7 Things to Say to Parents of Children with Special Needs

I originally wrote this as a note on Facebook, which not everyone could see, but I think this is appropriate after seeing a post on Facebook from The Autism Society of America which asked, “What do you wish people WOULD say?” linking the following article: http://www.washingtonpost.com/news/parenting/wp/2014/09/15/4-things-parents-of-kids-with-special-needs-wish-you-wouldnt-say/

This in response to a note that has been shared numerous times, first posted by Special Needs Parent Association titled, “7 Things Not to Say to Parents of Kids With Special Needs.”

1. “Aw, your child is so cute.” This was also on the list of what not to say, but only because it was more specific. For example, “Your child is so cute when he tries to talk.” Parents of special needs children are a lot like any other parent. We want to be told that our child is cute. We do not, however, want to hear that it is cute when our child struggles. I mean, is it cute when your child struggles? Or just a bit frustrating? So, when you say, “Your child is cute,” leave it at that. No need for further explanation.

 He is pretty cute, though, right?

2. As a parent of a child with special needs, I often find myself telling someone my child’s diagnosis before they ask because my child can’t talk to them (He has Autism), so the minute I reveal his diagnosis, feel free to ask, “What is Autism? What does that mean for him? Is their a cure?,” etc. I definitely want to answer your questions and want you to be informed.

3. “So, how old is your child?” This is question that you would ask any parent of a “typical” child and is completely and totally welcome. We want you to be interested in our children, especially with questions that you’d ask your friends/relatives/strangers who have “typical” children.

4. “Your child is an inspiration.” I think that parents of children with special needs don’t hear this one often enough. Our children do have to overcome obstacles that “typical” children grasp easily and/or at a much earlier age, so it’s nice to hear that our children inspire you to be a better person and to try harder and not to take your abilities for granted.

This is one of Thatcher’s most recent works of art, and quite frankly, it is inspiring. 

5. “Hey, have you ever heard of this program called “*Something that could potentially help your child*”? This is a great one because as parents of children with special needs, we are always looking for resources of which we were not already aware. But be aware, that this is only okay if you are not giving me medical advice (unless you are a medical professional) and are not trying to pressure me into trying something that most likely will not be useful in my child’s case. For instance, I’d never heard of a program in my state that is for early intervention before the age of 3, but was glad when a relative told me about it, even though it was a bit too late for my son. I was, however, able to pass this information along to other parents of children with special needs.

6. “Is there anything I can do to help?” This is one that I’ve heard numerous parents of children with special needs say they’d like to hear, but have never actually heard it myself. I know that my friends and relatives are concerned and they try their best to help, but I’ve never actually been asked, specifically, what a person can do to help. I’ve thanked my friends and relatives for all the help they do provide, but feel odd asking for help (even if I desperately need it at some points) without being asked if there is something to do. Why? Because if you don’t ask me, I feel like I’m burdening you, even if I’m not and it’s truly something you want to and would be willing to do. Perhaps, instead of giving people like me a lecture on us being too emotional about what you say to us, you should pay attention, especially if you are close to me, to when I seem like I’m under extreme pressure and offer to baby-sit, visit, go out to lunch, etc. Offer to do something that will ease the tension of my workload because lets face it, as the parent of a child with a special need I’m extremely busy and worrisome a lot of the time and could definitely use a pick-me-up and a good friend to discuss my concerns and/or vent to about the issues and challenges that my child and I face.

7. And last on my list, but certainly not least, “Hello. How are you?” And “I’m here to listen.” Many parents of children with special needs feel isolated. I know that you might be uncomfortable with the things my child is doing, but if we were friends before my son’s diagnosis/birth, I still want you to be my friend. I want you to want to understand and want to spend time with my family and me. Now, I will say that I’ve never had an issue with a friend avoiding me because of my own child, but I have to say, this happens to other people far too often. If you want to understand what we are going through, just ask. Don’t avoid us because you are afraid of hurting our feelings because, even if you do accidentally hurt our feelings, we will probably tell you. You will probably learn in the process if you keep an open mind and listen to our concerns.

Disclaimer: In order to write this note, I used a previous note posted by Special Needs Parent Association, mentioned at the beginning of this note as well as the website: http://parentingsquad.com/what-to-say-to-parents-of-children-with-special-needs, but the majority of what is written in this list comes solely from my own personal experiences. Feel free to add to this list of Things To Say as well as share this note.

The Couch of Akward Encounters

It’s been a while since I’ve written and a lot has happened since I’ve logged on last, some of which I cannot share yet, but something interesting has happened recently that I must get off my chest.

First of all, Thatcher is doing okay and continues to get therapy and support both inside and outside of school. He’s currently using a lot of echolia (repeating what he hears on television or what others have said to him) and hand gestures to communicate.

However, that’s not the focus that I want to have for this blog post. I might have mentioned it before; I’m not sure, but I am a part time English instructor at a local university. My husband was recently offered a full time position at the same university (he’d already been working here for three years) as an online lecture with one classroom course. As a result, he was able to acquire his own office. He moved out of the office that we shared last semester into a much nicer office that he no longer has to share with anyone. It even has a couch that just came with the office. Naturally, I was jealous of his couch. I can see the appeal that it would have in attracting students who otherwise might not stop by a professors office, even for a mandatory scheduled conference that is part of their grade.

