New beginnings?

Well it appears I will soon need to change the name of this to Me my son and Aspergers. We have changed pediatricians to one that specializes in  ASD, SPD, and other childhood nuerological disorders. From her we got the official diagnosis of Anxiety along with his  SPD diagnosis., also noted were his weakness in his hands that is pretty signifigant and his oral ability to appropriately chew and move food to swallow along with the balance and coordination and written expression struggles. We were also told that as we go the pshycologist this next week to be prepared, he will be most likely be diagnosed at that time with an ASD (Autism Spectrum Disoder) and that he fits the Asperger diagnosis, this may also come later but it is fairly certain. This does not surprise me, I have been aware that this day would come, as we attended OT and I spoke with his therapist we came to the understanding that he was on the spectrum and now it is just about going through the proper channels for diagnosis. I am also OK, really I promise. I have known for a long long time that something was not right, I have prepared myself and so as we go through the diagnostic channels I am truly OK. Carson is who he is, he is an amazing wonderful boy who is perfect just the way he is and this will not change that person. I came across this article on my support group facebook page and thought it would be wonderful to share. I think it will help many of my friends out there understand where we are and what is going on.

http://www.parents.com/blogs/to-the-max/2012/10/10/autism/how-to-be-friends-with-an-autism-parent/

I thought it had some wonderful things. Anyway we have a new list to add to our sensory list, new books to read, starting speech therapy for Oral appropriateness, pshychologist, theraputty for hand strength, DVD's and books for him to learn appropriate social behavior and responses, facial emotion pictures, more areas for calming sensory input and swinging and so on. We will be pretty busy for a while but that is ok! I am glad we will be busy doing the things that will benefit our son and make him the most independent and self confident he can be. He is also supposed to start some medication for the anxiety. I am not sure if that is the avenue we are going to persue, we are going to speak with the pshychologist first before we do anything. I feel as though we have no other choice, as his anxiety has really been a major problem in his life since he was 2 years old. It is most definitely not something we will take lightly or jump into, it will take alot of thought and discussion. Well that is what has been happening, hopefully I can get on and post again soon after the pshycology appointment on Thursday. Thanks everyone for all the support and help!

Exausted!

At the end of everyday I find myself utterly exausted. I am always asking myself, why am I so tired? I do the same things other mothers do everyday, plus I only have 2 kids, I should not be so tired. Regardeless of the reason, I am indeed, exausted, extremely exausted all the time. I walk in other homes that are clean and tidy, and I feel extremely inadequate, I feel as though I spend my days constatnly picking up and yet my house is a disaster. The moment I get it tidy there is a stream of toys or something strung throughout the house, and my pleading to pick them up goes unanswered. I watch other mothers with their children and I am humbled for I have no patience anymore, I find myself yelling alot. I even find that I dont really enjoy motherhood, I appriciate being a mother, I love my children more than anything, I love being with my children but I dont feel like I truely enjoy being a mom sometimes. SO then I feel guilty.  I feel as though the majority of my time is spent in constant behavioral redirection or constant disaster control. If I do not redirect the behavior we have disaster, so its one or the other. I wish I could convey in words how frustrating it can be sometimes, almost relentless in the consistantcy of the behaviors, so I spend most of my day frustrated, with myself mostly, because I honestly feel like I have no idea what to do half the time, so I yell. And after I yell, then comes the guilt again. So lately I have been exausted, extremely exausted. I just wish I had a way to not be so frustrated, tired, and not feel so inadequate, and then I would not feel so guilty. I want to enjoy being a mother but when I feel as though my time is spent constantly adverting a crisis, fixing a crisis, preventing a crisis, begging for help in doing something or to just have a simple task completed, Im not exactly sure how to get there.....sigh....I hope I am not royaling messing my kids up!

SO thankful!

