Trying Out Best Through the Holidays

Holidays are hard. I think they can be hard for adults and children, both typical and special needs. With the excitement, the magic and the wonder, comes the frustration, the over stimulation, and the lack of routine.

We live 3 hours away from where we grew up, and where our families still live. The good news about that is we get to see both sides of the family during holidays. The bad part is that we're away from home, and routine often for 4-5 days. We're also away from many of the sensory diet tools that we use. The trampoline is just too big to bring, for example. Both grand parents houses are not exactly 5 year old friendly, but especially when that 5 year old has little to no impulse control.  There are breakables, decorations, dogs (that are shy of kids, especially boisterous ones) and not a lot of space for unwinding time.
This year we have decided to stay at a hotel. I think it is going to be great to have a home base where we can rest and try to meet some of T's needs. Though we won't have some of the bigger sensory tools we have at home, we will be able to bring some of the smaller tools and have a nice quiet place to use them. I'm also looking forward to better sleep for all around, black out curtains are a must for T! I plan on bringing either his play dough or his bean box for some tactile stimulations so that his urge to touch everything in sight is numbed a bit.
Some other tools that I am glad we have this year are T's headphones, and chewies. They will be huge help, especially when we're in the loud and crowded environments that the holidays seem to mean for us. T gets very overstimulated when subjected to loud/busy places and being from very large families, that's basically what we have for him... From family get togethers in small houses to Christmas Eve breakfast at a wonderful, though crowded, restaurant. This year I'm hoping these tools set T up for success rather than several days of sensory overload that borders on panic.
In the past, the easiest part of holidays with family has been the several hour car ride to and from our hometown. I'm hoping that this year is the start to some new traditions, and less tension.

A visit to the ER

Taking any kid to the ER to get a cut mended is stressful, taking an SPD kid to the ER is REALLY stressful. 

Today T was invited to a play-date at Chuck E Cheese, one of his favorite places in the world. It is his own personal heaven, he loves the games, the playground, and the food. He never seems to feel out of place in his SPD "gear" and he plays so well with others there. Anyway, today we had been there for a grand total of 10 minutes when he ran head first into the "Deal or No Deal" game machine. He hit it so hard that he was knocked down to the ground. At first I though he just had a bump, but my friend asked me if he was bleeding. Sure enough there was blood coming from a cut, about an inch long, right above his right eyebrow. 

When he saw the blood he freaked out! Screaming for his blanket, which of course I forgot (way to go mom,) and that he didn't want blood, an ice pack or stitches!! You see, he got stitches 2 years ago when he bit through his lip in a fall, and he's never forgotten it. Every time there is blood he is convinced that there will be stitches. 

I took my screaming, bleeding ball of 50 pound kiddo into the bathroom to see if I could clean him up. Sure enough, when I got some of the blood cleaned up, I saw that the cut looked deep and the edges weren't coming together. He probably needed stitches, or at the very least butterfly bandages. 

When I told him that we needed to go to the hospital he lost his mind. Screaming, and clinging to me, T begged me not to take him to the hospital. He promised that he felt better, and that he was ready to play. Never mind the blood trickling down his face. So off we went.

In the car T refused to use the ice pack, no surprise there. Cold is painful to him, like burning, and sharp pain at once. This was to be a theme for the afternoon.

By the time we got to the ER (about 10 minutes) T was completely calm and was almost excited to get his cut fixed. Though he asked everyone he saw if he needed "a stitch." They took him back and started cleaning him up. When the nurse asked about his pain he told her, "what pain? There's no pain, just blood and a cut." They told him how brave he is, but I don't think they realized that kind of pain doesn't really register for him.

They decided to numb the cut with lidocaine gel, which T was fine with until he found out that they kept it in the refrigerator. Apparently for most people the cold gel doesn't hurt as much as room temp gel, or something like that. Ms. Nurse put the gel on T's cut and he screamed, "Ouch! The cold! It hurts, too cold!!" She patiently explained to him that it was "just cold" and that he was okay. I informed her that he has SPD and that, to him, cold is incredibly painful. That's when I was reminded again how few medical professionals have ever heard of SPD. To her credit, she listened and made a comment about how she would have to look "that" up. 

After two more cold gel treatments (and screaming jags) it was time to clean the cut and see what the treatment would be. T did really well until he was told that all he needed was to have the cut super glued. He did NOT like the prospect of anyone gluing him. He cried and screamed and struggled to get away. Afterward he told me that he was scared of the glue because he thought that it was going to be in him forever, and that they were going to use Elmer's glue. Then the smell of the super glue made his skin hurt. 

