggets!” A power struggle then ensues, the very thing you were working on avoiding. Because it wasn’t a REAL choice to pick pizza.
What’s the trick to avoiding the choice power struggle? ONLY OFFER CHOICES THAT YOU ARE OK WITH. If you aren’t making pizza tonight, don’t offer it as a pretend choice in the hopes that your child will choose the other one. This is a very common mistake. When offering choices (and there can, of course, be more than two) pick only choices that are all OK with you.
When you offer choices that are all OK with you, it’s a win-win for you and your child. You are really the one controlling what is happening, your child feels like they have some power and control in their lives and the struggles ease.
Try this! You can give choices in activities, clothing, seat choice, read-aloud books, toys, games, shower or bath, exercise, outdoor activities and more. Do you have several therapy activities to work on at home? Try to incorporate choices here too. It probably doesn’t matter which puzzle you do for fine motor practice if the puzzle style is similar (but if you need the pegs for grasping, offer choices that all have pegs). So let your child choose between the Mickey Mouse or the PJ Masks puzzle. Just MAKE SURE THE CHOICES YOU GIVE ARE ALL OK WITH YOU – and don’t offer something if you don’t want to give it.
How do you give your special needs child a feeling of control?
Sometimes the day with your special needs child (or a typical child) can start off on the wrong foot. It may be you or it may be them. Everyone has bad days.
But what do you do when one or both of you can’t seem to get out of a bad mood? You wake up, something happens, perhaps a meltdown or a tantrum, and you feel stuck. You or your child or both of you are cranky. Your interactions are edgy. Maybe you are snapping at each other. It is so hard to break out of this when the day starts this way. It becomes a pattern.
Here is a quick trick that I have learned that helps. It requires nothing to purchase, nothing to prepare and it is always there when you need it.
Do a do over. Remember when you were a kid and you would play a game with a friend and something went wrong? Do over. You would decide together that it didn’t count. You can do a do over for your entire morning. Or just your latest interaction.
If your child is capable of a discussion, even on the simplest level, this is a strategy to have in your tool belt. It maps out a plan for you both to be led in a different direction than the cranky path that you are on. If not, tuck it away for later, if and when your child advances to this stage. It is powerful.
Sit your child down and explain that you aren’t happy with how the morning (or the interaction, or whatever applies for you) went. You want to start over. Pretend that it didn’t happen. You want a do over. See what your child thinks about this. A lot of times, they will feel a sense of relief and will agree immediately. They know it went badly, they know that perhaps you are not happy with them. They wish the whole thing could just go away.
It can! Do a do over.
You could even have your child go back to bed and pretend to sleep so that you can wake him or her up again, as if for the first time. I was surprised to find out that this technique not only helped get my child out of a bad mood after a negative event, it helped me break out of mine.
Be careful not to do a do over if your child needs to have consequences for their behavior. If they became violent or destructive, that is NOT the time to do a do over. Also, before you have the do over, make sure that your child understands that the behavior is not to be repeated. You are starting the time period over, not telling them it is OK to do it again.
By the way, if you are a teacher, this also works in the classroom. Again, if the child is able to participate and understand the concept.
I am so grateful to know about and be able to use this strategy. It is incredibly helpful.
What strategies have you used to help ease yourself or your special needs child out of a bad mood? Please share in the comments below.
My son, Kai, is six years old and lets just say that he can be an ornery learner. Or, maybe we can call it “fussy.” Kai has special needs. He has PVL (periventricular leukomalacia), Autism, Duplicate Chromosome 16, SPD and more.
I was a general education teacher for fifteen years before I became a stay at home mom. After I started staying home, I took the test to become certified in special education as well. I just thought it would be a good thing to have in my back pocket. Can’t hurt, might help. So I am dual certified. I spent a lot of time teaching pre-K, which I loved, as well as Kindergarten through second grade.
So when it was time to teach Kai his letters and sounds, I had a lot of strategies at my fingertips. I found, after a huge amount of trial and error, that Kai learns best in the bathtub. There is something about being immersed in water, in the bathroom with little to no distraction and one on one time with me that helps him to focus. I found a big plastic bowl and purchased foam letters from the store. Uppercase was easy to find. Lowercase was nowhere to be found. In fact, I had to track it down online. This was in 2016 and I just looked to see if it was still available and it isn’t. It was the Munchkin Sea and Learn Bathtub Letters in lowercase. I have them. I just spent an hour trying to track down lowercase for you too, to no avail. Here’s hoping they bring them back. As an alternative you could make your own lowercase foam letters or use foam magnetic ones. Not sure what this would do to the magnetic part. I will update this post as soon as I can find lowercase letters.