What I didn’t realize is how much a couch would attract people who were not my students. I mentioned to a custodian that I had been looking for a couch to put in my office and had even checked with the surplus department, but had no luck. She remembered that she’d seen one in an empty office just a few doors down from mine and helped me commandeer it. It was dusty, stained, and smelled funny, but I didn’t care. All of those issues could be fixed and now I had a couch. This semester I am sharing my office with a woman whom I went to graduate school with, so my slightly girly tastes work for her. I decided that I would clean off the dust, spray the couch with Lysol spray to make it smell better, and cover it with a purple blanket that my mother bought me from Mexico. Now the couch looks very lovely in the office I share with my friend. Above it, there is a wall outlet, which I have plugged a wax warmer into. It smells really nice and looks very comfortable, but my friend’s students were confused about whether or not they were permitted to sit on the couch, since it appears to be on my side of the office. To mend this issue, I put a laminated sign above it that reads, “All Students Welcome to Sit on Couch.” What I didn’t realize was that this would attract more than just my friend’s and my own students until the day of my first awkward encounter involving the couch.

I was teaching my 8:00 a.m. class and I’m not sure what I said that caused this student to be interested in me, but afterward, I was sitting in my office when a student that I didn’t recognize came to my door. I had recently substituted for my husband who had to have surgery (it was minor and he’s fine), so I wasn’t sure if he was one of my husband’s students or one of my friend’s students. He turned out to be neither. He happened to be a graduate student (I only teach undergraduates) in the engineering department at the university. He also mentioned that he’d had an internship at NASA. All of this was really fascinating, of course, but the encounter was awkward. The student kept looking in the mirror in my office to make sure that he was reacting appropriately. He appeared to be attempting to make eye contact, but couldn’t make his eyes really look at me. It was clear that this student wasn’t your typical student. And then he mentioned that he has Autism. I told him that I could tell and he asked how I was able to do so. I then told him about my Autistic son and gestured to the informational sheet that is hanging on my door. He really lacked confidence in his ability to appropriately communicate with me, but I was nice. I knew others had not been in the past. He made that perfectly clear. He showed me some of his work, which I couldn’t understand, of course and then he eventually left. I haven’t seen him since then.

Another awkward couch encounter happened today while I was sitting in my office eating lunch. This time it was another professor who I’ve seen around the office building and have said hello to, but hadn’t quite had a real conversation with until today. Perhaps the inviting couch lured him in; I’m not sure, though he didn’t sit on the couch. He just kept looking at it as we were speaking to each other. He, too, was curious about my son’s Autism and as a parent of an Autistic child and someone who is all for advocacy, I am always willing to share my experience with those who are curious. This particular colleague was really interested in the process of getting a diagnosis, so I explained to him that it’s a long, drawn out process that is, quite frankly, annoying to say the least.

First, you know that there is a problem. As a parent, you really want quick and easy answers, but there aren’t any when it comes to Autism. The first step is to rule out all other possibilities. In this process, my son went through a CAT scan to make sure that there was no pressure on his brain (he has a bit of a flat spot, but there was nothing to worry about), had his hearing tested, and went through genetic testing, which all happened before we were even able to see the developmental specialist face to face who diagnosed my son. Once we were there, there were still more steps to take. The doctor told me that he was looking for a list of about fifteen things that were true for my son and that my son had thirteen items on the list. I knew then that it was Autism, but was told by the doctor that there were still more steps to take. I had to film my son interacting with children that he did know and children that he didn’t know. I had to be asked about a thousand questions about my son’s odd behaviors and about his verbalization. My son and I saw this doctor three times in person and my son and his father saw him the first time through tele-care (health care provided through a Skype like program for rural areas of our state) before we had a diagnosis. But for me, this piece of paper that said my son was Autistic was a blessing because now I had the means to get my son the services that he needed.

This was all that I and my colleague discussed. So, what is it about this couch? I have to wonder. Perhaps it’s the purple blanket. Purple is a calming color. Or perhaps it’s the wax warmer in the outlet above it that provides a calming glow. Perhaps it’s the scent of Hawaiian flowers that draws these people to my office to sit on the couch, wonder about the couch, and chat. But really, it’s a great piece of furniture to have because it’s helping me spread Autism awareness and allowing me to let at least one Autistic person know that some people truly can be friends, even if the first encounter is strange and awkward.

An Ever-changing Journey

Here is a blog post that was saved as a draft, but was never actually published. I wrote this sometime in January of 2013.

So, the holidays are finally over, I’m completely finished with school (as in I now have a terminal degree and won’t have to go back) and we are still struggling with all of Thatcher’s various therapies. First of all, let me explain: Before the holidays, everything was going pretty well. Thatcher had an hour of speech and an hour of OT outside of school a week and was getting community living supports (CLS), but just before the holidays things started falling apart again. First, his CLS worker quit. We were assigned someone new in the same agency. He worked for a few weeks and also quit. So now, we are trying to go through a different agency and still have yet to find a CLS worker, even though my son has been approved for this service.

Thatcher’s OT got pregnant and went back to her home state, which is fine, but that left us with a new therapist who believes (and I have to agree with her on this) that Thatcher would be better off in a facility that is better equipped for children (he’s currently going to an adult facility).

