Category: At Home

I was receiving a daily report from my son’s school that told me next to nothing.  It had the same revolving 3-6 phrases on it.  These included Needs More Diapers, Needs More Wipes, Cried Today, Refused to Work Today and Had Accident Today.  And, usually circled at the top, Good Choices.

My son, Kai,  is six years old and special needs.  He is low functioning and mostly non-verbal.  When he gets off the bus at the end of the day, I get a smile and a kiss.  We walk into the house, he takes off his shoes and socks, I help him take off his jacket and he goes straight for his tablet.  This is our routine every single day.  He might signal that he wants cookies or milk by taking my hand and tugging it until I follow him to where these things are kept.  Then, I might ask him, “Kai, do you want cookies?”  And he might say, “Yeah.”  If he is feeling particularly verbal, I might say, “What does Kai need?” and he might say, “kies.”  And this is a fairly new accomplishment for us in terms of conversation.  So I am left wondering when he comes home; what happened for the last eight hours?  

The report left us completely in the dark.  If he refused to work, what did he do instead?  What work was presented that he refused to do?  Was it appropriate?  Is there something we could be doing at home to help in this regard?  Did he seem tired? If I ask Kai these questions I might get a smile or a kiss.  Or he may position my hands so that when he pushes on one I will clap.  No answers there.

I could have asked them to create a different daily report but then they still would have been guessing at what information I wanted to see at the end of each day.  So I decided to make my own daily report.  On my Facebook page I periodically post an update about Kai’s achievements that I call The Kai Report. I decided to name it that.  I made it pretty and left plenty of room in the margins for the teacher to add whatever notes she wished.  Here is what the report looks like:

My husband and I had a meeting this past Monday with the Principal/Instructional Specialist at Kai’s school (usually this would be two people but we live in the country and the school is small).  I brought her a copy of the daily report I usually get and the new one that I made so she could see the difference.  She loved what I made and said it was absolutely no problem to use it.  I started receiving it in his backpack the very same day.  

If you want to receive different information on the daily report you receive, TELL SOMEONE.  It is OK to ask for this.  A lot of parents are intimidated when it comes to making requests but there is no way for the teacher or school to know what you need unless you ASK FOR IT.  If you feel capable of making a pretty report, go right ahead.  Not your thing?  Make a list of what you want to know about.  Be sure to give it to them in writing or e-mail it to them.  They will work it out, I promise.

It’s been two days since I started receiving the report I created.  Today when Kai came home from school I found out that he was stacking pool noodle pieces and was missing the yogurt that wasn’t in his lunch box (we ran out).  I also know that he sat on the potty for three minutes and produced nothing.  And that he was working on 1 to 1 correspondence in math.  Suddenly, the eight hours he was away from home are not big blanks of time for me.  And that makes me feel happier, more informed and more content that what is happening during his day is appropriate for him.  I know this because I have it in writing.

What have you done that was out of your comfort zone yet gave you a really good result?  Please share in the comments below.

Our son is six years-old and is special needs. One of his issues is Sensory Processing Disorder, or SPD. He is affected in the area of the Gustatory System (and also other areas), which is simply in the area of taste. For some very well written information, check out this article about it, below:

https://nspt4kids.com/parenting/understanding-sensory-processing-disorder-the-gustatory-system/

A not-so-fun side effect of having a limited diet that consists of mostly pureed foods is that our son has between 6-10 bowels movements a day. Add in his love of drinking milk and it becomes a never ending round of poop and pee accidents.

When you think of the cost of diapers, this is a messy, expensive problem. Do you know what happens when that amount of poop and pee come together? LOTS OF ACCIDENTS. The diapers leak. Endless changing. Endless laundry. We were even having accidents just going from our living room out to the school bus in the morning. The diapers shifted. They leaked. (By the way, did you know that if you have a special needs child on Medicaid, once they get beyond a certain age, Medicaid will pay to have diapers and wipes shipped to you monthly at no cost to you? Ask your pediatrician about this. It can be a financial lifesaver.)

I have been changing diapers every single day for almost 9 YEARS. Even though my son is only 6, my daughter is two years older than my son. They will soon be nine and seven years old. So, I think at this point, I can say I have some experience in the diaper changing area.  And I was struggling.

