sigh...

Our day to day life is normal to me. There are times that are hard, times that are great, times that are frustrating or sad but its our normal. Then there are times that I realize our normal is not normal at all. Today at Target we picked out some clothes and went to the dressing room and waited in line for a room. I watched this little boy come out and show his mom and outfit and then go back and come out in something else. I asked his mom how old he was and she said he was going to Kindergarten this year. These are the times it hits me, you see Carson cannot dress himself, not his undies or shirt or pants or shoes. There are days he can do socks and days he cant. Orienting clothing appropriately, motor planning through putting them on the right way and the fine motor skills to work buttons, zippers, velcro, ect...Those skills just are not there with Carson. This hit me especially hard today. It may seem so small and insignificant unless you deal with it every day. I hate watching my son struggle, I hate giving him clothes and watching him struggle to dress himself and knowing that this is a totally age appropriate task and seeing other children effortlessly perform it literally breaks my heart.  As a mother all we want in life is for our children to be happy, successful at life. So knowing that everyday tasks that are effortless for "typical" children are seemingly impossible for Carson kills me. I wish I could fix it, I wish I could help him, but even though I do everything I can, it will take a lot of time for him to get these skills. There are times I watch him get so frustrated at himself that he hits himself in the head, its so hard. So I will keep doing what I always do, keep on living our normal. I will keep laying his clothes out when I can stand to watch him struggle and I will choose to just dress him when I cant. I don't think it will ever get easier, but I sure hope it does.

SPD Handout for family and friends.

This is a wonderful handout on Sensory Processing Disorder!

More fine motor fun!

This is our newest fine motor fun activity! We got 2 paint sample strips in 2 different colors. One we cut into little squares and glued to a clothespin, the other we left in tack. All the clothespins are taken off the strip and Carson has to match the color, squeeze the pin and hold both steady enough to pin it on, its a challenge but he can do it.

The entire thing costed 98 cents (and we still have clothespins for another activity) and only took about 5 minutes to assemble!

OT...what do we do?

Well I often get asked what we do in OT so I thought I would take some pics and post. This is just 2 days and doesnt include all the activities. Above Carson had to climb an unstable ladder to the top  and grab a pirate flag (clothespin) then jump down and pin it to my purse. This worked on multiple skills, such as, motor planning, balance, bilateral coordination, balance, core stabilization, fine motor skills, proprioceptive input and upper body strength. Usually Carson loves what we do in therapy but this task really pushed him and he struggled letting go of one hand at the top, we did this about 10 times and every time he would cry at the top, but he DID it!

We always do some swinging for vestibular input, Carson loves the lycra swing.

To give him some proprioception she hits him into the crash pad and he LOVES it!

We often do in air obstacle coarses, in this one he had to start on the tire swing or his pirate dingy, and get onto the square swing which was his ship.

He then had to get to the plank and try to grab the treasure off of the ground without falling and toss it into the treasure chest. As you can see it was EXTREMELY difficult for him to do because of his upper body weakness, poor coordination and poor balance.

He is not supposed to touch the ground or "water" because it is filled with sharks. This works on many skills as well, motor planning, bilateral coordination, upper body strength, body awarness, balance, ect... He really struggled with getting the treasure off the ground. His OT is Lori and she is GREAT! He is a pirate fan and she always has a pirate adventure waiting for him! Usually after 45 minutes of vestibular, proprioception, motor planning, heavy work type stuff he gets to do some fine motor skill work. OT makes him so organized, I wish I could build one of these rooms in my house haha!

OH CROUP!