His speech therapist hasn’t changed, but is adding music therapy, which is great for Thatcher once that gets going. Also, his special education teacher left for maternity leave, but is now back at school and he looks forward to seeing her every day.

The problem, though, is that so much of Thatcher’s world is changing. Not to mention, I’m working on finding him a new doctor. Why? Because it’s troublesome to see a different doctor or nurse practitioner every time we go into the office and have to go through this every time:

Me: Thatcher is having this problem. He’s been crying a lot lately, seems to not feel well and I’m not sure what’s wrong. This isn’t normal, but he has Autism and is non-verbal.

Doctor: Okay, well, let’s check Thatcher out and see what’s going on.

*Doctor proceeds checking Thatcher and I wait.

Doctor: Has Thatcher been complaining of any pain recently, like a tummy ache or anything?

Me: No. Thatcher has Autism and is non-verbal, therefore, he cannot tell me when things are wrong. I just have to guess.

Thinking in my head: Did I not just say that he has Autism and is non-verbal? Does this doctor not know what non-verbal means?

Doctor: *Looking annoyed because I can’t tell her anything. Oh, okay, well I was just wondering if he had mentioned anything to you.

Me: No.

This happens every single time we go to the doctor. Does this happen to other Autism Moms?

A Tough Day at O.T., but Still Productive and Considering Moving Blog to Tumblr

*UPDATE* Thatcher is officially potty trained! Yeah! It took a lot of intense training and hard work on Thatcher’s part, but we finally made it. Now, Thatcher hardly ever has an accident, which is good news for Mom and Dad. However, Thatcher is still learning how to pull his pants up and down, wiping, and proper hand washing. During the day, we set a time, which goes off every hour to alert Thatcher that it is “Potty Time.” He sits on the potty for 9 minute intervals (unless he goes sooner) to give him the maximum time to do his business without sitting for too long and we have a middle of the night potty break most nights to avoid night time accidents.

So, now for the real reason for this post: Thatcher’s Tough Day at O.T.

Okay, so normally, Thatcher likes going to the therapy, but some days, he just doesn’t feel like it. Those are the most difficult days because Thatcher usually screams and it’s not easy to calm him and if he isn’t calm, it’s harder to get any real work done, but today I was impressed. Even though this is the beginning of the week right after Thanksgiving break, Thatcher and his O.T. were able to work together, changing up the activities for today, to get the most out of his O.T. session.

So, here are some pictures:

Thatcher started out jumping on the trampoline. This is a great activity for sensory input, which is vital for Thatcher. This can calm him and make it easier for Thatcher to do better during other tasks. The reason is because Thatcher has sensory processing disorder, so Thatcher has to have extra sensory input in order to cope with the world around him. At home, Thatcher likes to jump on his bed, and off his bed, and jump up and down in front of the television. Simply put, like many children with Autism who like to swing or rock, Thatcher likes to jump.

After some jumping on the trampoline, Thatcher had some fun with Play Dough. This is a more difficult task that is used to build hand strength so that Thatcher can do better with fine motor tasks, like tying shoes, using scissors, and using a pencil. Thatcher does not have a very good grip and has some trouble controlling what his hands are doing. Whereas most children his age are learning to trace letters and numbers and tie their shoes, Thatcher is working on the fundamental building blocks to do these tasks. 

Thatcher got interested in pulling apart the Play Dough before getting frustrated and throwing it across the room.

When Thatcher is frustrated and jumping doesn’t help, Thatcher really likes “deep pressure.” Thatcher will often seek out hugs for comfort, even from people he doesn’t know very well, but he will not a hug a person if he’s not in the mood to do so, like many other kids his age.

When Thatcher is seeking deep pressure, it is good for him to have “squeezes,” which literally means, squeezing him, a little harder than for a normal hug. This gives him the deep pressure he needs. His O.T. also used “Joint Compressions” today to try and calm Thatcher, which is where the O.T. grabs at both sides of a joint and pushes them together. For example, a wrist joint compression would consist of grabbing the hand and the arm and pushing them together to compress the joint.

Thatcher did a little bit of coloring today, which is useful in teaching the proper grip for handwriting and will later lead to the fine motor skills necessary for writing letters and numbers. Thatcher’s O.T. uses stencils and plastic texture cards under the paper to keep Thatcher interested in coloring the paper because it is easier to feel what the crayon is doing with this method, but sometimes, Thatcher likes to look at the texture cards and stencils.

Because Thatcher was having such a tough day today, we ended the day with a light up fidget toy. Fidget toys can help a person with Autism focus better on a task at hand because they are focused on only one or two things, rather than focusing on several different things. We often use fidget toys at Potty Time to keep Thatcher focused so that he will stay on the potty and do what he needs to do without getting up and wandering off too soon. Fidget toys can also be very calming for the same reason that they help a person with Autism be more focused.

So, there’s a tough day at O.T. Most days more work gets done, but today, we took it easy, changed up the schedule and got through O.T. without too much fuss from Thatcher, even though he really didn’t feel up to being there today.

And last, but not least, I’m considering moving this blog to Tumblr because Tumblr has become a more popular blog host among many people that I know. I really like Blogger and have been with Blogger for various blogs for quite a few years, but to reach the masses, I feel that I must move on. 