Our son’s amazing school principal called (he is at a small all special needs campus) and told us about a diaper trick that is a life saver. I was resistant because I thought we would be using double the amount of diapers (which could be double the cost). At first I thought she was nuts but when I tried it, I was amazed at how much easier my life was. Here’s the trick:

1. Put on two diapers (we use pull-ups). One on top of the other. Most of the time, this prevents leaks or poop accidents. Fancy, right? No? See step two.
2. When it is time to change the diaper, if no pee or poop has gotten on the outside one, take it off and hang on to it. Change the inside diaper, clean up as usual. Then PUT THE OLD (CLEAN) OUTSIDE DIAPER BACK ON AS THE INSIDE DIAPER. And add another new diaper on top.

Say goodbye to a huge amount of accidents. Yes, I am using a few more diapers but not double as I first envisioned. The double layer somehow keeps the inside diaper in position better and prevents leaks. So even if a big event happens, often the outside diaper just holds the inside diaper in place and it (the outside diaper) stays clean. If I factor in the time and stress of fixing the accidents plus all of the extra laundry (hello 3-5 outfits a day), I think I’m at least breaking even.

If you are one of those brilliant caregivers that has it all together and knew about this, all I can say is that when I grow up, I want to be you. I had NO IDEA about this trick and it has saved me countless time, energy, stress and clean up. Try it!

What tricks do you use at home to simplify your life? Please share in the comments below.

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I am an Amazon Affiliate. If you purchase this product through the link above I may receive a small commission which in no way affects your price. This helps me to continue to support and share information with special needs families while staying at home with my son. Whether you choose to purchase or not, thank you so much for your support!

My son is 6 years old and is special needs. He has Autism, PVL (periventricular leukomalacia), Duplicate Chromosome 16, Sensory Processing Disorder and more. He is developing at his own rate.

PVL means that he has damaged white brain matter. His neurons misfire. So from a learning standpoint, he needs to think through a task first, step by step. He needs hand over hand guidance to do the task. Then he needs to do the task. This process needs to be repeated a COUPLE OF HUNDRED times. And then his brain somehow locks it in. After that, the task becomes “natural.”

Developmentally, my son’s age ranges in different educational categories between 12 – 30 months of age. He will be 7 in February, so he is currently about 81 months old. That is a huge disparity. But it absolutely doesn’t matter in his world, or in ours. We are on his time frame and that is where we will remain.

He achieved a milestone this past week. I don’t know if I would have realized how important this milestone was if I hadn’t been a teacher and studied child development as part of my Master’s Degree in education. My son achieved object permanence.

What is object permanence?

My son likes to play with his tablet. We have two, one for him and one for his neurotypical older sister. He likes to go to the counter where the tablets charge, put down the one he is using and unplug the other one and take off with it. We have tried to deter him but nothing worked. Until one day, his dad took a kitchen towel and placed it over the tablet that was charging. The next time my son came up to the counter, he saw the towel in the exact same place where the tablet usually was. He left it and walked away. On other days, my son saw his dad cover the tablet with the towel. Still, he walked away when seeing only the towel. It was as if the tablet did not exist because it was covered.

For my son, the covered tablet really did not exist.

Back in the day there was a psychologist named Jean Piaget who studied child development and created the “Theory of Cognitive Development.” You can look at this research here:

https://www.verywellmind.com/what-is-object-permanence-2795405

Piaget stated that a child does not reach object permanence until 18-24 months (later, others stated that it may happen even earlier for neurotypical children). What this means is that until the child’s brain develops to the point where they recognize otherwise, for them the object is, “out of sight, out of mind.” It simply doesn’t exist.

Guess what happened?

The other day my son went to the counter and saw the towel. He stood there looking at it, thought about it and then whipped the towel away to reveal the tablet. He remembered that it was there, even though it was hidden. Realizing this is called “Representational Thought.” He could now form a mental representation of the tablet. And because he could now imagine something symbolically (the tablet), he was able to understand not only that it was there but that it exists when he can’t see it.