Why am I so interested in lowercase letters, anyway? It is interesting to me that people usually seem to start teaching their children uppercase first, when the majority of letters that we see when we are reading are lowercase. Lowercase is also introduced first in the Montessori method, which is a very hands-on, individualized learning approach. I believe that it is better to start with lowercase but don’t freak out if you already started on uppercase. There are lots of ways to teach letters correctly, this is just my preference. You could also start teaching the sounds first, but I didn’t. Nothing wrong with that approach either.
PVL means that Kai has damaged white brain matter. He IS able to learn but he needs extensive training in the simplest things to master them. Kai was three years old at the time we began and I knew that he needed a ton of repetition to learn his letters and sounds, so I was determined to start early. I would dump all of the uppercase and lowercase letters into the tub (which thrilled him with all of their bright colors) and set the big plastic bowl floating on top of the water. Then, one by one, I would pick up the letters, in any order and show them to him. I would tell him the name of the letter. I would not ask him to repeat what I said. All he had to do was observe. And then I would put the letter in the bowl while saying, “Put in.” And then repeat. “C. Put in. L. Put in.” Kai didn’t know how to put in yet, so this was a good way for him to learn that task as well. After a while, I would show him the letter, tell him the name and hand it to him. I would say, “Put in.” Then I would guide his hand and help him to drop the letter into the bowl.
We would keep going until he seemed to tire of it or my back was getting too sore from bending over. Then I would sing a clean up song and put all of the letters into the bowl. I’d give Kai a round of applause. And then we would start the cleaning him part of the bath.
We did this consistently, every day for A YEAR AND A HALF (except on the odd night when we would skip bath). This is what happened over time. One day, I held up a letter and Kai TOLD ME the name of it (the joy was immeasureable). Then he began to “put in,” by himself. Then, when I would sing the clean up song, he started to grab handfuls to put in the bowl to clean up. Eventually, we moved on. I would hold up the letter and say, “Kai, what letter is this?” And he would tell me. He still had pronunciation problems with letters like X but he was consistent in the way that he pronounced them every time. So, he knew them.
Kai now had all of his letter names for uppercase and lowercase. It was time to move to sounds. So, I went back to my earlier method. I started by holding up the letter and saying, “Kai, what letter is this?” Kai would tell me. I would say, “Yes, you’re right, it is the letter D and it makes the sound “D.” And we would just continue on, every day doing it that way until I was able to ask Kai, “What letter is this? What sound does it make?” And he could tell me. At this stage Kai was almost totally nonverbal otherwise. He began to be able to say the names and sounds of the letters due to the massive amount of repetition he was receiving. This won’t happen with every child but – and this is key – don’t think that if you don’t hear them say the letter name and sound that they don’t know it. JUST BECAUSE THEY CAN’T TELL YOU DOESN’T MEAN THAT THEY DON’T KNOW.
Learning the letter sounds took probably an additional year. So, in two and a half years, with massive amounts of repetition, Kai was able to learn his letters and sounds.
It seems like a long time, doesn’t it? Here’s the thing. The time goes by whether you are doing it or not. Two years of doing nothing ends in two years. Two years of doing something also ends in two years. The big difference is that there is a reward, an accomplishment, at the end.
I want Kai to become a reader. It may take 10-15 years for him to read even the simplest of books. And if it never happens, he will read in a different way. There are books on tape, books on video. We’ll see. The next step for him is sight words. It is definitely going to be a challenge but the reward is so sweet, how could I not?
What would you like your child to be able to do in two years or five years or ten years?
The wonderful thing about school vacations is that you get to spend extra time with your child. The downside to this is that some students with special needs will backslide in their educational achievements without the daily reinforcement.
Creating a daily work time at home has several uses. The first is that it can help you give structure to the day. In addition to play time, relaxation time, book time, t.v. time, snack time, etc., you can also have work time. The second use is that it gives you a chance to practice “first, then,” statements with your child, which teaches them to put off instant gratification (the activity they really want) to do important work first (which they may not be so excited about). And, lastly, daily work time at home can be a quick reinforcer to make sure that your child doesn’t forget what they have worked so hard to achieve.