Well I realized it had been awhile since my last post. We had a bit of a rough few weeks but things are starting to get sorted again.
It all started about 3 weeks ago. Carson got a fever Sunday evening, therapy is usually Monday morning. I wondered all night if we would be able to go. When he woke up Monday with a fever of 103.2 I called and cancelled our appointment. He got worse and worse. Being a Respiratory Therapist I knew it was Croup and tried to just wait it out. He is getting to the age where its not supposed to cause all the stridor (swelling in the upper throat causing a high pitched sound when breathing) but for some reason when he gets it  it really puts him down. He gets bad stridor, fever, no voice, sore throat. He was down all week! No school, no OT, no tumbling, nothing. We started steroids and it still took him about a week to start feeling better.
Now before this point we had reached a place where he was doing great. Not picking his lips, keeping pretty level, no panic attacks and minimal fits. We were doing so good. BUT an entire week on the couch, the steroids, the fever, the sore throat. It was a combination for disaster for an SPD kid. First there was no meaningful sensory input for days on end, then combine that with the intense pain of the sore throat and aches in the body. You can see in the picture his lips were picked until they were bleeding. He could not speak or eat so he used lip picking to get oral input. Because he did not feel good so he didnt make much of a fuss the first few days, he progressively lost more and more of his control. THEN just as hope loomed with OT coming on Monday I got a call that our OT had to go out of town for a family emergency and he would have ANOTHER week off! The next 2 weeks were a nightmare. It was as if we had taken 5 steps forward and 20 steps back. He picked his lips all the time, fits were not once or twice a day but it felt like every 5 minutes, crazy running and climbing started again. We couldnt go anywhere or do anything without melt-downs and chaos. It was a nightmare.
We are now getting some order and control back. We are still not back where we were but we are getting there, he is improving each day. I can only PRAY with all my might that he does not get sick ever again, although I know it wont happen. So for now I just dread the day when he does get sick and we have to do this AGAIN!

Therapy room!

Well its finally finished! Our therapy room in the basement has been put together! I still have some things I want to add but its a great great start! I am so excited and so is Carson!

 

 

 

 Carson is in LOVE with it! This is the A-frame that will hold his swings. It currently has a regular swing and a lycra swing but we are also getting a disc swing, rope, and other attachments.The regular swing is great vestibular input and we use it for other fun activities!

 Here he is inside the lycra swing. He loves to spin, swing and to the washing machine. Great vestibular and proprioceptive input!

Another great thing to do with the A-frame is hanging and flipping, Carson is so proud of his first alone flip. Great for both vestibular input by the spinning and proprioceptive input by the push and pull on the muscles as well as hard work, its really hard getting all the way around.

Therapy ball great for bending, twisting, and bouncing, when on the swing I will roll this at him and that provides proprioceptive input, we call it bowling for Carson.

All our therapy toys! Mostly toys we already had that we are adapting into new toys.

Swinging and throwing balls at a penguin vestibular input that is also challenging!

After throwing the ball he has to stay on swing to try and get it, this is great heavy work!

Then we had him jump off the swing and land on the target, vestibular input by swinging, hard work by jumping off the swing, an proprioceptive when landing on the pillows.

To make it even harder work, somersault off the swing onto the target.

After therapy we worked on some fine motor skills, today Carson picked stringing beads on pipe cleaner.

These were just the activities we tried on the first day. We have since then added a few new ones, and we recently tried an obstacle coarse in the air, it was tough but a lot of fun and a lot of hard work! I am so blessed to have the space to give him a therapy room!

Fine motor!

Well the initial reason we were sent to an OT was for a fine motor delay. Since he has been needing less time in OT to calm and become focused we have been able to get some great motor ideas and practice. The first is obvious, stringing beads onto a pipe cleaner. As Carson was doing this we noticed a tremor in his hands, after some investigation with the DR we are pretty sure its just a muscle weakness tremor (whew). When they get better at stringing the beads they move to bundago and then string.

The next idea is for buttoning, its more of a pre-buttoning skill. First get ribbon, medium and large buttons and felt. Sew a large button on one end and medium button on the other end of a 6-8in ribbon.

Cut the felt into shapes and cut small slice in the center. Sew at ends of cuts to make sure they don't tear.

Once they are prepared, string a few felt pieces onto the ribbon so they rest on the large button. This helps the kids know which end to use and it weighs down the ribbon so its easier to manipulate.

And thats it, have the child string the pieces onto the ribbon. During therapy Carson really struggled with this, so much so that I actually teared up watching him try so hard and struggle so much. The great thing about this is that they don't have to manipulate the buttons, no turning or twisting, just placing the button through the hole. Its basically like a piggy bank but more difficult because the fabric and button are not solid objects. The entire activity was 4 dollars, and about an hour and a half to make.