This is HUGE.

What appears to be a funny moment of, wow, we sure can’t trick you anymore, is actually a developmental milestone for my son’s brain. I want to dance and sing and celebrate and…

Hold on, I am suddenly pissed off…

Now, I have been thinking about the work my son is doing at school for a while and wondering about how developmentally appropriate it is for him. He attends an entire special needs campus, no inclusion in mainstream, which is exactly what he needs. But I have been seeing worksheets coming home. The worksheets have notes on them such as HOH (he did it with the teacher’s hand over his, or hand over hand), Refused to Work and Cried the Entire Time. I already have an apointment to speak with the Instructional Specialist about a number of things that I would like adjusted. And to be completely honest, you should know that we are very happy with my son’s placement in general. Every single person who cares for him at the school is amazing and loves on him.

But…

Why, oh, WHY IS MY SON, WHO JUST REACHED PIAGET’S MILESTONE OF OBJECT PERMANENCE DOING ABSTRACT CONCEPT WORK LIKE WORKSHEETS???????????????

Developmentally, he is about 2 years old. No teacher should give a two year old a worksheet. 2 year olds should be using hands-on manipulatives and learning through play.

Who am I to question THE TEACHER?

I’m his mother. I’m his advocate. I’m his first teacher. And, yes, while I do have a Master’s in Education, am a highly qualified, certified teacher (not working in the field, raising my incredible son), and I am licensed in both general education and special education, I had to look up Piaget on the internet because I couldn’t quite remember the details from my study years ago.

If I can look it up on the internet, so can you.

If it doesn’t feel right, if your child isn’t thriving with how it’s being done, guess what? You can change it. You are the number one most important member of the IEP (Individualized Education Program) team. Get in there!

I have my thoughts in order. I know what I want to say when we meet. I have a list of concerns and satisfactory outcomes that I am striving for. I am going back to celebrating! Oh, and trying to figure out how to outsmart my amazing, beautiful son because the tablet is fair game to be stolen again.

Speak up. If it doesn’t feel right, it isn’t right.

What issues have you spoken up about? Please tell about it in the comments section below.

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I am an Amazon Affiliate. If you purchase this product through the link above I may receive a small commission which in no way affects your price. This helps me to continue to support and share information with special needs families while staying at home with my son. Whether you choose to purchase or not, thank you so much for your support!

One of the things that can happen when you are a special needs parent is that you can become bogged down in the day to day problems. Stress over not meeting milestones, getting a diagnosis, obtaining interventions, school, medications, becoming certified in CPR so that you can save your child when they choke while eating… the list goes on and on. Not to mention behavior issues. It can feel overwhelming, isolating and depressing.

To combat this, it is important to create things to look forward to for yourself. Build them into your day, your week, your month and your year. Reward yourself. Think small. Think big. Think cheap. Think splurge. Wherever you are in your finances, your mental state, your amount of time for yourself, this is a plan you can get behind. Check out these ideas!

• Are you a reader? Make sure you always have reading material waiting for you. Buy yourself the latest book. Money tight? Join the library. A weekly or monthly trip there can be something to look forward to if you can get away and the books will be free. Not able to get away right now? If you have an e-reader, you can receive daily e-mails offering up free books. Check out Freebooksy, it keeps me swimming in free books to read.
• Make your morning beverage special (did you think alcohol, first thing? Haha, nope). You want to look forward to it when you wake up in the morning. Buy yourself an adorable mug that makes you smile. Money tight? Get it from the Dollar Tree, they always have cute mugs. Coffee drinker? Make it special with seasonal flavors, tasty syrups, etc. Tea drinker? Buy yourself a tea sampler so you always have something new to try. Feeling so squeezed on time with your child that you can barely make anything? Get a coffee maker with a timer so it is already freshly brewed when you get up in the morning. And, if it’s not automated, don’t forget to do your Self Care Breathing while things are dripping or brewing. See my article about Self Care, including that idea, here:

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

• Plan a short outing on a weekly/monthly basis. Go without your child. I know I know, it doesn’t seem possible. If you are parenting as a team, take turns with your partner. No, you won’t be able to go together, but at least you will both have a break and it will give you something to discuss when you are reunited. Go to a movie. Go shopping for yourself. Money tight? Go to a park. Bring one of your free books from the library or an e-reader. Feel like you really can’t leave the house right now? Sit outside while your partner takes over. Then switch. Don’t have a partner? Ask a friend to help. Even 30 minutes can feel like a vacation and you will look forward to it all week/month.

