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.
When you take a special needs child to see a specialist such as a neurologist or a therapist in their offices, usually those professionals know what such a trip entails and how to handle it. However, I have found that a trip to the good old, regular MD is another kind of visit. Unless that doctor is also a specialist, they are used to seeing neurotypical kids. It’s probably not their first rodeo, but neurotypical is what they see, day in and day out. And so, sometimes the staff seems similar to a deer in the headlights. You can see it on their faces – oh, this is different.
This is OK. In fact, if I look at this as an opportunity, it is possible for me to educate them to make a smoother visit.
My youngest child is my son, Kai, who is six years old and has special needs. Kai has PVL, Duplicate Chromosome 16, Autism, SPD and more.
How have I simplified the process of taking Kai to the doctor? Here are eleven steps that make that process easier.
I schedule for either the first appointment of the day or the first appointment after the lunch break.
Waiting is very difficult for Kai. The shortest wait time yields the best results.
2. I write a list of what I need to bring and follow the list as I am getting ready.
When we travel with Kai, he sits in a car seat with a blanket. He still has a diaper bag. His diaper bag has the following items in it: diapers, wipes, bottle, changes of clothes, tablet, hotspot, cookies, toys, Wal-Mart bags for poopy diapers, straws in case he needs to drink something not from the sippy cup (which he will only use for milk), plastic spoons, baby food. Making sure that everything is replenished and ready to go helps me to smooth the way for him. Also, if I think that it won’t be a meal time so I won’t need his food, I am not planning ahead. I just never know how long some things take and I have learned that bringing it no matter what is the best strategy.
Kai will have a significantly better visit if I bring his tablet. I now always bring a hotspot as well. I have gotten into trouble before assuming that places have Wifi.
If Kai has to wait anywhere for more than 3 minutes without a tablet to distract him, he will start to fuss. If we have no tablet, I sing to him for about a half hour, which may keep him more or less occupied. I sing in front of anyone and everyone. We’d have another few minutes of eating cookies (vanilla wafers, Wal-Mart brand, no hydrogenated oils). And that will be all he can tolerate, if that long. A visit of an hour would be too much. He would meltdown. He would pull on my hand in his you-need-to-get-up-and-we-need-to-leave gesture. He would throw himself on the floor. He would cry. He would hit himself. With a tablet, we can wait much longer. Yes, I know that too much tablet time is bad. But I also know that I need to do what I have to do sometimes to make life work for me.
3. I bring a partner if a partner is available and if I think it will help.
If Kai’s dad is available, he always comes with us to the doctor. But because we also have an 8 year old, if we have no care for her, they will stay at home together. We have learned that it is easier when only Kai has to be entertained and distracted. If Kai’s dad is there, as soon as the exam is over, Kai and Daddy can leave. They can go for a walk through the clinic, go outside or go to the car. And I can finish out the waiting time for instructions and prescriptions without forcing Kai to sit through that as well.
4. I tell the staff what they need to know.
In the past, when Kai has had to visit the doctor, the staff has tried to talk to him. He doesn’t answer them. He is mostly non-verbal, just starting to talk. He can say, “Hi,” if he chooses to when prompted. I tell them immediately that he has special needs (although if the staff isn’t frantic, they usually notice). I have always had to explain what PVL (periventricular leukomalacia) is and about all of his other diagnoses. Duplicate Chromosome 16 also trips them up. The staff is always a little embarrassed that they don’t know what these are and I always comfort them, saying something like, “No one ever knows what they are. Even doctors don’t know. Don’t worry about it.” If I am really on top of my game, I will bring written information on his diagnoses for them to keep in his file.
5. I have the staff tell me what they want to do and then I tell them the best way to do it with my son. They are the experts in medical care. I am the expert when it comes to my son.