The Potty Training Saga Continues!

Well, it’s been a long wait and after much paperwork was filed and lots of questions answered, Thatcher is finally receiving potty training intervention provided by a behavioral specialist. As I’d stated before, we’ve tried everything a person can think of, from rewards to “open door” policy to schedule training, but without any help we were getting nowhere. Thatcher has been going “pee pee” in the potty every morning when he gets up for a very long time now, but we couldn’t seem to convince him that going potty is an all day event. We even tried a musical device that would sound when his underpants were wet, but this didn’t work because the device was not very loud and nobody could hear it unless they were right next to Thatcher when it went off and then the things stopped working. I called the company and got replacements, but when I mentioned that they weren’t loud enough, the person who answered the phone said, “We don’t want to scare the children by making the device too loud.” What bothers me about that, though, is that the device plays the tune “It’s a Small World,” which doesn’t sound like it would scare a child at all. Anyway, the musical device called Tinkle Toonz was a bust and we ended up calling it quits until the behavioral specialist could come in and save the day.

So, the question now is: If you’ve tried everything already, what is left to try? Well, do you ever have one of those “Ah ha” moments when it comes to figuring out how to teach your child, or any child for that matter? Our plan of action? Try everything! At the same time! Yup, that should do… try everything at once, but we’ll see… *fingers crossed.

Okay, so we knew that schedule training didn’t work, but in order to record when Thatcher goes, we printed off the schedule training sheets again. They look like this:

I made these using a MS Excel document. Each page is one document and there were a few tiny errors, but the times go from shortly before Thatcher wakes up (just in case he gets up early) to shortly after Thatcher goes to bed (in case we are up later than usual). On the bottom of the sheets is a legend to tell you what to enter in each box, which looks like this:

And here is one more picture of the schedule which shows a closer look at the top and where we’ve filled in part of it:

So, there are the pictures of the schedule, but of course, like I said before, schedule training did not work for Thatcher, so in addition to the schedule, we also have an alarm. This is like the Tinkle Toonz in that it is a sensor that goes off when it gets wet, but instead of being a musical tune that is difficult to hear, it is a much louder buzzing sound. Once the child gets used to the alarm, it will theoretically not scare them and it’s not so loud that it would cause them any pain. However, the difficult part about this device is that the alarm box (which makes the sound) has to be attached to the child’s shirt of outer clothing and it has a cord which goes down and attaches to the underpants where the sensor is located, so the most difficult part about this is the child getting used to wearing the device. With Thatcher this was a very simple process, but the behavioral specialist tells me that many children don’t like or are afraid of the device at first and will try to pull it off. Thatcher, on the other hand, was merely curious about the device, but wasn’t afraid of it and didn’t try to take it off. This alarm can be found at your local medical supply store or on the Sleep Dry website. We ended up giving the behavioral specialist the Tinkle Toonz alarms that were never used (they were replacements), which she plans to use as rewards for other children and she paid for our Sleep Dry alarm. Here is a picture of the box that ours came in:

Of course, schedule training and an alarm doesn’t work by themselves. There have to be visual ques and rewards, so when Thatcher is taken to the potty (every 30 minutes [we also check to see if he’s dry every 15 minutes]), he is given this picture of the potty, which Thatcher’s preschool teacher gave to us for his schedule board:

Thatcher is given a small treat when his pants are dry, like one goldfish cracker or one gummy. You can choose your child’s favorite items, but given nothing if he’s wet. He is also given lots of praise and a piece of candy if he goes “pee pee” in the potty, which is a bigger treat than what he is given for being dry. If the alarm sounds before he’s sitting on the potty and he does not void in the potty, then he is given nothing, but if he finishes voiding in the potty when the alarm sounds he is given a piece of candy and lots of praise. And all of this certainly would not work if it weren’t for this little device: 

That’s right! It’s a kitchen timer, which only costs a couple of dollars at Wal-Mart. We set it to 15 minute intervals for the time being for checking dryness and putting Thatcher on the potty. At 15 minutes we check for dryness and 15 minutes later Thatcher is put on the potty. When Thatcher was much younger we were using a musical potty, which would play music when Thatcher voided in the potty, but this doesn’t work for smaller children and it is recommended that children with Autism immediately use the big potty with a seat that snaps in place and a stool. We used the smaller potty before because we didn’t know yet that Thatcher has Autism and therefore did not know about the recommendation to put the child on the big potty. This is also useful if your child does not like change. Fortunately, we chose a potty that looked similar to the big potty and had a top that could be removed and snapped to the seat of any toilet. Our potty set up looks like this: 

As you can see, the lid to the small potty snaps on the big potty very easily and can be used with either gender (the pee catcher comes completely off so that it can be used for girls, too). So far, the results are looking good. We are using lots of different tools and our fingers are crossed that Thatcher will be going potty every time very soon. As far as voiding in the potty, Thatcher has done this once (today) during a scheduled “sit on the potty” time… so, updates on Thatcher’s progress will come soon. 🙂