• Find a hobby that you like with no time restraints. I like to crochet. I do it at home. I don’t go to a weekly group (although that would be something to look forward to!) and I do it without a schedule. When I have time, I pick it up. When I don’t have time, I don’t. It is calming, relatively inexpensive and you get beautiful items at the end of a project. Money tight? Buy yarn at goodwill or garage sales or ask around. Lots of times, people are trying to get rid of stuff and will just give it to you. Not into crochet? Knit, build model cars, do puzzles, draw, write, play an instrument, fish. All of these are time flexible, not crazy expensive and give you something to look forward to.

• Plan a trip. Without your child. If you can. Plan a year in advance. Think about how it could work. Investigate respite care, find out who could help you do it. Save up for it. Do it. Don’t feel like you could be far away from your child in case there is an ‘event’? Do it locally. Go to a hotel or a bed and breakfast that will give you fast access to home if you feel you need it. And, check this out. You may have to go home to deal with a situation but if you keep your trip local, you can GO BACK to where you are staying after the situation at home is resolved. I know it might not seem possible, but it is. Money tight? Ask to stay at a friend’s place.

You know how people plan for children’s events and fun activities? Adults seem to stop doing that for themselves, especially special needs parents and caregivers. It’s time to reclaim some fun for yourself. Get creative. It may not look like it used to but it sure will brighten your life, giving you something to look forward to.

How do you create things for yourself in your life so that you have something to look forward to? Please tell about it in the comments below.

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I am an Amazon Affiliate. If you purchase this product through the link above I may receive a small commission which in no way affects your price. This helps me to continue to support and share information with special needs families while staying at home with my son. Whether you choose to purchase or not, thank you so much for your support!

Today I made a mistake. Nothing Earth shattering. But, from the hour long screams and endless crying, it was Earth shattering for my son.

He’s been in the house on his tablet for a couple of days on break. When we moved, our trampoline never got set up. He used to love to go outside and jump. I thought it would help him get some energy out. So my husband called the son-in-law. Sure, he said, come on over. Use our trampoline. We got dressed, turned off the tablet and got in the van.

My son, who’s 6, likes being in the van. He has autism, PVL, Duplicate Chromosome 16, SPD and more. He is low functioning and almost completely non-verbal, although that is starting to change. He babbled contentedly to himself as we drove the five miles to our daughter’s house. Our grandson, ten weeks older than our son, was ready to play and so was our neurotypical daughter, age 8.

We got out of the van. The trampoline is in the front yard. We went right over to it as my daughter went inside to get the grandson. I didn’t think about it. We went to their house to play on the trampoline. So we went directly to the trampoline.

I took off his shoes and helped him inside. It’s been months since he’s jumped and he seemed a little uncertain but then remembered and started to jump and laugh. Then my grandson got in. He started jumping too. He wasn’t near my son. He wasn’t jumping wildly. He was just jumping. Trigger meltdown.

My daughter got in. She tried to soothe him. Nope.

My son climbed out into my arms. He got down and went up the steps to the house. I thought he was trying to find his Daddy who had gone in. He was walking through the house and I called to his Dad, to alert him that our son was in there.

He came out, crying harder. I thought, maybe he wants me in the trampoline with him. I climbed in with him. He was bawling. I sang several songs and the other two chimed in. His distress lessened somewhat. But he was still crying.

Finally, after having been there only twenty minutes, my son was absolutely inconsolable. Daddy and I helped him out of the trampoline. We offered his tablet outside. He took it but still bawled. So we put on shoes and left. I never went into the house.

My son cried his eyes out on the way to the van. He screamed while being buckled in. He kept going on the five miles back home. I tried turning on music which seemed to make it worse (sometimes it helps) and turned it back off.