Kai won’t follow directions the way a neurotypical child does at the doctor. From the very beginning of the visit, I tell the staff that if they explain to me what they want to do, I can help them with Kai. If they want to look in Kai’s throat, I have to run my thumb and forefinger around his teeth in his mouth and exert pressure down on his jaw to open it so they can look. I almost never get bitten anymore. When they want to weigh him I have to talk him through getting on the scale. “OK,” I’ll say, “Put your hand on this handle. Now step up with your foot.” Long wait. “Step up, Kai.” Then, sometimes I have to help him put one foot and then the other on the scale. He may or may not stand still long enough to get weighed. Same for height. He doesn’t like getting his blood pressure taken, having his ears looked in or having the stethescope on his chest. I tell the staff that if they can get what they want, great, and if they can’t, we will just have to let it go. I do everything possible to help them, but if Kai doesn’t want to get his blood pressure taken after we attempt it a couple of times, they will just have to live without this information.
6. I ask for help.
Depending on what Kai has to go through, I have to be creative to get him to cooperate. He is not interested in their stickers. A lollipop means nothing to him. The last time he needed a blood draw, the staff asked me how I would like to handle it. I asked for help. We needed three people to make it happen. I’m sure they thought I was nuts, but I had Kai lay down on the examining table and I CRAWLED ON TOP OF HIM AND PINNED HIM DOWN. I then sang into his ear the entire time. A nurse stood by his head and tried to relax him and another nurse held down his arm and did the blood draw. I warned everyone to stay clear of his legs because his kick is extremely powerful. This worked. Then I signed and said, “All done,” the way we do. We have had x-rays of his lungs in the past. I have to put the drape on when he puts his on. We do it together. I try to hold him still. I have asked for help doing this as well. It takes many, many tries.
I am also not afraid to ask the staff to speak up or repeat themselves. Kai is often fussing in my ear in this setting. I can’t hear them talking but I know I need the information, so I let them know.
7. I walk away.
Sometimes, the visit is just not going to go well. This is just a fact of living the special needs life. If we get there and Kai has a huge meltdown or the doctor is running late or there is something about a staff member that we are dealing with that aggravates Kai, I am OK with walking out. This is a last resort, but I’ve done it. I am Kai’s advocate before anything else.
8. I reschedule.
I know when Kai is having a bad day. It doesn’t happen often, he’s usually a very happy kid. But, just like a neurotypical kid, Kai has bad days. This is not a day to take him to the doctor. If, on appointment day, I can already tell that it is going to be extremely rough before we even leave the house, I will reschedule. Why subject either of us to that when I don’t have to?
9. I speak up.
If the staff is intent on getting information and Kai is truly becoming aggravated, I give them opportunity but I also know when to cut them off. I do this kindly but firmly. Kai hates having that thing put on his finger that takes his heart rate and shows how oxygen saturated his breathing is. I let the staff know in advance that if they can get the information, great, but there is a limit to what I am willing to put Kai through. Unless it is directly related to illness, there is no reason to let Kai become excessively agitated. I won’t let that happen. The staff doesn’t always love me for that. That’s OK. It’s not my job for them to love me, it is my job to take care of my son.
If we have to wait for prescriptions and instructions for Kai, I will request as the staff leaves the room that they expedite this as quickly as possible. And, as I said before, if Kai’s Dad is there, they leave and I wait. But if he’s not, by this point in the visit, the staff knows why they need to move things along. When Kai and I leave an examining room, it is usually covered in cookie crumbs, athough I try to pick up the big chunks of cookie. Packing up to leave is like packing to go on vacation except there is no relaxation coming when we get there. There are probably used wipes around. Kai has learned to shred the paper that is spread out on an exam table so there is that mess too. Invariably, he has taken his shoes and socks off and so those need to be put back on. The cookies and toys and hotspot and tablet go back in the diaper bag, along with any changes of clothes. The entire time I am packing back up, Kai is usually yanking on me to leave. He wants to go home and be in his safe place. His diaper bag is a backpack. I put my crossbody purse on first, then both backpack straps go over my shoulders. Once I am loaded down like I am going hiking, I take Kai by the hand and we go. The staff usually makes an effort to move things along, but if they aren’t moving fast enough, Kai and I leave the exam room and walk up and down the hall, past the desk area where prescriptions and instructions are worked on. He is usually loud and fussy by this point and they seem to work faster under this (subtle!) pressure. This is how Kai speaks up too!
