Holiday Gifts For Special Needs Caregivers That Have “Special Needs” – Keto/Diabetic

In the annual quest for gifts for everyone on your special needs support team lists, a special needs caregiver can become overwhelmed.  Financially, needing gifts for twenty is not uncommon.  Gifts for teachers, assistant teachers, bus drivers and therapists can seriously put a dent in your holiday budget.  And don’t forget the diagnostician (to butter them up for the next ARD) and the school administrators (also buttering up for next ARD).  It is quite common to get to know these folks pretty well as a lot of time can be spent with them depending on what is happening with your child.  I know that one of my son’s bus drivers only drinks tea and not coffee, so it’s easy to get her some special tea and maybe a cute mug. We all know what’s available for these types of gifts. But his other bus driver, two of the assistant teachers, and, oh, wait, the office manager (can’t forget her!), they are keto.  And his teacher is diabetic.  How to find something special and sweet for them that they can eat on their special diets and not break the bank?  I am here to help!  Below, the top five sweets that they can eat, that are also affordable.  You are welcome!

One of my absolute favorite chocolate experiences!  This package contains two mini dark mint bars, 1 dark chocolate bar, 1 milk chocolate bar, 1 dark raspberry and 1 dark almond.  Their website has a page where you can read all about the owner of this amazing little company – she lost over 70 pounds by eating Keto but was able to eat 2-3 ENTIRE bars of this every day.  But why would you want to if it didn’t taste good?  They are A-MA-ZING!!!  Only 1-3 net carbs for each bar and they are sweetened with Chicory root and erythritol, the only sweetener alternative I actually like.  You could order this and split for multiple small gifts or gift the box.  And, if you know me personally, this is a gift I would love! Kidding, not kidding.

For those who can eat xylitol as a sugar substitute (it’s not my personal preference but plenty of people like it and eat it), these ice chips come in cute tins that resemble an Altoids container,but that’s where the similarity ends.  This variety pack comes in six flavors including cinnamon, licorice, berry mix, lemon, root beer float and peppermint.  Again, break it up into small gifts with some nice holiday cards or give the whole six pack.

This dark chocolate with peanuts and sea salt sounds amazing!  Even better, it’s sweetened with all natural monk fruit.  Nothing artificial.  Only 2 net carbs per 1 oz. serving.  This one looks fantastic!

There is no picture in the above link, which is sad because it would show Lily’s dark chocolate bars which are incredible!  This company also makes sugar free chocolate chips for baking and eating straight out of the bag (which I must admit I have done with great enjoyment).  This is a package of 12 bars of 70% dark chocolate.  It is sweetened with stevia and half a bar has 4 net carbs.  It also comes in other flavors.  Divide this box of twelve and conquer your list!

These four products should help you finish off your list!  What other products do you rely on to give as gifts for those with special needs dietary needs?  Please share in the comments section below.

Just a heads up, I want to let you know that as an Amazon Affiliate I may earn a little something from qualifying purchases.

Naked child? Outsmart them

My son is special needs and loves to strip down.  While he is only doing this at home (for now!), it became an exhausting, endless round of dressing and redressing.  Many times, we glance up and not only is he naked, but he has gotten into his diaper.  Clean up is not fun!

Does your special needs (or typical!) child like to strip down and be free?  I found this wonderful solution to these unexpected naked moments.  Back Zip pajamas keep private things private and diapers in place.  It has been a life saver for us and I can’t recommend them more.  

Just to be totally honest, I want to let you know that as an Amazon Associate I earn from qualifying purchases.

Aversions to Potty Training – Why I Suck At It

My son Kai is six years old and not potty trained. He is special needs and low functioning. Considering the fact that his older sister is eight, we have now been changing diapers for EIGHT YEARS.

I married a man who had custody of his three kids. I went from having no kids to raising three kids full time. At the time, the older kids were 12, 10 and 6. They were, thankfully, already potty trained.

I had no issues with the big issues. I talked to the older kids about school, dating, bodily functions, periods, sex, porn, interracial and same sex dating, drugs and anything else that came my way. I bought first bras, first condoms, period supplies and school dance clothes. I created the “continuum of acceptability for sexual activity,” and explained to the older kids what this consisted of. I was fearless. I was on fire. Until it came to potty training.

Potty training stumps the heck out of me.

I don’t really know why. There is something about it that is just… intimidating.

Eight year-old neurotypical Amaya was potty trained at daycare. When she was at daycare, she did it. When she was at home, she didn’t. For a while. I told her she had a choice at home – wear diapers, or wear big girl panties. She chose diapers. I let her. And, eventually, when the diapers started to get too tight and they weren’t comfortable, she started to choose the panties. And that was that. She had a few accidents and then she was pretty much trained.

Kai has no interest in potty training. He is mostly non-verbal. His diagnoses include PVL (periventricular leukomalacia), which is damaged white brain matter. His neurons misfire. This doesn’t get worse over time and can only improve. Kai has to be trained to do everything, microstep by microstep. Eventually, after massive amounts of repetition, it locks in and Kai can do things without having to think of every single step individually. He also has Duplicate Chromosome 16, Autism, Sensory Processing Disorder and more. Kai does not signal to us when his diaper is full. In fact, not only does he not tell us, but if we don’t take steps to prevent it, Kai will explore what is in his diaper.

Kai is not just going to pick up being potty trained at school.

I am in trouble.

First, I feel inept. Incapable. Second, Kai has a penis. I don’t. How do you train someone with a penis? Anyone? Anyone? Third, when I have put Kai on the potty, he doesn’t seem to understand why he is there. Fourth, Kai has no interest in rewards, sticker charts, books about being on the potty or aiming pee at Cheerios (or Fruit Loops). Fifth, Kai is WAY too big for baby potty chairs. And too short for his feet to rest on the ground when he sits on the big potty (hey, a stool! I should use a stool! But, I digress).