When we pulled into our driveway, he was still going strong. I helped him out of the van and carried him to the door. He is getting heavy and it’s not easy. When we got into the living room at home, he was unable to stop. He literally melted down to the floor and rolled around, crying hysterically. I removed his shoes while he rolled and got him out of his clothes, ducking as to not get hit in the process. My daughter, who was pulled away from her playdate, wanted my attention but I just couldn’t give it to her and deal with this as well. I redirected her to her Daddy. I led him, red faced, making sounds, heaving breath into our bedroom, where I put him in cozy pajamas, applied lavendar oil to the bottoms of his big toes and feet, his spine and his wrists. I put him into his bed, wrapped his blanket around him and snuggled it up to the front of his neck the way he likes. I handed him a toy laptop that he has played with on and off his whole life. Then I turned off the light. I laid down on my own bed, turned on my book light and e-reader and waited it out.

All told, from start to finish, maybe the meltdown lasted an hour to an hour and a half. I realize that this could be viewed as a blessing, as some children go for hours on end. It is exhausting for the whole family, but especially for my son. I feel so badly for him. It just can’t feel good to go through that.

The entire time, my husband and I tried to figure out what the trigger was. If we know, we can remember to avoid the trigger next time.

This is what we think happened. When we go to our daughter’s house, every time, our son gets out of the van, takes my hand and walks up the front steps to the house. He goes inside, walks around a little and looks at everything, then comes to get his tablet. He has free run of the house. Sometimes he sits in the living room on the couch. Sometimes he stretches out on the coffee table. Often, he goes into one of the bedrooms and closes the door to be alone.

Bingo. We didn’t do what we do. We varied it. Suddenly, the routine was broken.

My son couldn’t handle the change. It overwhelmed him. It was a complete and utter meltdown as he tried to figure out this HUGE change. THIS IS NOT WHAT WE DO.

I blew it. What I should have done was bring him into the house. Get him set up for a while. Let him relax. And then, offered him a trip out to the trampoline.

Next time, I will.

Today, I made a mistake. I am exhausted. And I feel badly, because had I made different choices, my son may not have had to go through that. But you can’t win every time. Today, I lost the special needs parenting game.  Some days you win.  Some days you break even.  And some days you lose.

Tomorrow is a new day.

Have you ever made a mistake that caused an epic meltdown? How did you change it the next time? Please describe in the comments below.

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I am an Amazon Affiliate. If you purchase this product through the link above I may receive a small commission which in no way affects your price. This helps me to continue to support and share information with special needs families while staying at home with my son. Whether you choose to purchase or not, thank you so much for your support!

Last night something happened that made me so angry, I could feel my blood pressure rise. I could feel my face turn red. Like a cartoon character, the red started at the bottom of my head and the more I thought about it, the more it raised up until it reached the top. I could envision my entire head being bright red, shaking and about to burst. Why was I so angry? A relative suggested that I hit my special needs son.

Now, we are not talking about beating him. We are talking about what was called, “stronger discipline.” Spanking. That’ll teach him. Because since I hadn’t “nipped the situation in the bud,” before now and I had “let the situation go on too long,” I needed to “reign it in.” What had we not achieved? Potty training. My son is six. He is still in diapers. Not only was it my fault, but we should hit him. To get him to take potty training seriously.

I was so upset that I sat down and wrote an article about it. It was really more of a rant. I was going to post it to the blog today. Then I cried for a while. My amazing 8 year old neurotypical daughter comforted me. She told me I was the best mommy (I love that girl so much). I then went to bed. But I had a hard night. My son decided that he was done sleeping at 1:30AM and he decided that I was too. No amount of coaxing could change his mind, so I got up at 1:30 for the day. We had MANY hours of quiet time with computers until the alarm went off at 5:45 and we officially started the day. Which consisted of me getting everyone ready and off to where they needed to go and then going back to bed for a couple of hours. But I had promised myself that I would start taking better care of me. So after the “nap,” I worked out for 45 minutes. I burned off some of the anger. My head is a little clearer.