10. I get it in writing.
I am so distracted when we are at the Doctor’s office that I often have no idea what they’ve said to me when giving me prescriptions. By the time I get Kai to the car, that information has disappeared from my brain. I ask that everything be written down. This way, if I forget (and I will), I have something to refer to.
11. I thank them endlessly. I tell them how wonderful they are.
You have never seen a more grateful person than me when I take Kai to the doctor’s office. Compliments? I give them endlessly. Feel goods? I hand them out like candy. Phrases like, “Thank you! You are wonderful!” and, “We are so grateful,” fall from my lips repeatedly. I don’t say them if they aren’t true! But if they are, I say them often. This greases the wheels, gets what Kai needs and leaves everyone feeling good when the visit is over. It costs me nothing, and yields me so much.
What are some of your strategies at the doctor’s office? Please share in the comments below.
In the hectic world of special needs caregiving, I often have a monologue running in my head of all of the things I “should” be doing. I should be doing more. I should be doing better. I should be doing that differently. I should have spoken up. I should purchase that developmental toy. I should make a list of things that I want to accomplish. I should make a list of things that I want my child to accomplish. I should be a stay at home parent. I should get a job so that we can have more money. I should start a home business to make money while being a stay at home parent.
I should clean even though I am exhausted. I should do laundry. I should buy more back-zip pajamas so that my son doesn’t get into his diaper to “play.” I should wash the pajamas we have. I should call the doctor. I should call the dentist. I should give my son a longer bath so that we can work on writing with bathtub crayons. I should read my kids more books. I should cook something that doesn’t use the microwave.
I should locate a sippy cup that doesn’t have the softer nipples that we keep having to replace by mail order because my son bites through them. I should buy one of each kind of cup and keep attempting even though I know my son will reject all of them (he already has) and the money will be wasted because even though he needs those reintroductions, let’s face it, right now it’s not happening.
I should let them have less screen time. I should nap less. I should nap more. I should attempt to make myself more presentable. I should shower. I should check their backpacks more. I should write another note to the physical therapist about my son’s toe walking and the connection between PVL and cerebral palsy.
I am “shoulding” on myself. It is a never ending thought process of everything that I should be doing and doing better. Every perceived deficit that I have is covered when I should on myself. And every way I imagine that I am failing my special needs son (I “should” call him my son with special needs… no wait, my special needs son… I “should” go back and reread that article).
It seems that no one is harder on me than me.
It is very difficult to get out of this pattern of “shoulding,” considering the fact that I “should” be getting stuff done. So I have come up with a couple of tactics that I “should” try to alleviate my “shoulding” on myself.
I “should” make a list of everything that I accomplish on a daily, weekly, monthly and yearly basis. I “should” stop and look around and see if my family seems content. In fact, I just paused and looked up at my family and they are all happily content, right this second. I “should” think about if my special needs son (“son with special needs?” I really “should” reread that article) is making progress at all in any area whatsoever (he is). I “should” think about the fact that what I have right now is something that I desperately wanted 20 years ago and how blessed I am to have it. I “should” realize that even though it doesn’t look like I imagined that it would, it is AWESOME.
I should take a break from shoulding on myself. But I won’t. It is the cornerstone of special needs parenting.
So, instead, maybe I should be kinder to myself and remember all that I have accomplished.
Yeah, I should do that.
Do you should on yourself? How do you give yourself a break from it? Please share in the comments.
It is said that raising a special needs child is hard on a marriage. The level of stress can be extremely high. The focus tends to be always on your child. But, with some planning, the process can actually strengthen your bond. Here are ten ideas to consider.