I have asked for help. I have asked for in home services for this and not received them. I have asked that they train him at school (I think that they put him on the potty to sit daily, but nothing is happening). I have gotten a book entitled, “How to Potty Train a Child With Autism.” I have skimmed it. I haven’t read it.

Here is the big problem – for some reason, I can’t seem to get out of my own way.

Do you ever feel like you are just stuck? You see what result you want, you see the different paths you could take to get there and then… you … just… can’t… move.

Here I stand, ready to tackle anything, SuperMom, and I CAN’T POTTY TRAIN MY CHILD.

There it is.

I suck at potty training.

At least for now.

What strategies have you used to overcome a problem where you felt stuck?

Why Are Some Special Needs Parents So Effusive? What’s the Deal?

Imagine this. Your neurotypical child, about 6 years old, is at a pumpkin patch. After going on a hay ride, listening to a story, taking pictures, doing arts and crafts and checking out the pumpkins, it is time for a break. Your child decides to try candy corn for the first time. He likes it. You and your spouse smile at each other and watch him eat three more pieces. You now know that he likes candy corn. In the future, you might offer him some again. You finish your break and go back to your activities.

Now imagine this. Your neuro-atypical child, about 6 years old, is at a pumpkin patch. He does all of the above activities, with assistance. It is time for a break. His older, typical sister gets some candy corn. You do not bother to get a whole package for him, because it is very unlikely that he will try it. But you snag one of sister’s and hold it out in front of his mouth and say, “Eat?” He eyeballs it and you wait for the rejection. But, to your surprise, he leans over and bites the white tip off! He chews it and thinks it over. Your mouth is hanging open, chin stretching toward the ground. Not only has he not rejected it, he leans over and eats the rest of that piece and three more as well. You and your spouse lock eyes and practially jump up and down. Both of you are smiling from ear to ear and you race back to get him his own package of candy corn. You tell the woman giving out the candy corn that your son has just tried it for the first time! It is amazing! You tell three more people along the way, strangers all. Feeling like you and your spouse have just won the lottery, no one is putting a pin in this balloon, even when he refuses any more candy and moves on. You call people. You post it on Facebook. It is an incredible day to remember. You call the grandparents. You make a scene and tell your boy how incredible he is for eating the candy corn. How proud you are. How you knew he could do it. Your son does a little happy dance. People all around are watching. And, you’ve got to know, that some of them are thinking – what’s the deal? It’s candy corn. He ate. He’s obviously eaten before, he’s about 6 and still here. Why is she going so nuts?

It is the journey. It’s the history of every miniscule step that got us to this moment – the moment when he ate candy corn.

When you look at your son taking that bite of candy corn, you remember when.

You remember the ENTIRE YEAR when he choked at every single meal on pureed baby food and needed you to intervene with the hook method. It was your responsibility to save him from choking, to save his life EVERY SINGLE DAY, multiple times a day, for an entire year.

You remember that he didn’t even taste birthday cake (or any cake) until he was three years old – and that you cried with joy when he did.

You remember that just last week you were out with him, STILL FEEDING HIM BABY FOOD IN PUBLIC at the age of 6. Because, for some reason, even though he has (thankfully) stopped choking, he is incredibly reluctant to move on from purees.

Watching him eat candy corn, you think of all of his therapists over the years. Of the time he refused to cooperate and snapped a sign language “no,” at a therapist, causing you to splutter with laughter, even though you knew it wasn’t appropriate. You think of when he did feeding therapy, dragging his feet the whole time, eyeballing you with the “are you kidding me?” expression that showed that he didn’t want to eat anything that wasn’t baby food, no matter how it was presented. You think of all the foods he has rejected. All the foods he wouldn’t even taste. You think of all the times it was supposed to be a win that he let a therapist force food past his lips and touch his closed teeth, even though in reality, it really wasn’t much of a win. Because that food was never going past his teeth. Not if he had anything to say about it. Like, ever.

And then you think of all the other wins over the years. The first time he walked at the age of 22 months after months of therapy. The first time he walked up and down stairs (again, after months of therapy). The first time he spoke a word (after months of speech). You think of the Herculean effort your son has put into everything that he has achieved, things that just come naturally to every other typical child. And how, with every small increment of progress, there is an entire team of family, school personnel and professionals who are taking these steps forward with him.

He ate a bite of candy corn. Then he finished that piece and ate three more. Parents of neurotypical kids see this and smile. They think, “How nice.”

But why is the special needs parent so effusive?

If you only knew the back story. Wouldn’t you be?

What achievement has your special needs child made that has absolutely made you swoon? Please share in the comments below.

5 Reasons Why I Model Our Lives On Our Disney World Trip and Why You Should Too

We recently took a trip to Disney World. I was nervous, I admit. There were seven of us going. Our son, Kai, is 6 years old and special needs (PVL, Autism, Duplicate Chromosome 16, SPD, Coprophasia, Low functioning). My husband, Billy, is recovering from a long illness that makes him low energy and he has daily physical pain. Our daughter, 8 year old neurotypical Amaya, wants to experience everything. Our daughter (she’s my step-daughter but I’m laying claim) Autum, her husband Jason and our grandson, 6 year-old Jacob, all neurotypical and ready to roll. And me. I have fibromyalgia and anxiety disorder. Fun group, aren’t we?

We actually can be a very fun group. We generally have a good time together. But since there were so many individual needs, it seemed a daunting challenge to make sure everyone was taken care of. Disney World has some amazing things in place for people like those in our group. And I, also, put some things in place to ensure our success.

Now, post trip, I think about how great it went. I have analyzed why it worked and what could be tweaked so that next time we attempt something like this it is even better.