So its been an...interesting... couple of weeks with Carson. That kid is his own worst enemy I swear! First off, about 2 weeks ago he was playing with his cousin running around the shed. They were going in opposite directions and they ran right into each other. His cousin is 12 so when they fell he landed on Carson and Carson hit the back of his head on the corner of the cement. He immediately had a bump so big that it was bleeding through the pores from the pressure. The ER did NOTHING! Its been 2 weeks and he still has a bump, the pediatrician said its a scar tissue bump, when there is a SKULL FRACTURE the body creates a bump of scar tissue to protect it. So apparently he had a skull fracture. We are so lucky that there was no bleeding in his brain, I am so thankful that he was ok, with the weight of his cousin and him falling we are so lucky that it was just a skull fracture. So that was fun. It always gets better around here! On Sunday during primary Carson was given a quarter by another kid in primary. Because of the SPD he craves Oral input, in easier terms, he is always putting everything in his mouth, he is always chewing or needing something in his mouth. I was up at the front leading the music and I saw him grab his throat and reach for me. I knew immediately he had put the quarter in his mouth, I yelled "call 911" and basically jumped over the sunbeams. I knew the child heimlich maneuver would not get it out due to its shape and size so I picked him up and flipped him upside down and started the infant heimlich. I was pounding on his back as hard as I could. I heard his teacher get out her phone and start calling 911. It felt like I was pounding on his back forever. Finally I saw the quarter fall out of his mouth on the ground. I just fell to my knees and cried because I was so thankful he was ok. We left the primary room and the presidency took care of my singing time for that day. It was SO scary. I think the part that upset me the most was that I was in front of so many people watching me and that it was Carson. It was something that I had thought about a lot. He has to always be chewing or playing with something in his mouth, if I dont give him something then it could be something inappropriate. We talked about only putting his "chewies" (his mom approved chew things) and nothing else in his mouth but I just keep thinking what if I had not been there, what if I had been out in another room. It makes me feel like I cannot leave him alone at all. Sending him off to school was extra hard Tuesday! I will just have to fight those feelings because I know that its impossible for me to be there all the time. I am so thankful for my education and training, I am just blessed that I have the knowledge to help him and others. My education has been an amazing blessing in our lives and I believe strongly that ALL mothers and anyone around children often should know CPR and the Heimlich.

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.

My Spot

Carson gets a little overstimulated, anxious, frustrated, or just tired often and he used to find spots to help him calm down. He usually picks a closet or under his bed but those places don't really work. He will tear a closet apart if he tries to go in there, and under his bed is so tight he cant be there for a long time. So I made him this spot, it is behind the rocker in his room. It is surrounded on all sides and is big enough for some of his favorite things. I made him a pirate pillow for his spot and as soon as I showed him he filled it with his animals. He likes to play computer back there and I put his pirate texture board there so he could play with it. He has only invited me inside 1 time to read to him. He has really enjoyed it so far and I think he will really benefit from having his own place that is safe and controlled by him.

AHHHH MUMMIES!

Proprioceptive input doesnt just have to be super active, anything that puts pressure on the body can be proprioceptive input, a tight hug, building them into a "sandwich" with pillows, and wrapping them like a mummy also gives great proprioceptive input. I got these ace bandages free at a teaching my hospital did. Carson loves being wrapped in them! We had a scary mummy party! Now every night before bed he asks to be wrapped. We do our bedtime routine with the abdomen and chest wraps. He reads and says prayers in them. This really calms him down and helps him relax before bed. Right before he lays down to sleep we take it off (he really wants to sleep in them so we may need to get him some lycra sheets). Since we have added wrapping to our bedtime routine he has slept through the night 3 times! This is a record. Pre-diagnosis and treatment he had not slept through the night 1 time in probably 6 months. Our bedtime routine also includes me smashing him into bed or making him into a sandwich in his covers, and rubbing his back, stomach or arms. He is sleeping SO much better since adding the proprioceptive activities!

This weeks task.

 Well this week at therapy we were charged with a few tasks, We were supposed to increase the complexity of his activities in order to provide more input and find parks with spinning toys. Here are a few things we did to increase the complexity of the activities. Instead of just swinging we had him swing on his stomach and throw a ball at bottles. Once he mastered that we would spin him and have him throw the ball at bottles. After that we did Carson bowling! He rolled from a pretty good distance aiming for the 2L bottles, he liked doing summersaults.

 After that we had him roll over the bottles, this provided great vestibular and proprioceptive input. He thought it was silly!

 After those fun adventures we set up an obstacle coarse. Climbing over and under, jumping and climbing. He loved switching things up and changing the coarse around.

 Bouncing on the ball is great input!

 Believe it or not after all of that he was still not done! He was ready for more and more. So instead of just jumping we put balls on the trampoline and had him "popcorn" them so they would hit him and give him proprioceptive input.