Minutes later we were given our discharge papers and T was so anxious to leave that he walked out of the room with only his Crocs and underwear on. (he had been in a hospital down to keep his clothes from getting bloodier.)

Right now he is proudly showing off his hospital bracelets and his cut with the "magic, invisible bandaid" on it. 

Not only did my kiddo get fixed up, but he left happy and we may have spread some SPD awareness. Not bad. Not bad at all.

Where is the Balance?

How does a parent know when it’s time to back off from a certain therapy? That is the question I find myself asking right now. T is doing weekly private OT, weekly OT at school, ILS therapy at home and at his private OT, he will be starting PT in the coming weeks and tomorrow he is having a functional vision test to see if he would benefit from vision therapy. How much is too much?

T is in his second year of a developmental preschool, and he is also in a kindergarten prep class on Wednesdays, so he is in school from 8:15-11:45 five days a week. He comes home from school so tired that he has been refusing (to the point of complete meltdowns) his ILS therapy. We have tried letting him have a quiet time break after school, we have tried doing ILS in the mornings before school, we’ve even tried weekend only sessions. Now I’m trying to figure out if the benefits are actually worth the fight. It was certainly beneficial over the summer, but with school and other therapies, I’m not so sure.

T will be starting PT soon, so that is another thing added to his schedule. I am really thinking that taking a break from the ILS until summer might be a good idea. That way he is getting all of his structured therapies outside of the home, and the therapy he gets at home is on an “as needed” basis. I want home to be a relaxing place for him, where he can feel free to rest when tired, jump when he wants to jump and do therapy activities when his body needs them.

My sweet little boy has asked me on several occasions, “why do I need so much therapy, what is wrong with me? Why am I broken?” It breaks my heart to know that he thinks of himself as broken, and the fact that he has several different therapies makes him feel that way. I try to explain SPD to him, and explain that he’s not broken, his brain just works differently. This sometimes helps and sometimes he looks at me like I’m full of it. He just knows that most of his friends, well the ones outside of school anyway, don’t have to go to OT, or have to wear headphones and do “exercises” at home. He feels different from his friends, and that bothers him.

My struggle is giving up something that might be helping him. How do I make the decision to end a therapy? Does it mean that I’m not doing everything I can to help him, or is it exactly the opposite? I need to figure out what is best for my son, not what is best for me. I need to find out what the right balance between therapy and just letting him be is, and I need to try to do this without causing a backslide in his progress.  I need to let myself do what is right for him without feeling guilty for not doing enough.

Evaluation Time

Last week we received T’s evaluation after 18 months of OT and it showed some significant improvements. It also showed several areas that hadn’t improved at all, and some that had even gotten worse. His OT suggested a few things to try, a PT evaluation, a full function vision evaluation and starting a cognitive program called, “How Does Your Engine Run?”

His biggest improvements were in his fine motor skills. This makes sense because he gets two OT sessions a week dealing with fine motor skills. Once in school and part of his private weekly OT appointment covers the fine motor stuff.  He also improved slightly in the length of time he was able to focus.

Pretty much all of the other issues he has have either stayed the same, or in some cases gotten worse. Now, to be fair, I don’t actually think he’s really gotten worse. Here’s my hypothesis on why he’s showing some sliding in certain areas: now that we’ve had the label of SPD, I’m more educated on what is SPD related, and what is normal kid stuff. So when I filled out the parent questionnaire this time, I was able to provide more complete answers, so in reality, I’ve gotten better at recognizing SPD symptoms. Ones that he has had all this time, but I never included them on the parent evaluation form before.

T’s occupational therapist agrees that this is likely true. She also points out that he is coming up on his 5^th birthday, and is going through some significant changes physically and developmentally. These are often times of regression at worst, and stagnancy at best. We have a bit of both.

I took T for his evaluation to see if he would benefit from physical therapy, and in the 2 weeks since the OT evaluation was done, some of the concerns have righted themselves. Still, he will probably need some form of physical therapy for his core strength and balance issues. He is also slightly behind in his cross body coordination. However, the Physical Therapist only believes that he will need PT on a short term basis of 3-6 months. They believe that with the OT we will see a marked improvement in his gross motor skills.

As for the other sensory stuff, the stuff that has shown the biggest lag in improvement, we will be looking into starting the “How Does Your Engine Run” program in the next few weeks. I still have some research to do on the program, so I will be ordering the book soon. We also have the functional vision evaluation scheduled for next week.

All in all, I am very excited to see what progress T will make in the next 6-12 months with his new tools. I am forever thankful that these tools are available to him, and that he is such a great sport when it comes to participating in all of the evaluations and therapies we involve him in.

Does anyone else use the “How Does Your Engine Run?” program? I would love to hear about your experience!