But then, I had a new thought. How can I apply what we did to every day life? How can we use these tactics so that every day becomes a little easier? Here are my tips for applying Disney joy to every day life in a special needs household:

  1. Identify yourself. At Disney World, when you have someone with a disability in your party, you go to guest relations and identify yourself. They will give you all sorts of assistance and show you how to use programs they have in place to make your visit easier and more joyful. This works in everyday life in lots of different ways. On an airplane, I have identified us to flight attendants who have given us special attention. I have introduced our family to those sitting around us on the plane and explained that Kai is a good traveler but he stims so if the seat starts shaking, this is why. I have invited them to communicate with me if it is disturbing them with excellent results. People are so much more understanding than if the seat was just shaking violently in front of them with no explanation. We have self identified and asked to be seated in an empty party room in restaurants so that Kai could sit on the floor or be a little louder than most. And, although we haven’t attended yet, most major movie theatre chains have a special needs day where they show movies with the lights on and the sound turned lower. You just have to identify yourself to the theatre. Special needs folks can do what they need to do while everyone enjoys seeing a movie together.
  2. Plan for a safe place. We were at Disney World in October hoping to dodge the hot weather but it was still brutally hot and humid. There was a lot of noise in the park as people had a wonderful time. Bright colors, music, screaming children, lots of action. At one point, Kai got overwhelmed. Disney World offers a wonderful place for him to decompress. We were able to go to the clinic and were given a curtained off area with a bed. It had delightful air conditioning, was very quiet and they had delicious, cool water to drink. Kai was able to rest, watch his tablet and relax. When he was ready, we went out and tried again. In everyday life when we go out, we make plans to use this concept. On Halloween this year, we had two different safe places for Kai. Even though he can walk, we brought along a stroller that Kai feels safer in. When he became overwhelmed with all of the people and action, he climbed into the stroller and relaxed. The second safe place was our van, which we parked nearby. Kai didn’t need it this time, but in the past, if he became overwhelmed, one of us could go with him to the van to take a break, rest and recharge. When we first became special needs parents, we would just go out and hope for the best. With no plan in place, if Kai couldn’t handle it, the whole family had to leave and usually there was a scene. Kai would meltdown because he felt overwhelmed. With two different levels of a safe place ready to be used, our family gets to go to more places and stay there longer.
  3. Go out in groups if you can. My husband, Billy, can only do so much as he recovers from being ill. My body can only handle so much due to fibromyalgia. Kai likes to go places but long day trips out are still somewhat overwhelming for him. Amaya, our 8 year-old, wants to go and do everything. So does Jacob, our 6 year-old grandson. What do we do? We trade off. We all went together at the outset. When Kai needed to go to the clinic, Autum and Jason took Amaya and Jacob while Billy and I took Kai. We decided that they would meet us at the clinic after a certain amount of activities. It worked beautifully. You can divide and conquer like this at the mall, doing physical activities like skating, for birthday parties and more. I realize that not everyone has family or support like this but if you do, plan to do things together.
  4. Ask for what you need, even if you aren’t sure of what that is. We started our first day at Disney World at guest relations where we were taught to use the disability access card. This is a wonderful system where you approach a ride, show your card and are given a time to return to ride. It is very similar to Fastpass but you don’t have to schedule using a computer or phone. This is a great accommodation except we were struggling. When we returned, we had to wait in the Fastpass line. Sometimes, the walk from the front to the ride is VERY long and we needed to leave the stroller outside. Add in the fact that there was often dim mood lighting, loud music and chatting people waiting to ride and it was a recipe for disaster for Kai. He needed his safe place. Billy was also having a hard time because he was riding on a scooter and leaving it outside and walking through the twisting, turning roped off areas was very difficult for him. I didn’t know how to make it better, but it was going to be a LONG, HARD day if we continued this way. I spoke to one of the managers at a ride and told her that we were struggling. She was wonderful, hugged me, and told me she was sorry that I was having a hard time. She then offered a new solution. We went back to guest services and requested a disability sticker for Kai’s stroller. This allowed Kai to STAY IN THE STROLLER and also allowed Billy to STAY ON THE SCOOTER all the way up to where we stepped onto the ride. When we stepped off of the ride, the stroller and scooter were right there. All we had to do was step off and they climbed right back in/on. Brilliant. I was so relieved I wanted to cry (I might have). If I hadn’t asked I would have spent the rest of the day struggling like mad, with a very unhappy son and an exhausted husband in pain. If you are struggling in daily life in a public place, or anticipate that you might, ASK FOR WHAT YOU NEED. Find management, lay out your predicament and ask for their input. I have gotten different seating in restaurants. Once, in New York at the Barclay Center to see the circus, we were given special needs seating so that Kai could get up and down without disturbing those around him. It is good to have an idea of what you need but if you have a problem and JUST DON’T KNOW what would make it better, ask. It probably isn’t the first time that management is hearing it and more people problem solving is better.
  5. Plan for down time. When I started planning our Disney World Trip I knew that three of us were dealing with limitations that the rest of our group didn’t have. We were going to be in Orlando for the week but ony planned on attending the parks for three days. I knew that even one whole day was going to be a lot for Billy, Kai and me so I decided that the three of us would only attend for two days. On Tuesday, we all went to Magic Kingdom. On Wednesday, Autum, Jason, Jacob and Amaya went to Animal Kingdom. Billy, Kai and I stayed behind at our rental house where we recovered, relaxed, napped and went swimming. On Thursday, the entire group went to Epcot. We were able to do this because Kai is low functioning and didn’t realize that anything was amiss. He was just happy to spend the day with Mommy and Daddy at home resting and swimming. You may have to tweak this if your child is more aware. But, everyone in your group could easily enjoy scheduled down time. Having extra down time meant being able to enjoy more fully when we were able to participate, a huge plus. Sure, we would have experienced more had we gone all three days but the quality of the experience would have gone way down. I am doing this in every day living as well. Schedule extra time for everything. If you think it will take 30 minutes but you can schedule for 45, do it. If part of your group wants to keep shopping but your special needs child would do better sitting in the food court or reading a book on a bench at the mall, take the time to do it. You may experience less overall but the quality of what you do experience will skyrocket. Having done it both ways, I would take quality over quantity any day of the week.

