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!