The Bunny

I’m in love with a bunny. No wait, I’m serious! This magical bunny tells T when he should be sleeping, and when he should be awake. This is vitally important, especially as we head into fall and T’s sleep schedule tries to shift from early, to “Oh my goodness, this time actually exists?” early.

T has two distinct sleep patterns, one for spring/summer and the other for fall/winter. In the spring and summer T goes to bed at 6:45-7am and sleeps well for close to 12 hours. In the fall/winter he starts waking earlier and earlier, no matter what time he goes to bed. We creep to as early as 4:30am some days and for a couple of night owl parents, that is downright painful.

So as summer starts to come to a close, I have noticed this pattern starting again. T was waking 5, 10, 15 minutes earlier every morning and panic started setting in. Frankly, I can deal with anything after 6am, but when I see that time creeping earlier and earlier the dread sets in. You see, I just can’t make myself go to bed at 8:30pm so I am well rested and more importantly, friendly, at 4:30am. So I hit the internet for help.

We are a sleep sharing family (by choice, not necessity) so we have T’s twin bed pushed up next to our king sized bed. So a lot of the methods to get your kid to let you sleep until a reasonable time just won’t work for us. We can’t put a gate on his door and allow him to play in his room until we wake up, his room doesn’t exist. We aren’t willing to let him cry it out until he finally falls back to sleep. But we also aren’t willing to get up at 4:30am. That’s when I found it, the bunny.

The bunny is a “sleep trainer” clock. There is a sleeping bunny and a running bunny, and when it’s time to stay asleep, or in T’s case, quietly relaxing in bed, the sleeping bunny picture is lit up. When the clock reaches the wake up time it lights up the running bunny, signaling to all that it’s okay to wake up mommy and start the day. Luckily, the brightness is adjustable, so kids like T, who need almost complete darkness to sleep, aren’t bothered by a bright night light.

We set the bunny to wake up at T’s normal waking time, which was 5:45am when we bought the clock, and have set it 5 minutes later every 2-3 nights. The method so far has worked like a charm. If he wakes before the bunny, I can remind him that the bunny is still sleeping and that means he should be too. So far it has been such a great visual tool to help T know when an appropriate wake up time is. Since he can’t read a clock yet, the bunny is a life saver.

Before buying the clock, I asked T if he thought it was a good idea. I asked him if he wanted something that had pictures or a colored light that told him when it was wake up time and then we hit Amazon to find the perfect one. T immediately begged for the bunny, and I ordered it that night. We spent 2 days talking about how the bunny worked, and what the reward system for following the bunny’s cues would look like.  The day the bunny arrived T was so excited and told me, “Now I’ll know when to sleep and when I can wake up, I won’ be so tired anymore!”

It’s been a week since the bunny came to our house and he is now waking T up at 6:00am. T is sleeping better, and so am I. I love that darned bunny!

Rough Patch

Sometimes being a mom to a SN needs kid makes me feel like an utter and complete failure. T is in one of many regressions in his SPD and it reminds me that I am probably not meeting all of his needs. It's not that I'm lazy or anything, I just don't know how to help him. We do listening therapy, we do heavy work and outside playtime, and breathing exercises, and, and, and... Right now it just doesn't seem like enough.

Today at OT he had little focus, actually licked his OT therapist, something he hasn't done in half a year, and cried when he had to throw away some used art supplies. Jennifer (his OT) reminded me that he is still far better than he was a year and a half ago, and that these regressions do happen. Usually when there is a growth spurt, or other developmental milestone coming. But it can also be because of a tiny change in routine, or a perceived change in routine.

I know all of this, but my heart still hurts when I see him struggling so much. I still wonder how I can do more, what I'm not doing right, and how it's all my fault. I also find myself losing my patience with him much more often, and the raising of my voice sends him into a sensory tailspin that can ruin an entire day's work. It's exhausting, and times like this I wonder what it would feel like to have a neurotypical child.

Then comes even more guilt, I would never, ever trade my son. He is a bright, sweet, loving boy. He has eyes that melt your heart, and a smile so contagious that it can make me smile even on my darkest days. But I can't help but wonder what he would be like if he didn't have SPD? I am sitting here trying to imagine it, and I can't even come up with a possibility. It's just not in the realm of my imagination anymore. I see children who are neurotypical who sit still at a table, who don't cover their eyes every time the sun is out, who don't crash into their friends, family and especially not walls. I see them, and I can't even picture T the same way. Maybe it's because I've come to realize that T will never be that child. He will always have to work harder to keep his body under control, to fight impulses constantly, and he will always have to work harder than his peers to make friends . I have accepted this, but when there are regressions like he's going through now, it makes me so sad.