So there you have it. Five different ways to model daily life on a trip to Disney World. It would make me so happy if you took these ideas, tweaked them and made them your own. Make them work for you.

What strategies do you have that make daily living easier? Please share them in the comments below.

10 Quick, Cheap and Easy Moments of Self Care for the Special Needs Caregiver

You are a Dad. You are a Mom. A grandparent. Aunt, cousin, brother, sister, other. And, you are a special needs caregiver. You have one of the most important jobs in the world.

You are raising an angel. Your angel has their own specific set of strengths. And, their own special set of needs, circumstances, problems, differences, variables.

You are a superhero. You clear the path for them, organize their life, set up their world.

You participate in their world. Set them up for success at school. At therapy. At the park. At home.

You shadow them. You reorganize their environment so they don’t hurt themselves. They tantrum (or meltdown, which is different). You help pull them back together.

You are tired. Probably completely exhausted. Possibly depressed. Probably wondering where you fit in to your own daily life. Maybe you work, maybe you don’t. Maybe you are raising other kids. Maybe you have a spouse. Maybe you remember when you had your own interests and hobbies that did not include having memorized the entire script of Finding Nemo. Or having to clap for twenty minutes straight as we watch the same 30 seconds of Mickey Mouse Clubhouse over and over.

You are SO READY for some downtime. For “Me,” time.

The current lingo calls this “self care.” You need to take care of yourself. But when you look at self care lists on Pinterest, you think,

“I would love to take a bubble bath but I don’t have time.” (And I ran out of bubble bath six months ago)

“I would love the get a manicure, but I can’t afford it.” (and I don’t have time)

“I would love to have a glass of wine with a friend but I haven’t seen a friend in years except on Facebook.” (And I don’t have time. And I have to be sober for my child in case there is an ‘incident.’)

“I would love to go fishing, but I don’t have time.” (And I have to go buy a fishing license, which I’ve been meaning to do for months. And I can’t afford it.)

These lists don’t always work for us families and caregivers of special needs kids. So I decided that we needed our own list. Here, in no particular order, is my list of 10 Quick, Cheap and Easy Moments of Self Care for the Special Needs Caregiver.

  1. When making yourself a hot beverage of choice because we all know you need the caffeine, stand there for a minute and watch the coffee brew, the Keurig spew. Take 3-5 deep, calming breaths. Can’t remember to do this? Post a note next to the machine to remind you.
  2. I used to wear dangling earrings. I don’t anymore, in fear of them being yanked on. I replaced them with a sparkly hair clip. Or a bracelet I have made out of steel. Dads could put on a favorite watch. Take a minute and add one thing to your appearance for yourself that makes you happy. It might make you feel a bit more like your old self. Whether you are leaving the house or not.
  3. Can’t go fishing? Watch fishing. This may sound ridiculous to you non-fishing folk, but my husband turns on fishing on TV on Sundays and leaves it on. This relaxes him. Hey, if it works for him, why not give it a try?
  4. You know all those manipulatives your child has? You need one too. Keep a fidget spinner, a Rubik’s cube, a rubber band or whatever appeals to you nearby. Pick it up. Manipulate it. Especially when you are having obsessive thoughts about what else you should be doing to be a better caregiver. It gives an outlet for some of the energy.
  5. Take a shower every day. If you don’t have a special needs child in your life, you may think that this is a crazy self care item. You caregivers out there know exactly what I’m saying, don’t you?
  6. Drink more water. And when you go to get it, if it is in a chilled bottle or cold glass, hold it to your forehead or the back of your neck for just a minute. It’s relaxing.
  7. Feel like you are about to have a meltdown yourself? Rub lotion on your feet or your hands. Concentrate on the cuticles of your toes or fingers. If you did your feet, put comfy socks on and continue on with your day. Extra points for Dads for this one.
  8. When your child is having a tantrum or meltdown and it is going on for what seems like (and could be!) forever, there are pauses. Losing your sanity? FInd the pauses. Focus on them. At some point they have to take a breath. Even if its just for a second. While you are helping your child manage, help yourself manage by taking joy in these pauses. When the noise level is moving beyond what you can bear, listen for these tiny bits of heaven. I know it sounds a little crazy but I have used this method successfully. It works for me. The silence, quick though it is, becomes my reward. Focus on the pauses instead of the noise. Focus on waiting for the next one. It really helps.
  9. Learn ONE yoga pose. Try a forward fold. Or child’s pose. Google relaxing yoga poses for stress for beginners. I’m not saying start an entire practice (although maybe you will). Use your new pose to lower your stress level. One could lead to another to you doing an online video or a class or… don’t get caught up in this right now! Just try one. Use it. See how it goes.
  10. Our son is 6 and we still co-sleep. I actually enjoy this. My 8 year-old also co-sleeps with us. And my husband, thankfully. Everyone has their own bed (my husband and I share) but we are in the same room. They have their own rooms but don’t sleep in them. Think that’s nuts? You are not the only one who has that opinion. By the way, how many times have you woken to have a child in your bed? On your floor? On top of your feet? They get there anyway, don’t they? I am not suggesting that you co-sleep (although you can certainly try it!). But for the final quick, cheap and easy moment of self care, I am suggesting that you do what works for you. Sometimes it means going against the current advice that’s out there. Sometimes it means enduring raised eyebrows in public. Take a moment, take a deep breath and blow away the stress you feel from criticism. Everyone has an opinion. Until they’ve walked a mile in your shoes, blah, blah, blah. If you can, take care of yourself by letting go. You don’t need anyone else’s approval. You are a superhero and you are doing just fine. Really.