Make an intervention plan according to your strengths or what you feel comfortable with.
When one of our children throws up (typical or atypical), my husband and I attack the situation from two different directions. There is no discussion at all at this point after so many years. I don’t like cleaning up the mess but I don’t mind cleaning up our child at all. My husband doesn’t like to clean up the child but doesn’t mind cleaning up the mess. When we discovered our preferences, we realized that together, we could conquer the problem quickly. What repeated situations are tripping you up as a couple? Discuss together what parts of the situation you feel competent handling and what parts you don’t. You may be able to break it down by taking turns, assigning different sections of the task or another solution that makes sense to you.
2. Have a safe word.
You know when you are JUST DONE? Maybe your child has been having a meltdown for an hour or two or ten. Maybe they are asking the same question over and over until you want to just explode. If it is getting intense and you need a break, instead of having to scream out to your partner in frustration (I just can’t handle one more second of what she’s doing!), have a safe word. Make it a word that makes no sense in the course of daily life like “banana split,” or perhaps say the date of your wedding anniversary. When you plan in advance between you that if you say this it is an alert to your partner that you… just… can’t… go… one… more… minute… your partner’s roll is to jump in and give you a break. You may want to set a predetermined time period. Or maybe not. The two of you can decide what will happen next. But decide this in advance – not in the middle of the stressful event.
3. Give each other respite.
It would be so nice to be able to spend alone time together. But if that is just not happening, TAKE TURNS. Caregiving can be exhausting. Plan in advance so that you both get the respite you need.
4. Listen to and validate each other’s grief. You may be grieving at different rates or intervals.
I know one couple where the wife is totally fine with her son’s special needs and has little to no issue about “who he could have been.” The husband, on the other hand, is struggling. He had visions of them throwing a ball around together, hunting and fishing together and doing all kinds of things that typical Dads and sons might do. It is very hard on him. It doesn’t mean he doesn’t love his son but his vision of what could have been is still very strong. Validating your partner’s feelings about this, acknowledging their grief, is extremely important. And this grief may come in cycles. Please remember, just because it doesn’t affect you the same way, doesn’t mean your partner’s grief isn’t valid. If it seems like the grief is deepening over time and affecting the parent/child relationship, seeking grief counseling could support not only this process but the health of your marriage.
5. Don’t forget to celebrate your marriage.
Every little accomplishment your special needs child makes is cause for celebration. You already know this and need no reminder. Don’t forget to celebrate your marriage as well. Your wedding anniversary, the anniversary of when you first met, monthly acknowledgments of special dates all should be remembered and noted. Special needs parents have a tendency to let these things fall by the wayside. Maybe you don’t have the time/energy/money/child care to go out to celebrate – that’s OK. Just saying that you remember and pausing for a moment together can be special.
6. List what is important for your child in terms of mandatory, very highly needed, moderately needed, like it but could live without it and could live without it.
Cut down your list. For everything. If you can do without certain appointments, let them go. Start saying no unless it is mandatory or very highly needed for your child. Free up some time here and there. Rotate therapies so that you aren’t going 5 days a week, if you can. Maybe 4 weeks on and then switch to something else for 4 weeks? Only if it works for your child. If you need time to breathe, take it. It will be OK. When you have absolutely nothing left within yourself, you have nothing to give. And that goes for you marriage AND your special needs child.
7. Talk about your needs, your wishes and your dreams. See if you can make some of them happen, together.
Especially at first diagnosis, special needs parents are so caught up in what their child needs that their own needs fall by the wayside. Often, parents never feel that they can come back to focusing on anything for themselves. They feel guilty. They feel like they are the last priority on a never ending list. But there is no point in living if you are unable to experience life. The way you do things may look vastly different than you thought things would look, but you can still do them. Discuss it. Think outside the box.