 Then he started jumping high and landing on top of the balls, he loved the rough and tumble play.



Those were just a couple ideas. We are doing our best to think of more, a great book to read for this kind of stuff is "The Out-Of-Sync child has fun" There have been some good ideas in there.

This was all done with items we had around the house. Balls, 2Liter bottles and our swingset and trampoline. 


As for the parks with spinning toys, they dont really exist. I have asked around and looked and looked but no such luck yet. So instead we got passes to our local theme park, there is alot of spinning there!

Heavy work

Since Carson is a sensory seeker he seeks activities which provide stong sensory input to his body. Stong smells, tastes and alot of physical activity. One great way to provide that input is to provide heavy work, this is anything that requires alot of muscle work to accomplish. What better heavy work than bowling, lifting, carrying and rolling the ball is alot of work! Also alot of fun for none SPD kids!

During the bowling Carson was attentive, organized, well behaved, took turns, fun, happy, interactive and a great listener! It was so much fun to see him so put together!

Once we left the bowling alley and entered the arcade it was a complete 180 degree difference. He was not attentive, very disorganized, running and wandering away, not listening, I couldnt get him to focus on me long enough to get out a word. He was a completely different kid. I dont know if its the lights, sounds, or all the distractions but he just was not the same kid. This is a classic sign of SPD, behavior that is incosistant, his behavior changed within seconds of the change in envioronment. Before the diagnosis I would have been infuriated at the behavior and probably gotten pretty angry with him. Now, I wont say I was fine or that it was not frustrating but I see it differently, I dont think its ok but, now I know its not always a choice for him , its a symptom of his disorder. I kept my calm, because me getting upset is not going to change anything. An SPD child wants so badly to behave and when they are unable to control their behavior and regulate themselves they can become very upset with themselves and this can affect their self esteem. I knew until I removed him from the situation that is overloading him he would not be able to change his behavior. Hopefully OT will help with this and help him be able to regulate himself. Until then I have only 2 options when something like this happens, stay and deal with it the best we can or remove him from the situation, sometimes I stay and sometimes I go. After we left I told him he had to spend some time in his room to calm down and to think about his behavior, after that he was ok. This is definitely something we will talk with the OT about.

Shaving cream paintings.

I just finished a great book called "The out of syn child." It is a wonderful book for parents, teachers and anyone who works or plays with an out of sync kid. I am now working on reading "The out of sync child has fun" a great book with sensory activities for kids. After reading the first activity I thought what the heck, lets give it a shot. It was a really good time I think the boys loved it, even Gavin with no sensory issues found it to be alot of fun. I got 2 pans and a bottle of shaving cream, each got a little mountain of cream to paint the pan and their bodies if they were comfortable. At first they were both hesitant and just used their hands.I then put food coloring in it to give them some color. After a couple minutes I looked over and Gavin was covered tummy to toes in shaving cream.
Carson took a little longer to adjust to the sensations but eventually he did the same thing, I didnt post it because he was in his undies but it was pretty cute! I would suggest next time just doing it in the bathtub, easier cleanup and a larger surface to cover and paint. It was fast and easy and just a quick shower to clean them off. Other great mediums are pudding, or wet sand.

Texture board.

After our experience at church, when Carson was unable to feel anything in his hands while blindfolded, we realized that he had some tactile hyposensitivity. He needs to build his sensitivity and tactile discrimination which will help him know how to hold a pencil, crayon, or marker. How hard to squeeze glue or when he is older be able to reach in his pocket and tell the difference between a quarter and penny. It is a very important ability to have. In order to foster his tactile discrimination I made him a texture board. I got the idea from a friend of mine, her son made a bunch of these for the school for the deaf and blind, they are used as a prereader for brail. They are made by using a 16inx16in plastic pegboard found at your local hardware store. After choosing your fabrics, each should have a different texture you can design whatever you want. My son LOVES pirates so I chose a pirate ship. You simply cut and hot glue it together. It costed about $5 bucks for the board and I got the fabric from my friend but finding scraps at the local craft store is easy and cheap. I still need to add the sea shells but once I do his will have around 28 different textures. There are rough ones like sandpaper, fluffy ones like the cloud, bubble wrap is bumby, silky, smooth and so much more. It was an easy project and Carson really likes it.