How do you practice self care? Do you sneak it in? Please share your suggestions in the comments below. We all need ideas!

Today It Wasn’t My Kid

My six year-old son takes the bus to and from school. He loves the bus. In the morning, he lets go of my hand, gives me a kiss and then walks on his own to the steps. I follow him, carrying his backpack. He always pauses at the bottom of the steps before climbing up. He has periventricular leukomalacia and one of the symptoms of this is having to think about every part of a movement before he can do it. Eventually these things, with practice, will become second nature and he won’t have to pause. But for now, he pauses. Then, after thinking about it, he puts his hand on the handrail, steps up the four steps and takes his seat. The nurse always buckles him in (she is there for another student, yet to be picked up in the mornings). The bus driver always greets him with love, like he is family. We chat for a minute, I wish them a good day and I wave as the bus pulls away.

We do this every day.

In the afternoon, the bus pulls up and my son usually makes excited sounds and wiggles around. He is happy to see me. Sometimes he has his shoes on and sometimes he is barefoot, having thrown off his shoes and socks. I might pick up a sock in the stairwell and then have him sit at the top of the stairs. I put his shoes and socks back on. He needs to walk to the door of the house now because he is too heavy for me to carry. I miss being able to carry him. I always get a kiss hello and a happy dance as he pulls my hand to walk back toward the house. We say goodbye to the nurse and the bus driver. I follow him up to our door and he pauses. He waits for me to open the door and, happily, he comes inside.

It is idyllic. Happy. Peaceful. It is my favorite time of the day. My husband loves it too. We are so proud of him. It’s perfect.

Except, one day it wasn’t.

I was out of town, a very unusual occurrence, helping a friend. My husband called me in a panic. Our son’s school had called. There had been an accident. Our son was still on the bus. Could my husband go get him?

My husband was frantic.  I asked him, what kind of accident? Was our son OK? My husband didn’t know. He couldn’t calm down. All he had heard was it was our son. There was an accident. Come, now.

We hung up and I waited, full of anxiety, while my husband drove to where the bus was to get him.

There had been an accident but if my husband hadn’t been so alarmed he may have heard that it was our son who had had one. Not the bus. Also, it kind of wasn’t totally an accident.

Our son had been sent to school wearing pants with a belt on and that belt was pulled as securely as possible without hurting him. The school had put him on the bus to go home with the belt buckled loosely. Not a big deal, you say? The belt is on, isn’t it? What’s the problem?

Over the summer he had begun the less than delightful activity of poop exploration. Touching it. Smearing it. Decorating with it. And more.

Apparently, he’s not the only one. When we told the school about it (and we had because soon they would be dealing with it, after summer break), they told us that lots of special needs kids did this. But they weren’t comfortable with pulling the belt so tight. They thought it might hurt our son. We had been doing it all summer with no marks, no discomfort, no nothing. They chose not to tighten it. So our son had a bowel movement on the bus. And proceeded to redecorate.

It was smeared all over him. All over the seat. On the seat belt. On the harness (special needs bus = harnesses). Shoes. Window.

They wanted my husband to meet the bus to pick up our son. The bus needed to go to the bus barn. They needed to clean it and disinfect it.

Imagine this. I am in another state, standing on top of a mountain, helping a friend. I am on the phone with my son’s school. I am looking out at the trees, standing outside of my friend’s house discussing options. Alternatives to the belt. They weren’t comfortable buckling it as firmly as it needed to be to prevent these events. They wanted another way to prevent this. And they were asking me how we were going to do it. Panic set in. I had already brainstormed before the belt. I had thought, behavior modification? Essential oils? Psychotherapy? Neurotypical kids could use sticker charts, rewards, books about using the potty. Our son had no interest or understanding of any of that. Then one day, a thought popped into my head. “Dummy, have you tried a belt?” (Yes, I said dummy to myself. I don’t usually call myself names but it seemed so obvious, how did I miss it?) Most of the time over the summer the belt had worked. Now, the school didn’t want to use it. I was at a loss. I felt isolated. I felt a little embarrassed. I felt like I was the only person in the world dealing with this problem. I wanted to cry. I was back to square one.

I was so thankful when the school came up with other options. Pajamas that zip up the back, which he could wear to school. Or overalls. Overalls! Super cute and we live in the country so he would blend right in. They were expensive at $25 a pair (You shop the sales, right? These NEVER go on sale). But we got ’em. And, so far, our son has not figured out how to get around them. He will. Of this, I have no doubt. He is really smart. Being special needs doesn’t mean he’s not smart. He is also a problem solver. If it catches his interest he will attempt every possible way he can think of to get past the overalls. Then we will have to come up with another solution. But, not yet. It is a break. A breathing point. For now, it works.

This afternoon, the bus was late by about ten minutes. It has never been late before. I walked out the door into the crisp fall day and went to meet my son. He did his happy wiggle dance and made his happy noises. His shoes happened to be on today; he hadn’t taken them off. The nurse unbuckled his harness and he stood up and came to the steps to meet me. The bus driver handed me his backpack. My son did his happy dance again at the top of the stairs. I stepped up and got my afternoon kiss. He put his hand on the handrail and paused, thinking about it. Then, with my encouragement, he walked down the steps as I envisioned all of the hours of therapy we had done in order for him to be able to do this. I’m sure my eyes were shining. I am so in love with him. As I wished the nurse and bus driver a good weekend, my usual custom, the bus driver stopped me.