Activity Boxes

So, before I get into the real purpose of this post, I’d like to make some things known. First of all, I have decided that instead of referring to my son as “Monkey” like I have been, I am going to break that barrier with my readers and call my son by his name on here from now on, which is Thatcher. I will continue to allow his last name to remain private as well as our location for the time being. I’d also like to say that the reason I haven’t posted in a while is that over the course of the school year, things got really busy around here. I’m about to finish the requirements for my master’s degree and needed all the extra time I could get to focus on finishing my thesis and Thatcher was having an issue with the provider of his speech and occupational therapy. Basically, all of those wonderful things I’d said before about how great it was that he was talking; well, he’d reverted back to only saying, “no,” which I think had a lot to do with the fact that his therapists kept changing. He had three different speech therapists over the course of less than a year and then his occupational therapist took another job. Of course, I can’t fault her for wanting more pay in such a horrible economy, but Thatcher suffered and after she left, my son was assigned an occupational therapist that saw him once and then was on medical leave indefinitely, so it was time for a change. I went back to Thatcher’s doctor and requested new providers. In other news, Thatcher was approved for a waiver program in our state which pays for therapies that his medical card doesn’t cover so he’s now getting community living supports (2 hours a week) and will begin potty training intervention very soon.

Now, on to the purpose of this post: Activity boxes. I’ve decided that this blog needs more pictures and what a better way to start then with an idea given to me by Thatcher’s preschool teacher. At the end of the year, I had been asking about what my son can do in the summer to continue all the progress he’s making and his teacher came up with this:

These are numbered activity boxes. His teacher suggested starting with three boxes and building up to more. I have two sets of numbers 1-6, so the most we could do using the numbers is six boxes, which is more than enough for a four; almost five year old. Also, there were a couple of foam puzzles that wouldn’t fit in one of these boxes, so his teacher put it in a gallon sized bag. The boxes came from the Dollar Tree, which is one of my all time favorite stores. Everything in the store is $1 or less, so it is a true dollar store, unlike Family Dollar, Dollar General, and most other dollar stores.

So, we have all of this, but then, how do we initiate play with the activity boxes? We use a laminated folder that looks like this:

As you can see, the number of the box we are using goes in the “Time for” slot and the numbers of the boxes that we’ve finished goes in the “Finished with” slot. The boxes we haven’t started go in the other section along with a card for “Choice” which is the one with the hand. After Thatcher has completed using each activity box, he is allowed to choose the activity he’d like, such as iPad or television. This is the reward for completing the activities with minimal meltdowns.

I also like using picture cards with the boxes, instead of number cards, or in addition to number cards, which makes the folder look like this:


Since it’s difficult to see what the pictures say, I can tell you that it’s “Time for” Sensory Box, we are “Finished with” Bubbles and Shaving Cream, and we still have Peg Board and Choice left in this example. This is useful because it gives Thatcher a visual aid rather than an abstract number.

So, now that we’ve seen how it works, lets take a closer look at each of the activity boxes and we’ll start with the one that isn’t actually a box, but a bag. Here’s a closer look at the Foam Puzzles activity. There is a number puzzle and an alphabet puzzle in this bag and this is also the bag I store the folder and the number and picture labels in when they are not in use:

And here is a closer look at how the tops of the boxes are labeled with picture cards. These are pictures that I made using my computer, which I laminated with laminating sheets I purchased at Wal-Mart. I did have an issue with the cards coming apart, but a little Elmer’s glue fixed that w/o making the pictures not visible.

These have been attached with Velcro dots. I put the softer ones on the box and the rougher ones on the backs of the pictures, but it doesn’t matter how you do it as long as you do it the same way for every box.

And here is a closer view of the numbers on the front of the boxes:

As you can see, they also come off and stick on using Velcro dots. This is great because you can put the number cards on the tops of the boxes or on the front:

And here is what is actually in these activity boxes. This one is full of bristle blocks. Thatcher’s teacher had these left over. Most of these boxes were made by her, but there were a few left over boxes that I used to create extra activities:

And here is a box with dinosaurs, animals, numbers and dice. Thatcher’s teacher included index cards in some of the boxes which explain the activities.

And here are the directions for the previous box. I hope you can read that:

And here’s the next box. I put the picture card in the box to make it easier to see what is actually in this box. It’s just craft pom-poms (fuzz balls), clothes pins, containers, and some easy grip tongs, which I added to the box since Thatcher still has trouble using the clothes pins to pick up the pom-poms:

And here are the directions for this box:

This is the Alphabet box and it’s pretty self explanatory:

Here is the Music Box. It has lip whistles, which don’t make a high pitched noise like other whistles, so they aren’t as annoying. It also has a Kazoo, Recorder (Flute Toy), Hand Clapper, and some baby spoons which I also purchased at the Dollar Tree. I ordered the lip whistles online on a website where they were on clearance. I highly recommend them if you can find them. I got a set of 12, individually wrapped for about $3 plus shipping. The spoons can be used as drum sticks by emptying the box and turning it upside down:

And here is a favorite; the Sensory Box! You can fill this with pretty much anything, but beans aren’t as messy as sand, rice, etc. You can also rotate what is in the sensory box. The cups are baby snack cups from the Dollar Tree and the spoons are just spoons we had when Thatcher was a baby. There are also some magnetic letters and things buried in the beans for Thatcher to find:

And here is the Shapes box. One of the little baggies has shapes that look like buttons and a shoe string for threading. This helps teach the skills needed for tying shoe laces:

And here is the instructional card that was in this box:

Here’s a Peg Board. This is good for teaching fine motor skills as well. The pegs can also be stacked into each other and it all fits in this little box, which is a good way to keep all the pieces together:

And here is a box full of Play Dough, Silly Putty, beads, pipe cleaners, cookie cutters and scissors:

And here is the directional card for that box:

And here is a more random box. It has shaving cream, bubbles, makeup brushes (good for sensory), and a sterile brush for the brushing protocol that I’ve previously discussed on here. We have a dry erase board that easily comes off the wall and we use it as a mat for using the shaving cream, play dough, and putty:

And here is how we transport the boxes to therapy. Thatcher’s OT is used to working with adults, so the facility is not already equipped with a lot of these things. Five of the smaller boxes fit in this one tote:

And the ziplock bag with the number puzzles fit on top:

So, here’s the tote, all ready to go to OT with Thatcher. We use these boxes at home, too:

And all of the boxes store nicely under the coffee table in our living room:

And that’s it! All kinds of activities inspired by a teacher and numerous therapists. This is also good for typical children and a great learning experience for all! 

Update on Monkey

The last thing I recall posting about Monkey was that he’d just turned four, so here are a few new updates on my wonderful pride and joy. First of all, Monkey is doing really well in preschool. He loves it and he loves seeing his new friends everyday. He’s also talking a lot more than he used to, which is wonderful. He still has obvious delays in his speech, but being able to hear the words, “I love you” from my son is priceless, especially when he randomly says these words on his own without prompting. As for therapy, Monkey is finally in a position where he receiving “co-treats” which means that his speech therapist and his occupational therapist both see him at the same time, which is something we’ve been trying to work out for a couple of months now. And now, we finally have an I.E.P. (Individualized Educational Plan) for my son. Normally, when a child begins preschool at a public school in our state, the child is either accepted based on low income or disability. I was told by our local board of education that the process of getting Monkey into school would be faster if I chose to enroll Monkey based on our income, so I did, not knowing that it would take until January to even get an I.E.P. meeting. Apparently, the school had so many months from the time I requested an I.E.P. to have the meeting and they took all of the time they could get, but I’m glad that Monkey now has what he needs at school.

So, now the next step in the process for Monkey is potty training intervention. I’m getting nowhere with potty training him, but have been told to use the TEACCH approach. Apparently, this is the best way to teach Monkey that he can use the potty more than just in the morning when I literally have to place him on the potty and give him a distraction toy (the iPod) just to get him to sit there and go. This is the only time of the day that I’ve been successful in getting him to go potty and for us the TEACCH approach just isn’t working. So, the next step is some kind of potty training intervention, which Monkey’s medical insurance doesn’t pay for, so I applied him for a waiver program in our state. Monkey was approved for the waiver, but we are still in the process of acquiring these funds, so the journey continues. This waiver should cover the cost of a potty training intervention program where I actually get help with teaching Monkey to potty in a way that he can understand. Though I’ve been told by several people that children with Autism are usually really late to potty train and it’s quite impressive that I can get him to go potty almost every single morning. It’s a journey, but Monkey is well worth the effort.

Autism Spectrum Disorder Has No Degree of Severity

*Autism Spectrum Disorder has no degree of severity between the different types of ASD. It is neither worse, nor better to have “High Functioning Autism” (Asperger’s Syndrome), “Classic Autism,” or PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified).

Now that we know my son has Autism, I’m often asked the question, “Where on the spectrum does your son fall?” I had a rant about this in an earlier post, but I’ve often found that the problem is the misconception of the name Autism Spectrum. Some people take this to mean that there are different degrees of Autism. This is especially true of those who have heard of “High Functioning Autism,” but have no idea what it is. Let me clarify: “High Functioning Autism” is just another name for Asperger’s Syndrome, which is Autism without a speech delay. The symptoms of Asperger’s Syndrome are much like those of regular Autism, except that a person with Asperger’s does not have significant difficulty with spoken language. They do, however, have a lot of trouble with unspoken communication, like body language and facial cues. This is why if you say, “Come here” to a person with Asperger’s they will not be able to distinguish whether or not you are mad or simply happy to see them.

Of course, I say all of this, not lightly, but with the knowledge of a step-brother who was diagnosed with Asperger’s as an adult a couple of years before we found out that Monkey has Autism. It is my experience that all people with Autism are unique. They all show different symptoms as well as different severity of those symptoms. For instance, my son has made a lot of progress in just a few short months. He can now say his entire alphabet song (I don’t say sing because normally he just shouts it) and count to 10. He has also picked up many other phrases from television and people that he hears and does a lot of parroting. Even though he’s made so much progress in speech, he still flaps his hands and needs the sensation of jumping off of things. Other children with Autism might take longer to pick up speech than Thatcher, even given the same circumstances.

But the point is, that all people with any form of Autism are unique. A person who just sees someone with Autism and doesn’t recognize it might believe that the person with Autism is odd, but certainly not slow because people with Autism have brilliant minds. Speaking of my own experience, my son can work my iPod with ease and actually picked up the skill before I owned one. A friend of mine used to come over all the time and she handed it to him one day. As soon as she handed it to him, he knew exactly how to unlock it and flip pages in iBooks. I have absolutely no idea how he was able to figure out how to work the iPod without reading any instructions or seeing someone else work the iPod at three years old (he’s now four).

