Month: November 2018

Special Needs Families Need to Go Out Sometimes – This REALLY Helped

We were stuck in the house and chained to the T.V.

There was a time when our family couldn’t go anywhere.  Ever.  Our son was special needs, prone to meltdowns, anxiety, tantrums, you name it.  There was also a time when we would put on T.V. for him (educational programs… ok, and the occasional not that educational program but mostly educational) and have to ENDLESSLY change the channel.  As in every 20 seconds.  Or rewind the same 30 second snippet of a show – a hundred times.  That is NOT an exaggeration.  

Imagine our surprise when BOTH of these problems were solved with one gift.  

The Game Changer

Grandpa bought our son (and our daughter) this amazing Lenovo tablet.  After a couple of months (yes, it takes that long and sometimes longer) with hand over hand assistance, our son was able to navigate this tablet BY HIMSELF.  What did this mean for us as parents?  We could stop changing the channel!  We could go to the bathroom!  And could get up and get a cup of coffee!  We DIDN’T have to watch the same snippet of Little Einsteins over and over and over (I still hear it in my head – “We’re going on a trip in our favorite rocket ship!”). It was a turning point.

The next incredible event was that we discovered that the tablet also let us leave the house.  Because we are older parents, less tech savvy than some, it took us a while to figure this out (because where would we find wifi?).  Eventually we discovered that even in our small, country town there are some places out there with free wifi (Yes, I have been living under a rock.  Remember, we haven’t left the house other than for school and therapy for years).  We attempted outings with great success.  When our son started to feel overwhelmed he could sit in his stroller and we could hand him his tablet.  This distracted him and allowed us to become part of the world again.

No, we don’t want him to be a robot.  Yes, he probably spends too much time on his tablet (STILL only educational stuff).  But he is also learning concepts and having them reinforced every time he uses it.  And we get to take a deep breath of fresh air OUTSIDE of the house.  Win, win.

We Tried Hard to Destroy It – NOPE!

Now, for the best part.  We got this Lenovo Tablet FOUR YEARS AGO.  We have two, one for each child and they have been put through heck.  They have fallen, been thrown, been sat on, had food dropped on them, gotten wet, traveled through different states and more.  THIS TABLET ROCKS.  We didn’t purchase cases.  We didn’t purchase screen protectors.  Yes, the screens have cracked (after the third year) and they STILL work well.  But they are finally about to die and we are going to purchase the exact same thing again.  And, now, it’s cheaper!

We are going to add on the case and the screen protector.  Maybe they’ll last through the abuse for five years this time!

Get It Here

Check out the low price!  Four years ago Grandpa paid about a hundred dollars more (totally worth every penny) and now they have it for $179.99.  So excited!!!

The case.  Why didn’t we buy a case?  Did I mention we were older parents and not as tech savvy?  Still… For $12.49, you bet we are getting it this time.

Our screens cracked after three years.  For $8.99 it may never crack!  We are getting this too.  I would have gotten it the first time.  Who knew?

I have also discovered (welcome to the party, I’m late!) that if you want to go someplace and they don’t have free wifi, you can bring your own.  You can buy a mobile hotspot.  Take it with you.  No wifi?  Turn it on, it appears as a choice on the tablet, connect and go.  I looked for a great deal but to be honest, you can buy one much cheaper refurbished and it will be fine.  We have an AT&T Velocity.  

Our son is low functioning and rarely wants to participate with others.  We have successfully taken him to restaurants, outdoor events, stores and other people’s houses. Even Disney World!  By the way, see my post about how I am modeling our life on our trip to Disney below: 

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

Oh, and school events.  Isn’t it great when you take your special needs child to a school event for their big sister and they have a wild meltdown when the focus is supposed to be on their sibling?  Good times, my friend.  THIS… IS… A… GAME… CHANGER…

The holidays are coming.  Have or know a special needs child who could benefit from this?  Get busy!

What item has been a game changer for you?  Please share in the comments below.

Oh, by the way, I am an Amazon Affiliate.  If you purchase through my page I may get a small percentage.  This helps me to continue creating helpful articles on this blog while letting me be a stay at home mom to my special needs son.  Thank you for considering it.

Teaching the Special Needs Teacher to Think Outside the Box – Edible Manipulatives

There are some incredible special education teachers out there.  I taught general education (pre-K through 2nd) for fifteen years and some of the teachers I most admired were these.  The wild amount of stress they are under, the boatload of paperwork and individualizing everything for every student is mind boggling.  But sometimes, they are so loaded down that they can’t think outside the box.  Case in point – recently, my son’s teacher told me that they don’t use playdough with him in the classroom.  Why?  He eats it.  