“I’m sorry we were late today. We had a kind of poopy incident, ” she said.

I stopped cold and turned to face her.

“Was it my son?” I asked. My eyes felt as big as plates. My breath stopped.

“Oh, no,” she smiled. “It was another student.”

I exhaled and my smile returned. Relief coursed through me. He was wearing his overalls. They were still working. We were still one step ahead of him. For now.

“YES!!!!!!” I fist-pumped the air. The bus driver laughed. We said our goodbyes and I followed my son to our front door, the fall leaves gently coming down around us, the sun bright.

Today was a good day. Today, it wasn’t my kid.

Why I have More and Less Patience Since Becoming A Special Needs Parent

I am getting older. Of this, there is no doubt. My skin has more wrinkles and my hair needs dye instead of just doing hair dye for fun and fashion. The amount of candles on my cake could start a fire and certainly will set off an alarm if we include them all. No doubt, things are changing. And not just physical things.

My personality is shifting and changing as well. I believe that this is part of gaining maturity (hopefully) and life experience. I see situations coming now and can avoid mistakes that I have made in the past if I pay attention. I aspire to do this more. Sometimes I am successful. Sometimes I fail.

One of the things that I have really noticed, a huge change, is having patience. As a special needs parent, my eyes have been opened to both the struggles and the triumphs of those that are differently abled. I am SO MUCH MORE PATIENT with folks (special needs or not) that are truly doing their best, working hard, asking for help, getting it done no matter at what rate. Achievement has been broken down from the big picture into the microsteps that it takes to get there. Every single step forward is won by hard work, trying and failing, persisting and loving and supporting. It’s just that typical folks might progress at a faster rate and the microsteps might be bunched together and less visible. The atypical folks? Its easier to see the microsteps because maybe they are happening very slowly.

I like this about myself. I like being more patient. I like understanding that the process is different for everyone but no less important.

But, while I have become so much more patient in this regard, I am SO MUCH LESS PATIENT in other ways. I have always been troubled by people who don’t do their jobs well because they just don’t care. If you are new, having issues but working to resolve them, or if you just made a mistake but are willing to fix it, this is absolutely fine. But if you don’t want to do the work, don’t take the job. Or, at the very least, stay out of my path. I can’t stand this. And now, more than ever, I don’t have time to deal with it.

Think about this – every parent that has a special needs child is exhausted, overworked and shelling out money for all of the extras that go along with this type of parenting. They have to figure out where that money is going to come from to buy the medications, special foods, special stroller or wheelchair, ramps for the house, adaptive clothing, g-tube, oxygen tank, canes, crutches, special shoes, a car big enough to tote everything and more. They probably have to work. They have to raise the rest of the family. They can’t get sick – ever. They feel like they can never die. And most of these parents are some of the nicest people you would ever meet, except you probably won’t ever meet them, because it’s really hard for them to get out of the house unless they are going to the doctor, therapist, school and back home again.

So, when this person, so completely over-extended, runs out to purchase something, orders something or makes any kind of transaction, they need it to go smoothly. They have already figured out where to get the money to do the transaction, they have made arrangements to run the errand (a sometimes Herculean effort), they have shown up. And they deserve what everyone deserves when purchasing a product or a service – a timely, pleasant transaction, with the proper product or service given

Let me speak on behalf of special needs parents everywhere – WE DON’T HAVE TIME FOR PEOPLE’S NONSENSE ANYMORE. Please don’t misunderstand me; this does not include folks trying their best. Going back to the thoughts about my maturity – I have realized as I have aged that I don’t have to put up with everything that I thought I had to put up with. Even trade for the wrinkles? Eh, not so much. But good to know nonetheless.

If you are not a special needs parent you will never know what it really takes for us to honor our amazing children and get the job done right. So, please. Step up or get out of our way. We don’t have time. We are raising angels.

Special Needs Assault and Disregard

I just came home from a field trip with my neurotypical daughter. On this field trip, not only did I observe blatant disregard for the laws and needs of people with disabilities, I actually witnessed an assault on a special needs child in my daughter’s class.

I am angry. My heart is still racing even though its a couple of hours later, my face still feels hot to the touch. I keep imagining what it would have been like if it were my son that was assaulted. Would anyone have spoken up for him? Would anyone have protected him? I want to cry.

Our field trip was to a public heritage museum. We were in a group of thirteen students, several parents and the student teacher that is with my daughter’s third grade class this year. The special needs student in our group, we’ll call him Ben, is autistic, highly intelligent, and has observable differences in body language, facial expression and interaction choices. It is not uncommon for Ben to put his face close to another student’s face, touch random people’s clothing, ask personal questions and move around a lot. ALL of his classmates and most of the school know him, accept him and let him do what he needs to do without question. Occasionally, you might hear a student tell him to stop doing something if it’s bothering them but, in general, he is one of them and they care for him. They care about him.

The museum is both in and outdoors and we went from building to building, meeting up with new docents in each place. When we got to the old time barbershop, the boys were told to enter first and line up to the left. The girls then entered and were invited to sit on a bench to the right. The docent, an older male in his late sixties or perhaps 70, explained that in the old days women and girls were always invited to sit and if there were not enough seats, men stood. He went on to explain that he expected the students to listen to him as he spoke and to raise their hands and wait to be called on if they wanted to speak. He was gruff, almost insulting in his interaction. He began to speak.