8. Reaffirm your love often.
My husband and I used to get remarried every Thursday. We are the only ones who would attend. One of us would conduct the ceremony, we would both say our I do’s and we would then kiss to seal the deal. Not your thing? Make your own rituals as a couple. It doesn’t have to involve money or going out. A couple of minutes is all it takes.
9. Know that marriage, like life, is cyclical.
There are going to be times when you are a well oiled machine. There are going to be other times when you wonder who the heck this person is. Some days you will realize that you may be on the same page but in two different books. Marriage is cyclical. You have upward cycles and downward cycles. Usually, if you are patient, it cycles around again.
10. Know that raising a special needs child, like marriage and life, is cyclical.
Sometimes you will feel like your team has it covered. Sometimes you will feel like it is getting out of control. This is all normal. It’s not always going to go perfectly. And that is OK.
Consistence and persistence beats resistance. The more you plan and function together as a team, the less stress you will have. Say hello to a stronger marriage!
What do you and your partner do to strengthen your marriage as you parent your special needs child? Please share in the comments below.
I was having a conversation recently with someone who said that there are very few special needs divisions in life. His stance was that there should not be a special needs division in a karate tournament. That teaching those less able to achieve, in his mind, was a less pure practice if they couldn’t get it exactly right (or even close). He felt that it is a mockery of what karate is supposed to be. He is certainly entitled to his opinion.
Here is mine.
When a child is born, the process of enculturation begins. This simply means that the child is taught what society accepts as “normal” in practice and procedure. It is the close family members and people who raise the child that impart most of this information. After a while, the outside world begins to present itself to the child. As different views and practices are presented, the process of acculturation begins. Again, this simply means that new and different cultural norms are presented. Here, people learn new values, rules and procedures that other social groups may be practicing. As a child begins to compare what he or she has learned through the enculturation process with the new concepts of the acculturation process, the child may begin to blend socially accepted practices. What does this mean? It means the child, as they grow and become more aware, forms his or her thoughts about what is acceptable in the world. Of how it is and how it should be. A very strong beginning from the family in terms of what they are capable of (positive or negative) usually prevails.
In other words, YOU, as the special needs caregiver are one of the strongest voices in your child’s internal dialog of what they can do. If you tell your child that there is nothing they can’t accomplish, they will most likely believe it. If YOU show them that their process may look different and their outcome may be different than other people’s, but it is no less valid, they will internalize this. Later, when others tell them that they “can’t,”(or that they will never be good enough to matter) they may falter, but they will remember their first enculturation process – and again, that came from YOU. They will rely on this inner voice (that YOU have given them) to move forward.
It doesn’t matter if their achievements don’t look as mighty to others. It doesn’t matter if what their trying to accomplish is less “pure” than how other people do it. What matters is that our children have high expectations of themselves and what they will succeed at, whatever that looks like.
Do you know who doesn’t understand this? People who don’t have to work as hard. It is so easy for people with typical brains to follow the instructions, put in the time and practice and succeed if they want to. It is so easy for them as children to watch an adult pick up a cup and just copy them. It doesn’t occur to those people what it would be like to have to think through every single tiny step of the process and practice, hand over hand for about 200 repetitions to lock in that motion because their brain just doesn’t work that way.
When a child is willing to follow their internal dialogue (which YOU have given them) that they are warriors, that they are smart, that they can do anything, that they can succeed- and then practice over TWO HUNDRED times to be able to pick up a cup, are we to denounce this achievement because the water spilled?
In a life where “there are very few special needs divisions,” it is our job, as their first teachers and as we lead our children through the enculturation process, to create them. We should demand of our special needs children their very best. We should accept no less than success, whatever that looks like for them. And, as we are the ones who shape society, well, society needs to bend quite a bit.
I have expectations of excellence, for my son and for the society that he is a member of. And believe me, both will rise up to meet the occasion.
My son, as he is, is enough. Isn’t your child with special needs enough?
Please share your special needs child’s amazing achievements in the comments below.