This is what I’ve come up with. THANK GOD THAT MY SON WAS GIVEN TO ME, MY HUSBAND AND OUR AMAZING NUCLEAR FAMILY. I am so thankful that he is ours and we are his. Can you imagine trying to teach a low functioning special needs child to use the potty by spanking?

There are people that believe in spanking as a discipline method. I don’t want to debate this here, I’m just saying, some people do it. The context is usually not following directions, non-compliance or maybe defiance. I have a child that doesn’t understand the concept of what the potty is used for, doesn’t understand reward systems like sticker charts, toys, etc., won’t sit through a book about potty training, and doesn’t view any kind of candy or other food as a reward. He is not interested in aiming for the Cheerios.  He might even reach in to eat them. I have limited potty training options. So, if he doesn’t understand any of that, if I hit him, is the information suddenly going to make sense to him? Is he going to think, oh, you hit me, so that means the poop goes in the potty? I can’t imagine him making that connection. I want to call this idea stupid but what it really is is ignorant. Inexperienced. Violent. And, it might even create an AVERSION to using the potty, something we want to avoid at all costs.

Do I have the solution? Heck, no. Is he still in diapers? He sure is.

So why am I so angry?

It makes me feel alone. It makes me feel misunderstood. It makes me feel that my son is misunderstood. It makes me feel like I need to protect my child from all the people in the world that think a good smack is going to not only fix it, but fix him. Like he is broken. Like he is made of spare parts.

But, when I took the time to get some rest and exercise and process a bit, I realized something big. It was something I already knew but the concept was brought home to me in a huge way. My son is exactly where he is supposed to be. He will get thoughtful, loving care every single day of his life. And I am so, incredibly thankful for that. When I imagine him being raised by someone who would spank him for not using the potty, I want to cry. I am so thankful that he is mine and I am his.

I am choosing to refocus my energy on this. What are you choosing to focus your energy on?

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I am an Amazon Affiliate. If you purchase this product through the link above I may receive a small commission which in no way affects your price. This helps me to continue to support and share information with special needs families while staying at home with my son. Whether you choose to purchase or not, thank you so much for your support!

Thanksgiving is tomorrow. We used to have Thanksgiving at our house every year until my husband ended up with a long term illness, from which he is slowly recovering. When we moved to the country to be closer to family, we gave it up, since he was the one who did all of the cooking.

Our adult daughter (she is my step daughter but I am claiming her) took over last year. It was her first time and she was one cool customer. She created a post-it note system and timed everything so that it all came out perfectly at the same time. Without breaking a sweat. Joking the whole time. Perhaps I really should just refer to her as my step daughter because she sure as heck didn’t get that ability from me (nah).

So last year was our son’s first time doing Thanksgiving at someone else’s house (still family, but not home). He is special needs with developmental delays, autism, cognitive disability, SPD and more (and the most beautiful smile that lights up the world). He was five then. There was a huge gathering in the living room around the T.V. Football in Texas is like a religion. There was a huge spread of food laid out in the kitchen, buffet style. There were people all over the place, plates and cups spread out. Kids running around the house and playing in the separate play room. It was noisy, busy, a bit chaotic. All of the things my son doesn’t like. How were we going to do this well? We didn’t have to worry about others because our extended family is terrific with him. They wouldn’t bat an eye if he had a meltdown. But we also wanted to enjoy the holiday and, even more important, we wanted him to enjoy it too.

Here are the safeguards that we put into place so everyone could enjoy an adaptive Thanksgiving:

1- There was no way that our son was going to spend hours on end surrounded by all of these people, loud television, the busy, toy-strewn playroom or in the bustling kitchen. Big sister was awesome and helped us pick a quiet place where our son could go to be alone. There was a bed in there to rest on, very little in the way of clutter, no items he could hurt himself with and he could let himself in and out as he pleased.

2- We brought his tablet. He was able to sit amongst others, distracted by his activity and therefore less focused on all of the sensory triggers.

3- We brought his own food. Of course, we invited him to try things but he also had his regular meal, in his regular bowl with his regular spoon. And at this stage, it was baby food. Actually, it still is. Had he only been presented with strange holiday tastes and textures, not only would he reject almost all of it, but he would have been hungry. That is never a good idea when you are trying to avoid a meltdown.