Ben was moving around in the boy’s group, near the docent. He was talking quietly. His arms were waving around a bit. This seemed to bother none of his classmated. It was just Ben. That’s what he does. The docent reached out, grabbed Ben by the collar of his jacket, yanked him forward so that his face was right in Ben’s face and yelled at Ben to stop. We were all shocked. Ben was scared. The student teacher went to him and led him away. My husband, who was standing by the door and knew Ben, invited him outside and kept him out there for the next few minutes, comforting him as the man finished his speech about the barbershop. I looked around and the parents and I were eyeballing each other, thinking, “Did that really just happen?” The students looked scared, perhaps worried that he would do something to them as well. I crossed the room and went outside near my husband and Ben. My husband was furious. We have a special needs son and we are strong advocates for him and anyone in the special needs community. Even if Ben hadn’t been special needs, there was no way this behavior was OK but because Ben is differently abled and even less able to speak up for himself, it felt even worse. I saw red. I told my husband that when the group moved on, I was going to speak with this man.

The group left and I approached him. There was no one else in the room. I leaned in to talk quietly and said, “I just wanted to let you know that the boy whose collar you grabbed and yanked is special needs.”

This man responded with disregard, “Well, he needs to learn somehow.”

I was disgusted! I told him, “It is absolutely NOT OK for you to put your hands on any of our students.”

The man smiled at me and said in a most sarcastic tone, “I am so glad you were here with us today, ma’am. Thank you for visiting and have a nice day.”

I lost it. I should have kept my temper. I wish I would have handled it with more grace. As I turned away to leave, I said, “Asshole.”

He called out to me, “Ma’am, what did you just say?”

I turned and looked him in the eye. “Asshole.”

He looked angry. “Ma’am you just verbally assaulted me.” I swear, this just happened today. You can probably tell from all the “ma’am’s” that I live in the south. He was bothered that I verbally assaulted him? Are you kidding me, buddy?

I replied with, “Yes, I did. And you just physically assaulted our student and that’s not OK with me.” No, I don’t work at the school. I was a teacher for fifteen years and I guess in my mind, it is still ‘our student.’

I turned and left. I went to find Ben. The student teacher had him and my daughter was well taken care of. This wasn’t over. My husband and I went to find management.

The manager was a woman of at least 75 years old who was wearing early 1900’s period dress and had obviously never had an angry New Yorker approach her before. When I relayed what happened, her eyes widened and she said, “Oh, my, that’s terrible! I can’t believe that he did that.”

I looked her straight in the eye and said, “What are you going to do about it?”

She said, “Well, I want to apologize to you.”

I said, “That’s not enough.”

I thought she was going to have a heart attack. She replied with, “What would you like me to do?”

“I want that man to apologize to Ben. And I want him to apologize to me. I also don’t think he needs to work here anymore.” Remember, he was a docent, a volunteer. No salary loss but no way should he have access to kids.

“Oh, honey, oh, sweetie, calm down.”

“No, darling, I don’t want to calm down. This man needs to apologize. NOW.”

As we walked with her back to the barbershop, I also explained to this woman, the PRESIDENT OF THE MUSEUM, that her facility was not ADA (Americans with Disabilities Act) compliant. Another student, who used a wheelchair, had two adults who were forced to carry her backwards down six wooden stairs to exit one building. Every building had steps and not a single one had a ramp. She told me that she had let the school know that they did not have disability access and the family said that they were fine with that. I told her that the family wasn’t fine with that, they didn’t have a choice and wanted their daughter to be able to go on the field trip just like everyone else. Also, whether or not the family was OK with it, the museum is still non-compliant. This was the law. She looked distressed, and said, “I guess I should have just called the family and told them not to come.”

I just couldn’t believe the ignorance, the lack of caring, the lack of inclusion. So, what, all “special people,” should just stay home?

“You CAN’T DO THAT. It’s the law. Whether the family says that they are OK with this or not, you are by law, legally required, as a public museum, to make accomodations for access for people with disabilities.”

Well, she said she didn’t know that!!! That when she opened the place in the 1970s she was told it was fine as it was.

I said, “I’m telling you now, you better look up the law because you are out of compliance, and you need to fix it. I’m going to come back and check,” (Yes, I realize I have no power and no badge, but at least I could report them).

By now, this was a VERY nervous woman. We approached the barber shop. She went in and got the man as I went back toward our group to see Ben. The classroom teacher had either been texted or called by the student teacher (very smart move) and was with him. I went up to Ben and said, “Ben, the man from the barbershop wants to tell you that he’s sorry.” Ben looked unsettled and was leaning against his teacher, his bottom sort of sticking out toward her, a familiar pose to me. This is what my son does when he doesn’t want to move. The president of the museum brought the man over and they stopped about six feet away. I stared at him angrily. He tried to maintain eye contact with me and finally just looked down. They called out for Ben to come to them. Ben wouldn’t move. After three requests I finally piped up, angrily, “You need to go over to HIM.”

They approached. The man got down to Ben’s eye level and said he was very sorry that he had grabbed him and yanked him and he wouldn’t do it again. Ben asked, “Are you the barbershop?”

The man said, “Yes, I am the man from the barbershop.”

“You aren’t going to do it again?” Ben asked.

“No, I’m not going to do it again,” the man said.

Ben didn’t reply. He burrowed into his teacher’s body. The man stood up. The president said that he also needed to apologize to me.

“I’m not going to apologize to her. I didn’t do anything to her,” the man was adamant.

I stepped closer. “You offended me. You physically assaulted a special needs child. Now, you can apologize to me, or I can call the police right now and tell them that you assaulted a child. PICK ONE.”

“O-KAY, I’m SORRY.” This was said with attitude.

I leaned in, looked him in the eye and said his own words right back at him, with the same sarcastic tone. “I am SO GLAD that you were here today. Thank you for being here. Have a NICE DAY.”

I turned and went to find my daughter.

During our picnic lunch the president was walking from person to person getting information from the teacher of the student in the wheelchair, asking others what they saw and heard. She also took my personal information and I got the man’s name. She said that he would never be allowed to be a docent there again. I don’t know if that’s true but that’s what she said.