A small victory in a daily battle!

We attended Miss Nephi this week to watch my niece, I came totally prepared with fidget toys, Ipod to provide distraction and drown out the loud clapping noises, my moms Ipad for a games, books, ect... I really felt prepared.

Just as I had anticipated Carson did great at first, he loves taking in everything the lights, the sounds, the show, however once his sensory needs were fulfilled he became bored with the experience and started to look for other ways to entertain himself. Before long he became overstimulated, during the clapping and yelling for the contestants he started getting upset, telling me he HAD to leave NOW, he started breathing fast and his heart was beating fast. This was about to become a full blown panic attack.

Previously I would have responded in 2 ways, either tell him he is fine and make him stay which would have no doubt resulted in a panic attack and us leaving OR taken him out and allow him to calm down.

THIS TIME! I sat him on my lap and gave him a big tight long hug. This gave him a good amount of proprioceptive input and helped him center himself again. I covered his ears and sang softly into them you are my sunshine, his favorite song, that covered the clapping and screaming and gave him soft predictable auditory input. Then I offered him a fidget toy, I knew he was way to upset to get the benefit from it now but it let him know they were available and he could have whichever one he wanted. Then I got out the Ipod and let him listen to music which drowned out the clapping and screaming which was not predictable and very overwhelming for his auditory system. I then sat him on the floor between my chair and the chair in front of us, it was dark and quieter and the smaller space made him feel more comfortable. He played with the fidget toys, the Ipad, and other things I brought but he DID NOT have a panic attack! We didn't have to leave! He finished the entire show with no issue, he was a bit on edge, but nothing extreme! I was so excited, this was a small victory and it felt GOOD!

Fidget and Oral Motor toys!

During our first OT session they game me a few lists. One was to help Carson stop biting and picking his lips, he will bite or pick them until they are bleeding and have big holes or scabs on them. The items are supposed to provide strong oral input and fulfill those needs he is seeking by biting or picking his lips. So the Oral motor items are to help him stop that. The Oral motor items are the pinwheel, balloons, gum, and sour candies. They were just a few items on the list. He loves his new toys!

One of the other lists was a proprioceptive input list. Proprioception is the input received by the muscles and joints of the body. These receptors tell the body how much muscle to use to stand, walk, etc... Carson seeks input in his muscles and joints constantly. To get this he will climb, jump, roll, fall, run into walls, or do whatever it takes. The toys on the list provide a subtle input and should help him be more calm and focused in situations that don't allow him to run jump and be "crazy". They are toys that he can "fidget" with by pulling, pushing and mushing, they provide input to his hands and help keep him "centered" and able to focus. The idea being that if he is receiving a subtle proprioceptive input that he will not seek the more active forms until the appropriate times. The spider is filled with beads in the body and is stretchy. Along with the magnets its one of his favorites! The magnets can but pulled apart and put back, he loves pulling them apart and trying to keep them apart, he loves them because he can twist and pull them and try to keep them apart. The ball and be squeezed, pulled, and played with, the gecko is the same. We also found a ball that is plastic and weaved together that he likes to stick his fingers inside the holes. We are still keeping our eyes out for new toys! The notebook is his book for notes, ideas, and a journal.

Since he has been using them he does tend to be a little calmer and will even ask for them. He likes them during times he has to sit and be quiet or calm. His preschool teacher noted him playing with his hands during class so I will start sending one with him for school. I have also found him smelling, licking, and chewing the toys, another sign of SPD he is seeking the input and because oral input is very intense (that's why babies investigate with their mouths) he tends to put a lot of things in his mouth or smell them. Its a learning experience everyday! I am waiting to ask the OT if that is OK for him to do or if I should stop him.
While reading "the sensational child" I ran across a great Oral motor and proprioceptive input activity. Eating applesauce through a straw. Sucking thick food through a straw gives Oral input and using those muscles is proprioceptive! He thought it was pretty silly!

And finally Gavin, he is great for proprioceptive input, he loves to run, play and wrestle with brother!
Just a few new OT toys to get us started on the road to a self-regulated and calmer life! Having a sensory seeker I feel like I need an arsenal of items that provide oral, smell, proprioceptive and all other kinds of input at all times because I never know what he will want or need at any given time. I need a bigger purse!