My son probably wouldn’t care whether he got to play with playdough or not.  However, since he is weak in OT (occupational therapy, activities that use his hands) it is important to give him every opportunity to do this kind of work.  That’s where I come in.  Think his mama is going to let him miss out?  No way!  Let’s make some edible manipulatives.

For those new to the scene, a manipulative is anything that you can use with your hands to learn concepts in a developmentally appropriate way. This applies to typical or atypical children (so steal for your typical kids!).  Take a look at the National Association for the Education of Young Children Website to get a better idea of why playdough and other manipulatives are so important. Here’s the link:

https://www.naeyc.org/our-work/families/playdough-power

You can, of course, make these and use them at home but they really are too good not to share.

The first one will be, of course, the playdough.  The following recipe has been around for ages.  I have no idea who first created it or I would attribute it to them.  If you know, let me know so I can give credit where it is due.  It certainly wasn’t created by me.  This recipe is cheap, cooks up quickly and although it doesn’t taste good, it is completely edible.

Cooked Playdough
1 cup flour
1/2 cup salt
2 tsp. cream of tartar (find this with spices at the store)
1 cup water
2 tbsp. oil
1 tsp. food coloring
Combine flour, salt and cream of tartar in a large saucepan. Gradually stir in the water, the oil and the food coloring. Cook over medium to high heat stirring constantly until a ball forms. Remove from heat, allow to cool a bit and then knead it until smooth. You can store this in an airtight container but I find that a Ziplock bag works just fine.
Other options – add a packet of UNSWEETENED KOOL-AID OR UNSWEETENED COCOA POWDER for amazing scented dough; double or triple the recipe so the whole class can use it
*Note: This playdough lasts for up to SIX MONTHS if you keep it in the container or bag when not in use. It is the softest, best playdough ever!!!

Now, how would it be if I walked into my son’s classroom with a big bag of this edible playdough and set it down on her desk and said something like, “I know how insanely busy you are so since my son isn’t able to use the regular playdough, I brought this for the whole class to use.” How about you looking like a superstar special needs parent for a couple of dollars and about 20 minutes of work? (I advise you to make extra, Superstar, because you are going to want to play with it too)

Let’s move right on to the next edible manipulative.  Want your child to fingerpaint in the classroom but they don’t allow it because your child eats the paint?  Problem solved.

Cool Whip Fingerpaint
1 tub Cool Whip
Food coloring to desired color.
Allow cool whip to defrost in refrigerator. Open. Mix in food coloring until desired color is reached. You can also spoon into individual bowls and make different colors.

This, of course, will taste way better than the playdough, although the goal is not to eat it.  It can be used to squish between fingers, paint on paper, write letters using your fingers or the end of an unsharpened pencil or marker with the cap on.  If the child doesn’t like to get his hands dirty, spoon some in a Ziplock, seal, tape the zipper part down on the desk and invite the child to squish through the bag.  Another instance where thinking outside the box turns can’t into can.

Bring the teacher this recipe and, perhaps, the two ingredients.  She may put down her pounds of data just to give you a hug.

This next one is a replacement for bead stringing.  A great way to develop fine motor skills is to have the child string larger beads onto laces.  Sometimes the child just isn’t interested in doing it because it is difficult for them due to weak fine motor skills (that’s hand work for the newbies).  Also, big clunky wooden beads, so what?  So, let’s replace them.  What can we string?

I have seen cereal work with mixed results.  Many kids enjoy Fruit Loops or Cheerios.  The problem is that some may not be ready to string something so small.  So you could offer this as an option but maybe your child needs to start with something bigger.  Enter the Gummy Ring.

What is a gummy ring?  It is like a gummy bear but in the shape of a ring.  The hole is considerably larger than the holes found in cereal and this makes it easier to string.  Also, they are delightfully squishy to hold. After they string them, they can wear them like necklaces, suck on the rings and make a delicious mess, all in the name of improving hand coordination. Does your kid need to work on this skill?  Bring a bag of gummy rings and either some yarn or laces to the classroom. Show the teacher the outside the box alternative to beads.  Can you say best student parent ever?

Finally, when you very sweetly (please be nice about it while you lead the Special Ed teacher to think outside the box) offer the instructions and/or supplies for these projects, remind her to take pictures. While the memories are lovely, gently remind the teacher that they can also be used as proof of a performance assessment.  This is when the teacher can gather data to form either grades or show progress on the IEP.  

What are some ways that you think outside the box when it comes to your child?  Please share in the comments below.

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.