It’s not easy to be an advocate for someone like my son, but I just want people out there to know that my son is not “slow.” He’s a very smart little boy and though learning comes a bit slower in some areas for him, he can learn and once he does learn something, he generally doesn’t forget what he’s learned. I’m proud to admit that my husband and I were able to teach our son to use a coaster at two years old. We did this by telling him he could not throw his cup on the floor and showing him over and over that his cup belongs on a coaster. It wasn’t easy, but we did it. Now, he always puts his cup on a coaster, if one is available and if one is not, he at least puts his cup on a table, but never in the floor. However, he prefers a straw cup and we have not been able to teach him the concept of a normal sippy cup. I personally believe that people have far too many misconceptions about what Autism is and this is part of the reason it is so difficult to fix. I’m not sure if I’ve ever posted this on this blog before, but it’s something everyone should see: 

The Big 4 and Other Stuff

Sunday was my son’s fourth birthday and we decided because of funds, we’d have his party in our two bedroom apartment, which actually went surprisingly well. We invited far too many people, but knew that many of those that were invited probably wouldn’t show, which was fine because it would have been far too crowded if everyone we invited showed up. Because my son just started school and doesn’t really know a lot of the kids yet, most of the people at the party were adults, but there was one other child around my son’s age. She’s his cousin and two years old; about to turn three. There was also a baby at the party, but she’s only a few months old. My son wasn’t feeling well, either because he picked up something from school last week, which I later found out was strep and had to inform everyone who was at the party that they could be contagious. He’s been extra clingy, but he was excited about his party, especially after the mention of cake, which he kept asking for once he heard.

All in all, the party was great. My son had a great time once we started the process of letting him blow out candles on the cake and singing to him. Even that is progress because at his first birthday party, the singing actually scared him. Now he loves to blow out the candles because he knows when he’s done he can have his cake. Naturally, he put his hand in the cake as soon as the candles were all blown out. The party went much longer than expected, but it was fun and once the presents were opened and my son had his cake, which was pretty much his only concern, he played and had fun with the balloons. I loved watching him have so much fun and was lucky enough to get a bit of “mommy” time with my sister and best friend. (We took a walk around the block three times during the party while my wonderful husband kept an eye on the kids).

Then Monday was the second support group meeting I’ve been to. My husband had originally planned to go with me, but because he was feeling ill, decided not to go at the last minute. I went anyway and I’m glad I did because I took so much from this meeting that I didn’t get at the first one. The discussion for this meeting was about starting the new school year with an ASD child or children and the guest speaker was someone from the brand new preschool for children with ASD that will be starting next week. Unfortunately, I will not be able to afford to send my son to this special preschool and next year he’ll be too old for preschool. This year there are about 20 kids in his class and only two adults; a teacher and a teacher’s aid.The ASD preschool has a 2:1 ratio for new students and then works up to 4:1 and then 6:1, eventually getting ready for a regular classroom.

The rest of the week was rather uneventful since we all stayed home sick until today. Today, I took my son to preschool and naturally, Monkey and I were the first ones to arrive, so we waited patiently outside of his teacher’s classroom until we were greeted by another mom that I hadn’t seen before. She had her three year old son with her and right away we noticed similarities between our sons. They began screaming at each other, which was pretty funny because they were both screaming because the other one was screaming and they were both using the exact same pitch. Then the mom that I’d just met turned to greet some other parents who had just arrived and then the teacher who had just come around the corner, so Monkey and I made our way into the room as soon as the door opened. After getting Monkey situated and getting his hands washed, I said by and he waved saying, “Bye, bye.” And then I walked out of the room, but stayed close enough to the door to wait for the new mom to come out of the room. I could tell she was having trouble leaving her son, but I assured her that her son was in good hands and that it would be okay. After talking to her for minute, I informed her of Monkey’s diagnosis and she told me that her son, too had been diagnosed with Autism, which began an hour long discussion about our children and exchanges of information.

I was extremely glad to know that there would be someone else in Monkey’s class who also has Autism so that they might better understand themselves and each other and I was really glad to meet another parent whose going through what I’m going through right now. Then, when I picked up Monkey from school, she informed me that he and the new kid in the class had screaming contests all day. She looked like they were driving her crazy a little bit, but I was just glad they weren’t actually hurting each other because that could have happened, too. All in all, it’s been a pretty roller coaster-like week. We’ve all had our ups and downs, but it’s all worth the ride.

First Day of Preschool

Today was Monkey’s first day of preschool and also the first day with his new speech therapist, so naturally, he is now jumping up and down and playing and I am utterly exhausted. I explained the Monkey what we would be doing today, each step of getting ready, where we were going, etc. Everything went smoothly this morning as I prepared my son and myself for the first day of preschool and my husband prepared himself to head off to his new job for some last minute preparations before he starts teaching again tomorrow. Then it was off to the school. I had no idea where the school was, so I’d printed off directions and it’s a good thing I did because even though I could presumably walk to the school, it’s off the main roads and there are no signs to tell you that you are even close to a school until you are right next to it (where there is a school speed zone).