If you are a person that uses a daily schedule at home, you can place “work time” on your visual list for your child. If that is too general, you can place several mini activities on the schedule, such as counting time, puzzle time, writing time or whatever it is that you are working on. If you are more of a fly by the seat of your pants, let’s see how the day goes household, you can just verbally introduce work time when you are ready.
Both of these styles benefit from using the “first, then,” method. Introduce the activity and if the child fusses, state, “FIRST, we are going to do X activity, THEN you can do Y activity (the child’s preferred activity).” For more information on using this method, plus a choice board and stop/go visual, look here:
What knowledge are you going to reinforce? There are several ways to decide. If you know what your child’s weak areas are, go for those. If you aren’t sure, take a look at the IEP. Still not sure? Send a note to the teacher before break, asking them to choose 3-5 things to review over the break to prevent a backslide. You can also ask for activity suggestions.
It is very important to note that you will not be able to cover everything in every area. Trying to attempt this can backfire on you as the child may feel overwhelmed. Keep it light, quick and simple. Make sure you are going by what is on the IEP at the level of your child! Here are some examples but they are JUST EXAMPLES (remember, do what your child needs):
Occupational Therapy Tasks – do a puzzle, string some beads, push pegs into a peg board, feed a piggy bank some extra large coins, writing, glueing, moving small objects with large tweezers
Fussy child? Shorten the activity. Do 3-5 pieces and then stop. Or, offer an alternative that addresses the same skill.
Physical Therapy – walk a line on the floor (put down tape), jump on a trampoline if you have one, throw and catch a ball, roll a ball back and forth on the floor, kick a ball, climb a ladder at the park and then slide down.
Fussy child? Add music!
Speech – Read a familiar story to your child and pause for the last word, allowing your child to fill in the word; rhyming; songs; yes/no question cards (Look at this picture. Is it pizza? Yes or no?). Have a nonverbal child? Set up an area with pictures of common things that they may want and when they try to get you to give them the item, bring them to the pictures. See if they can point to what they want (hand over hand pointing counts!)
Fussy child? Sing!
Sensory – This category appeals to the five senses – seeing, hearing, touching, tasting and smelling. You can often combine this with Occupational Therapy (fine motor) tasks. Wonderful sensory activities to try at home include playdough (scented is great!), slime, flubber, blowing bubbles, and fingerpaint (edible, for those that will put it in their mouths – Cool Whip mixed with food coloring).
Fussy child? If your child doesn’t want to touch these things, put paint in a ziplock bag and let them squeeze it or tape the bag to a table and let them write with a finger. Use a craft stick or paintbrush instead of fingers. Think of objects that they can use to make contact with the substance instead of their hands. It counts!
How do you deliver content (teach stuff) as a parent at home? It depends on your child. As a teacher for fifteen years, I have learned that sometimes the best approach is to get into the lesson, deliver the content and get out. Rapidly. If your child has a short attention span, this is your best method. My son is currently going through a phase where he doesn’t want to do table work AT ALL. We will try working on the floor, working in a rocking recliner, working in the bathtub, outside, whatever it takes. Because what you are going to cover is a REVIEW, it doesn’t have to be in depth. Here are a few more things to remember:
Have a plan, but don’t be afraid to alter it. If you want your child to do a puzzle and they are resisting, doing just a few pieces is better than doing nothing. If you decide that 2:00 is work time but they are happily engaged in another activity or they are resting, again, be flexible. Just DO SOMETHING.
Use teachable moments. If a commercial comes on when watching television that uses rhyming and you are working on rhyming, jump right in! Point out that they are rhyming and initiate a simple rhyme game (ex: They are rhyming! We do that too! Hey, here are two words – cat, hat. Do they rhyme?) Guess what? If that was one of your goals and you can engage your child for a few minutes in this, you have covered it for the day! Too hard or child non-verbal? Give the answers. Listen while I say two words that rhyme! Cat, hat. They rhyme! Pig, school. Nope, those don’t rhyme!
Love on your child. Our son does so much better if we take a few minutes to play with him and love on him before we initiate a work period. If your child likes affection, try kisses, hugs, backrubs, whatever you enjoy together, BEFORE, DURING and AFTER your work.
Remember that sometimes your child will “forget” what they knew before. This is called the pendulum process. Two steps forward, one step back. EVERY child, typical or atypical, experiences this at times. Some days they have it, some days they don’t. If you are working on naming colors and yesterday your child said, “red,” and today, they have no idea that the color is red, just gently remind them. If they “forget,” for longer periods of time, say a week or more with gentle reminders, bring it up with the teacher upon return to school. Daily fluctuations are NORMAL. Don’t worry about it.