4- We brought his blanket. Our son likes anything knitted or crocheted. He drags these types of blankets around at home (I make them expecting them to be destroyed). The blanket soothes him.

5- We brought his own sippy cup and made sure to have milk on hand. It is the only beverage he would drink at that point.

Our son almost never tries a new food. It just so happens that last year was the first year he tried pumpkin pie. He took a bite off of his sister’s fork, tried it a second time and then took her plate away from her. He ended up picking up the whole slice and eating it like an apple. It was one of the best holiday gifts I have ever received! I doubt it would have happened if we had presented him with an entire plate of new and different foods with their new textures in a noisy, crowded place all at the same time.

Little by little, with safeguards put into place, he will adapt to Thanksgiving. Until then, we will adapt Thanksgiving for him.

What safeguards do you put in place to make holidays go more smoothly with your special needs child?

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I am an Amazon Affiliate. If you purchase this product through the link above I may receive a small commission which in no way affects your price. This helps me to continue to support and share information with special needs families while staying at home with my son. Whether you choose to purchase or not, thank you so much for your support!

There are special needs caregivers who have kids that are growing up. Becoming adults. And these beautiful souls are about to age out of public school and all of the services that go with attending it.

Depending on where you live, there may or may not be a plethora of resources for your new adult special needs offspring. Some states have incredible programs. I am hearing from other caregivers that when they look around, they see nothing but a black hole and the sound of crickets chirping.

This can be absolutely terrifying.

There is a lot of pressure put on special needs parents and caregivers. Life is expensive, busy, stressful, time consuming and probably a lot different than they envisioned. They are forced into a situation where they have to think outside the box and problem solve in a way that they may have no prior experience. It’s a lot (not discounting the joy, ever). But you know what I mean, right?

It is difficult to plan ahead when you are pregnant and you suddenly find out through tests, in the birthing room or in the first couple of years that your child has special needs. You slog your way through, barely having time to breathe. There is no way to predict that this will happen. It doesn’t happen to most people so most people won’t prepare in advance before thinking of getting pregnant. I sure didn’t.

Here’s the thing, though. You had no idea that your child would be special needs but you know, with absolute certainty, that you will be the parent of a special needs adult.

Why not plan ahead?

I know, I know, you don’t need ONE MORE THING on your plate. You are exhausted, overwhelmed. Where would you even begin?

Here’s the beauty of the situation – you have LOTS of time if you start early. For example, my son is currently six years old. In Texas, he may stay in school until he is 21 with all of the services that they provide. After the end of the school year in which he turns 21, the services will cease. There are adult services out there and he may or may not be eligible depending on a variety of factors. This means that I have FIFTEEN YEARS to plan how his adult life could go (unless he is able to make these decisions for himself, which would be wonderful).

So, here’s the plan. I am going to envision how I want his life to be (assuming I am the one who is going to plan it). I am going to think about what services, clubs, social events, trips, jobs and activities I want him to have. I am going to think about what resources, therapies, and assistance I think he may want or need. And then I am going to take a look around me and see if it exists near where we live. If it doesn’t, I am going to look around the country and see if it exists anywhere else. Because we could move there if it’s a better fit for my son.

What if what I want for my son doesn’t exist? What if he’s not eligible?

People have this thing that they do that drives me a little nuts. They look at a situation and they say, “Someone should DO something about that!” Guess what? That someone is YOU. The person who sees the void should do something about it. It certainly isn’t going to be taken care of by folks who don’t see the void. Who else is there?

I have FIFTEEN YEARS to make it happen. I am going to look around and see if it already exists. If it doesn’t or I can’t access it, I am going to create it. There are grants, loans, government programs, organizations and many, many resources, all just waiting for people to ask. If I build it and my son decides as an adult that he would like different choices, SOMEONE will want what I build (how dreamy, that he would be able to decide).

Slowly but surely, over fifteen years, I will design and craft the right situation for him. For us. Instead of waiting until he’s turning 21, playing the role of the deer in the headlights and hoping like heck that someone is going to jump in and save us. I have a plan to make a plan to make his adult world a better place.

What’s your plan?

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?

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.