What do I wish? I wish I was different. I wish that I could see the progress that he's made in 1.5 years of OT instead of getting so stuck on the back slides. I wish I could see these times as normal, and know that we will come out the other end  further ahead than ever. I wish I was stronger, and that I believed in myself as his mother more. I wish so many things. But I have never wished that T was anyone but who he is, and today, that is my victory.

Please Don't Stare

When I was growing up, I was taught that it is rude to stare. My mother told me that staring is impolite, and it's best to ask her about differences I saw in people. She also taught me that people come in all shapes, sizes, colors, and abilities.

Now, I admit I'm not perfect. I find myself doing a double take when I see a person who is different that I am, or a child who appears to be throwing a tantrum. I don't know a person who doesn't, but I make it a point to avoid staring. If I don't understand a situation I either ask questions, as politely as possible, or I look for the answers on my own when I get home.

This is probably why I am so taken back when I see people staring at my son. I'm especially thrown by full grown adults who sit there and stare with their jaws on the floor when they see my son in his full "sensory wardrobe." I understand kids, but adults should know better.

Granted, T's "sensory get up" is interesting to look at, and he does stand out in a crowd, and I understand a double take here and there. I mean it's not every day that you see a 4.5 year old in what looks like a bullet proof vest and shooter’s ear muffs. (His weighted-compression vest and ear phones) But when you stare for so long that he notices through all of the other sensory things going on, it's ridiculous. And when you actually point your finger at him to show your friends, family, or that stranger next to you, it's infuriating.

This exact thing has happened to us several times. Most recently was at a restaurant, whose mascot is a giant red bird. Since it was close to the lunch time rush, and that place tends to be an exercise in sensory overload anyway, I had put T in his vest and head phones to help him cope with the onslaught of sensory input he was about to receive.

We got seated and T was looking around at all of the pictures, and telling me stories about each of them, when I noticed this man staring at us, at my son. I tried to ignore it, but he just didn't look away. It wasn't like T was screaming, or throwing things (which has happened before.) He was sitting quietly, and really behaving very well.  I noticed the man was pointing at T and whispering to the woman he was with, and that's when T noticed it too. He told me, "mom, why is that man looking at me?" I said something about how he must be really impressed by your behavior. I then told T to wave at the man, when I actually wanted to tell him to wave with one certain finger. The man and the woman, who was also now staring, quickly looked away. T and I ate lunch, all the while the man and woman kept stealing looks our way.

On the way home, T told me that the people "looking at him for a long time, like that man did” made him uncomfortable. I explained that what they were doing was called staring, and that it's rude. I told him that just because someone is different than you are it’s not okay to stare. I also told him that if he ever has questions about someone’s differences it’s okay to ask me quietly about it.

So please, if you see a person, especially a child, who is a little bit different please don’t stare. Remember, it’s okay to ask questions, as long as you do it respectfully (and preferably not in the middle of a meltdown) but it is never ok for an adult to stare and point at a child. Think about how you would feel if someone did that to your child.

When T gets sick.

Let's face it, no one likes it when their kid gets sick, and I'm no exception. Actually the idea of T getting sick scares me, but not for the reason you might think. I actually dread the week after he gets better; when the fever breaks I know we are in trouble.
When T gets sick, he gets really sick. We're talking fevers of 104+ and he barely moves from the couch without being carried. He's my only child, so I'm not sure if what comes next is typical, but I think it has a lot to do with his SPD. After being basically bedridden for a week his senses explode! He has an intense need to move, see, and feel that he becomes unstoppable. He is also probably still a bit sick and he's definitely tired, so you add all of this together and you get a week of sensory meltdowns. Some that are so bad that they scare him and they scare me too.
These meltdowns are not like typical tantrums, they are more. They are more intense, and a lot more violent. T will scream, hit, kick, head butt, bite and basically lose control of himself completely. He falls so deep into the meltdown that if you look into his eyes you don't see anger, you see terror.
This week is one of those weeks. T just got over an almost week long fever, where he was too sick to do any of his OT exercises, or even get off the couch without being carried from one place to the other. This lack of meeting his sensory needs seems to build up until the fever breaks, then it all breaks loose.
Last night was a perfect example of how all the pent up energy manifests; he had his first sensory meltdown in several months. It was so bad that my husband and I had to hold his arms and bear hug him to keep from being hit, kicked, bit, or otherwise getting hurt. As he was calming down he told me that he scared himself. The thing that scared him was that he couldn't stop and didn't understand why. He’s had another such meltdown this morning and I expect about a week of at least once a day sensory meltdowns. So while I hate it when T gets sick, I dread the week after he gets better even more.