Monkey and I walked into the school fifteen minutes before his class started, which proved to be far too early. There were other parents waiting outside of the classroom, but Monkey didn’t want to wait in the hallway. To him, the hallway was too small and there were far too many people in it for his liking. If I had been the only person who brought their child that early for the class, my son would have been fine because no one else would have been in the hallway. However, that was not the case. He screamed several times and told me, “no” a lot. I tried to comfort him using everything I could think of from OT. I used the brushing protocol, tried deep pressure, held him until my arms felt like they would fall off, and turned him upside down several times. I tried to explain to him that the other kids were scared, too, but that it would be okay, but nothing seemed to help until it was time for class and the hallway began to clear. There were just too many people for him. Monkey and I finally walked into the classroom last. His teachers were really nice and they could tell how stressed I was as I hopelessly watched my son have one of his worst meltdowns. He laid in the floor on the group rug, sucking his thump, pulling his ear until it was red, crying and screaming, “no” at anyone who touched or talked to him. This lasted for a while, but the teacher continued with the days activities, holding Monkey as she taught and doing anything she could to help keep him clam.

Then it was time for the kids to go to lunch. Monkey is in the afternoon preschool class, which is 3 hours a day, 5 days a week. I didn’t know that lunch was the second thing on the agenda, so I’d given Monkey some food before he went to school. As I followed the class to the cafeteria, I talked to the schools speech pathologist while Monkey’s teacher carried him up the stairs (he’s afraid of stairs, which I told the speech pathologist and was later told by his teacher that he was shaking as she carried him). His teacher took him through the line, shouting out the question, “Does he want yogurt or pizza?” as she went through the door. “Yogurt, I yelled back.” I knew if he was hungry at all, he’d eat yogurt, but probably wouldn’t touch pizza today. I continued to talk to the speech pathologist through most of lunch, explaining all the progress that Monkey has made over the summer and what he still needs to work on, how to calm him and the different approaches to language that we are using, including PECS and ASL. By this time, Monkey had calmed down sufficiently.

After lunch, which Monkey’s teacher had to feed to him because he has trouble using a spoon, but not a fork (which I will mention to her tomorrow), we went back to the classroom for what the teachers call “centers” which means the entire class gets to choose which activity they would like to do. Monkey was fascinated by the fish and continually pushed other children who attempted to get near the aquarium. He even pinched a girl at one point and the girl was pretty big. She looked like she was going to punch him for pinching her. It wasn’t long, though before he found the sensory table, which was basically a plastic box that was filled with sand and had paddles for the kids to shovel the sand with. At that table, he even shared space with another kid as well as shared the paddles and before I knew it, it was time to take Monkey to speech therapy. (I’m currently working with his school to get therapy at the school, but in the meantime, have to take him out of school early two days a week. The great thing, though is that at the beginning of the day, I thought I might have to be with Monkey in the classroom well into next week, but by the end of the day, I felt like being out of the classroom by Thursday would be good.

I was glad that Monkey and left early because the parking lot wasn’t yet very busy with parents lining up to pick up their kids and teachers and administrators coming and going. Monkey and I go to therapy right on time and were not waiting long before his new speech therapist came into the room to take my son. I decided to be in the room with him for the first couple of sessions, since this was a new person, but he did so well that I decided that it would be safe to be outside of the room at his next appointment. We are almost to the point where I stay in the waiting room while he goes off with his ST and OT without crying or having a meltdown. And then, I did something that I shouldn’t have. I forgot to get Monkey’s excuse for missing school along with filling out the medical release form for the school. My husband called me before I was too far away, which reminded me, so I went back, even though I knew that Monkey would not be happy about walking back into the building and doing something different than normal. Normally, I sign him in and then lead him to the kid’s waiting room, which is enclosed and I am thankful for that. He was very patient while I filled out the papers and made my requests for an extended excuse from school on his therapy days, but then when I told him to follow me to the restroom, he refused to come. I had to pick him up and carry him. I knew I wouldn’t be able to make it home without using their facilities. Then, while trying to get him to leave the restroom, he refused again, which always means a screaming fit and occasionally a meltdown. To avoid the worst, I picked up Monkey and put him on my shoulders and he was fine again once we were in the car and he knew that we were now really going home. Now that we’ve been home for several hours, Monkey has been extremely calm, almost as if the beginning of the day didn’t happen at all. It makes me wonder if he wonders if it was all just a dream.

And what a way to end the day: As I was writing this entry I was informed by some of my online classmates that my homework that I posted yesterday was gone. And I didn’t save it anywhere. So, I freaked out a little, especially since for some reason I couldn’t open the syllabus to access the professors contact information and had to restart the computer. Luckily, someone is looking out for me though, because after my brief meltdown, I was able to find the professor’s number and explain the situation that had just occurred, which was fixed with in a few minutes of my call. Apparently, the thread was down. I’m not sure how only a thread goes down, but that’s what happened according to my university’s IT department. Needless to say, I copied and pasted my work into a word document and saved it this time and I won’t be making the mistake of not saving major posts again. So, now it’s 9:00 p.m. here and only an hour before bedtime and then tomorrow, I’ll do it all again, but hopefully with a little more sleep (I only got 5 hours last night because I was worrying about Monkey going to school most of the night and morning).