Saturday, June 5, 2010

I really need to attempt to get in here more often. I keep missing so many little rewards that I need to post. Mason has started his new school this past week and I think it will work out very well for him. Of course "Mama" was a nervous wreck. I just kept thinking of how hard it must be for him to not be able to communicate his needs to new people. He will have his speech therapy on Thurs, and OT on Tues while at school. He gets additional therapy at home on Mondays and Weds. ABA therapy on MON & Weds, and Speech and OT on Weds as well. I know it may seem like quite a bit, but I have the most incredible team working with him. All have a playful approach and are on the same page. We are so very fortunate for this.

Mason has not yet repeated his "Thank You" that I am dying to hear yet. He did say "shoe" to my buddy Cassie, but I have not heard it yet either. It seems like he likes the word "Go" the most and uses it constanly. I know I need to just be patient, it will all come out eventually. I have taught him to make kissy sounds and it is so adorable! He seems to like funny noises and imitating things better than proper speech. The food issues are still a major problem, but we do have an incredible idea up our sleeves. ( which I will film and post when this occurs ) Here is a kissing video for you!

Monday, May 24, 2010


Sorry I have not posted in a while. Between therapies and every day life sometimes it can be rather difficult. I am having a major case of the Blahs today. As many of you know, Mason said Thank You to one of his teachers about a week ago. It was clear as a bell. No, I have not heard it since.

Most days I am on top of the world and the most positive person you will ever encounter. Other days are really, really, hard for me. I generally feel we will beat this confusing puzzle called Autism. Today is not one of those days for me. I know it is in him some where and it is such a challenge to get through to him. I get terrified that I am in some kind of denial and am having false hope. I know that this is just the normal process of grieving for my son. I am only human.

He continues to be his usual happy and fun loving self and for that I have to remind myself to be eternally grateful. Today is a 2 hour therapy day for Mason. We have started ABA therapy in addition to his speech and occupational therapies. This cover a multitude of things for him. Speech, sensory, and mainly behavior. All of his therapies have been increased. We will meet with his service coodinater on Weds along with his therapists. I am going to keep on pushing and plodding along. I will ask for the maximum amount of therapy that I can possibly get. With the First Steps program, the kiddos are covered by the state until they are 3. It is such a blessing to be in a state that has this program.

Masons last day of school was last week. It is so hard to part with the teachers he had. While this was in no way a specialized training school, he had two incredible teachers who really took the time to work with him. They were amazing. I am so glad that his final gift was to say "Thank You" to them. It is priceless to me and I am sure to them as well.

Even though I am having a bit of a day, I do want you to know how quickly these days can turn around. One little action, be it eye contact, doing a task, or maybe trying to say something. It can be the biggest and most awesome feeling in the world. My day can change so quickly so please don't think I am whining. I still am the same positive person that you all know!

I do want to say, that if you have a child with a disability of any sort. Get help ! Find a support group, get therapy. Do whatever you have to do to help yourself and your child. I have an awesome therapist and a wonderful support network. It is out there some where. You just might have to dig a little bit. Of course , I am always here and willing to help you find resources . Please feel free to contact me at any time. If I can just help one person, this journey will be worth it!!!!

Saturday, May 8, 2010

With SID and a non-verbal child, you never know what the day might bring. It is so difficult to anticipate Masons needs on a daily basis. Some days it is quite humorous, and some days it is so very frustrating. He has some rather odd issues with things. Learning those needs is a difficult task. Some days he needs deep pressure on his head and body to calm him. Other days he may need bouncing or vibration techniques. Eating is ALWAYS an issue with him. Textures and flavors can be challenging.

Mason can literally look at things and gag and vomit. Dry macaroni noodles, and cereal with milk ( like Wheaties and Honey Bunches Of Oats ) are a few of the things that he has seen and vomited just from looking at them. It is very hard to understand, but facsinating at the same time. I will post a few of his therapy tools soon so you can see what we have in our daily repetoire. (sp)?

I will say this, he has always been a climber and he does this with grace. A lot of children on the Spectrum are known to be clumsy. He really is not. He can run like you would not believe and climb the highest of high. We have had to confiscate so many things in our home because of this. He is quite taken by lights and ceiling fans. He will stop at nothing to get what he wants.