Enjoy your child’s school break!
I would love to hear what activities you do to maintain what your child has learned during a school break!
For years, I have thought about a student that was in my class because of his unusual ability to read aloud. He would read aloud speedy fast. About 140 words per minute at the beginning of the year (the average first grader should be able to read about 90 words per minute by the END of the school year). His reading was flawless. He was also an ESL student, his first language being Spanish.
But then, we would get to the comprehension questions.
“What is this book about?” I asked him.
“My uncle has a dog,” he would respond.
The story was about ice cream.
My student, a generally happy-go-lucky kid, was unable to answer a single question about the story that he had just read aloud without a mistake. He couldn’t tell me who the characters were in the story, even when I explained what a character was. He couldn’t tell me the setting (the ice cream shop). Or anything else. But he didn’t just not know the answers, he would give responses that were wildly off the topic.
I thought maybe it was because of his ESL status that he didn’t understand, but truthfully, I was stumped. I had never seen anything like it before or to this day.
Had I been more familiar with hyperlexia, I would have seen a huge, red flag. This was a student who should have been referred to be screened for it. But I had no idea what hyperlexia was. It was just different than what I was used to seeing.
I missed it. That is a hard thing for a teacher to admit. But I did.
So, what is hyperlexia? The term was coined in 1967 by Silberberg and Silberberg. They discovered that a hyperlexic child has an unusual ability to read words way above average for their age at a very young age. This is very surprising (and is probably why I still remember my student to this very day) when compared to the child’s peers. There is a link to autism but experts do not agree what percentage of hyperlexics are probably autistic. Some people say that these children are very good at “decoding” language but other sources say that they learn to read from a whole language perspective. Thus, when they get to a word that they don’t know, they don’t have the skills to figure out how to pronounce it. But the debate continues.
Hyperlexia sounds dreamy – what parent wouldn’t want their child to be “supereaders?” Unfortunately, it is paired with extreme difficulty in comprehension. They often cannot retell what they have just read at all and have little to no comprehension. This is very difficult to address and requires strategies such as going back to very simple passages beneath the child’s reading rate to teach them how to understand what they are reading. The child often feels as though the simple passages are “babyish,” and may struggle with this as well as trying to comprehend.
At the time that my student and I met, I probably had a good ten years of teaching in general education under my belt. General education teachers are taught very basic things about special needs and often, something like hyperlexia is just a paragraph in a textbook during our training. What general education teachers excel at over time is the ability to notice red flags. When a student “looks different,” compared to the hundreds of other children we see, day in and day out, a “red flag,” is raised. It is a sign to pause and examine why. To question. But, a lot of times, the general education teacher doesn’t know what’s wrong. They just know things look “different.” And so, it becomes a puzzle to solve.
This is a time for the teacher to ask a specialist, visit with the diagnostician, send home a note to parents or ask for meetings. I was usually in the thick of this process with multiple students at a time. I believed that no one would fall through the cracks on my watch.
I missed this one.
Maybe he wasn’t hyperlexic. It is possible that the comprehension was slowed because he was ESL. In fact, it was a good chance, looking back, that if I had pursued it with specialists, they would have taken a wait and see approach. He’s ESL, they would say. Let’s see how he develops.
It nags at me to this day.
This is why it is so important that a parent raises these issues with the school. Don’t ever assume that nothing is wrong because the school would have caught it if there was. If you feel in your gut that something is different, go to the school and tell them. Go to the doctor. Don’t worry about how you appear to them. You are your child’s best advocate. It would be WONDERFUL to check into something that is bothering you and find out that it’s nothing. So much better than to not check and find out later that it was, well, something.
I taught for fifteen years and then, after I became a mom to an amazing boy with special needs, I stopped teaching and stayed home with him. It was at this point that I also became certified to teach in special education. Just for myself. And for him. I have the unique perspective of having taught in general education and sat through many, many ARDS and IEP meetings as the gen. ed. teacher. And then, I have sat on the other side of the table as a parent in the meetings. Not once, in all these years, has any school staff member denounced a parent for checking out something that looks different. In fact, when parents do this, it garners major respect on the part of the school. When a parent inquires about something that they think looks different, they are doing their job.