After we left we went back to school, had a meeting with the principal and shared our experience. I told her to offer our contact information to Ben’s family in case they had questions or needed our support.

I am very glad that the Americans With Disabilities Act exists. It is our job as parents of these incredible angels to make sure that it is adhered to. If no one had spoken up, nothing would have been done. This man would feel that he could put his hands on children he doesn’t even know, special needs or not. People with physical disabilities would not be able to venture out with their walking peers to explore the world.

I need to control my temper better.

But I was right.

I am tired.

Fears of Being a Bitch -Advocating for a Special Needs Child

Merriam Webster defines the word BITCH in two important ways:
As a noun: often offensive – a malicious, spiteful or overbearing woman
and
As a verb: to complain of or about

I read an article about a woman who was worried about being perceived as a bitch when asking for services for her child. Here it is for you to check out.  http://coloradomoms.com/specialneeds/how-to-advocate-for-your-child-without-being-a-bitch/

When I read the article, the first thing that gripped me about the title is, “Why would I fear being a bitch?” Why would advocating for my child and making sure that he gets what he needs and deserves give me a derogatory label? If a man were advocating, he would NEVER be called a bitch. So why is this a worry for women, and, apparently, special needs moms?

When dealing with schools, therapists, Early Childhood Intervention, and anyone else who provides services to your child, the more vocal you are as your child’s advocate, the greater the chance that your child will get the appropriate amount and level of services that they need. As a general education classroom teacher for fifteen years (general education and, now, special education certified) and as a teacher who sat in on loads of IEPS and ARDS, I have seen, repeatedly, that the advocate that keeps showing up, keeps being verbal and keeps pushing the boundaries, gets more and better quality services.

Case in point – my son was getting what they were calling “small group speech.” They had SEVEN kids in his special needs class around a table having a speech lesson a couple of times a week for 20-30 minutes. That is beyond a small group, even in general education. My son needs one-on-one interaction. He, like his classmates were at that time, is low functioning. If there are 6 other kids in the group, he may or may not be paying attention AT ALL to the lesson. He needs constant one-on-one interaction to focus on the task at hand. It’s not that he shouldn’t also attend these group lessons, but I wanted him to have BOTH.

Disclaimer – Most of the people I have come into contact with in IEP meetings are fabulous, want you to have what your child needs and do everything they can to make it happen. These are amazing folks! But the following is about someone who just didn’t want to get on board.

When I brought this up to the IEP committee, I got a negative response. The speech teacher didn’t want to do daily short lessons individually with my son. It didn’t “fit into her schedule.” She was “overwhelmed with students on her list, too many.” So they wouldn’t have time to do both small group and individualized speech with my son.

Now, if I had accepted this answer, that would have been it. However, because I know the law and my rights as a special needs parent, I pressed on.

Below is a list of who makes up the IEP (Individualized Education Program) Team, taken from this website, which clearly states the IDEA rules and regulations (and the link to it):
http://uscode.house.gov/view.xhtml?path=/prelim@title20/chapter33&edition=prelim

Individualized Education Program Team
The term “individualized education program team” or “IEP Team” means a group of individuals composed of—
(i) the parents of a child with a disability;
(ii) not less than 1 regular education teacher of such child (if the child is, or may be, participating in the regular education environment);
(iii) not less than 1 special education teacher, or where appropriate, not less than 1 special education provider of such child;
(iv) a representative of the local educational agency who—
(I) is qualified to provide, or supervise the provision of, specially designed instruction to meet the unique needs of children with disabilities;
(II) is knowledgeable about the general education curriculum; and
(III) is knowledgeable about the availability of resources of the local educational agency;
(v) an individual who can interpret the instructional implications of evaluation results, who may be a member of the team described in clauses (ii) through (vi);
(vi) at the discretion of the parent or the agency, other individuals who have knowledge or special expertise regarding the child, including related services personnel as appropriate; and
(vii) whenever appropriate, the child with a disability.

Note the number one slot – you. Without you, there is no meeting (unless you waive your right to be there). All of the other people are experts in something. YOU ARE, TOO. You are the expert on your child.

I have never, and I mean NEVER, observed any of the other experts on this list being called a bitch (assuming that they were female) when they pressed hard on what the student’s needs were. When advocating for a student, these educators are classified as, “doing their job to the best of their ability to make sure the student gets what they need.” Of course, there are some on the team that don’t want to go that extra mile. But that doesn’t happen on my watch. It shouldn’t on yours either.

Please read the laws. Because it is to your advantage to know that a speech pathologist cannot decline a request of individualized speech based on “not having time.” It is, in fact, illegal, according to IDEA. You better believe that not only did I tell her so, I gave her a copy of the law and everyone else at the table received a copy as well. You see, the school is required to hire extra people to fulfill these services if the therapist has too much on their plate. They know this. But they count on the fact that I don’t.

The room got very quiet. In fact, silent.

The speech pathologist replied that what I wanted was statistically shown not to be a better method for a special needs child taking speech. She showed me a textbook to back up her point.

I countered with the fact that not one, NOT ONE, of the children in the study that the textbook was based on was my son. That I am the expert on my child (as schools always tell you until you want something that they don’t want to give you).

Did I win? You bet. Check mate, my friend. My son got the extra services he needed and it helped him to progress.

If I was a man, I might be described as strong, forceful, determined, a force to be reckoned with, business-like, a good father, someone who cares about the needs of their special needs son.

I am a woman.

So, why, because I have a vagina, does this make me a BITCH?

This doesn’t make me a “malicious, spiteful, overbearing woman.” This doesn’t make me a person who just “complains.”

On some level, this makes me a superhero. For my son. It makes you a superhero for your child too. And there is absolutely no reason why we should apologize for that.