In our living room we have a ceiling fan and of course light switches. We had to remove our end table beacause of the climbing to turn these on and off. Well, he figured that he would just climb on the arm of the sofa to get to them. We moved that sofa twice. His next move was to pull up his cozy coop and climb on the window and the roof of it to get to the switches. Never mind that it is on wheels, that does not affect him either. (total dare-devil ). Cozy coop gone! It is now outside. Score one for Mommy!

That being said, on to the kitchen table. Our table is higher than counter height, so it would definatley be a challenge for him. Not Mace. Next came the high chair. Did you know that they can climb up the back as well at the front? I certainly had no idea. Where ther is a will, there is a way. High chair gone! Now we use a booster seat and all of the chairs have to be put on top of the table after meals. (The other 3 chairs are conveniently located in various bedrooms )

On to my kitchen Island. Mason recieved a 3 in one trike for Easter. (stingy Mommy did not give him the option of candy ) Lord help us if he was on a sugar high. The trike was great.............. for climbing on the seat and getting on the island that is. This was also confiscated. Our newest addition to the climbing has been the crib. Mason can now get out of that as well. We opted not to try a crib tent since he would definatley pick a fight with that one as well. They seem a bit dangerous to me.

We are now into a toddler bed. Naptime has been pure hell. The boy who is first to take a nap at school now won't go down until 3-4 p.m. We have installed a 36" high gate and have removed everything from his room. Of course we forgot the blinds, diaper pail, and wipe warmer. Next will be the glider and ottoman. I am starting to use structure and routine now. Play it out instead of cry it out here. (even though the toys are not accsessible) I found him sleeping on the floor this afternoon. But it did work.

Will keep you all posted . I have tried to blog since Sat. but it is hard to get it in latley. There's plenty more and new things going on here all of the time. I sure do love this boy of mine!!

Friday, May 7, 2010

As I have said before, there are so many new things and opportunties happening for us, that I have to bounce back and forth. Today we have a new Speech Therapist coming. She is also trained to work with sensory issues as well. I cannot wait to meet her. But I need to tell you more about Mason and how we got to where we are.

Rose made sure that we had some evaluations done through Missouris First Steps program. A wonderful program, BTW. We had to go through all of the motions beginning with a hearing check. (We could only wish it was hearing related. He has had tubes since he was 5 months old ) They are very thorough in evaluating your child. I wish every state had them to work with.

It was very recommended that we start speech therapy as quickly as possible. We started in Jan. Unfortunatley, Mason is a fly by the pants little guy. He honestly cannot sit still for 30 seconds. You could'nt even get through 2 pages of a picture book with him. Discouraging for me. I was an avid reader before kindergarten. The therapist asked if it was okay to bring in an Occupational Therapist.

Fine with me! I had been getting so frustrated. I would hear about everyone elses baby bringing them books, etc and it would kill me them be able to share them with Mason. Maybe she had the answers we were looking for.

Enter Stephanie. She literally walked in and calmed my son with pressure techniques. While I filled out another endless evaluation , she was applying ankle weights and a weighted vest to my son. How odd can this be ? He was suddenly grounded, and actually sat for the speech Therapist to work with him.

We found out the next week that he had Sensory Intregation Dysfunction. On the Hyp0-sensitive side. I will post a link for this as soon as I can figure it out. It is quite interesting to read about. Basically with Mason, everything hits him at one time. Sights, sounds, smells. You get the picture ? He cannot seperate these into one thing which is a whirlwind of things going through him at all times. Great! We had an answer here. We can just figure this out and he will be okay.

But there is more.....

Wednesday, May 5, 2010

It is so hard to know where to start and stop with this blog. I am totally new at this, so please bear with me. Mason and I have so many new experiences on a day to day basis that I will have to bounce back and forth on the background. I want you all to know the "real" story so to speak. Some days it will make you laugh out loud, other days it might make you cry. Either way, this is such a good way for me to get my feelings out , and if it can help just one person it will be so worth it. Hang in there, this will be an incredible journey for us.

As I stated many a time, Mason is a happy, funny, and very loveable little guy. He has a milloion dollar smile and an incredible laugh that is infectious in nature. How could it by my son ? When I first thought of Autism, my vision was of a child sitting alone in a corner rocking and totally un-communicative. That is not my son by any means. I was totally unaware and uneducated on Autism. The Autism Spectrum is so broad now. You will probably learn as I do.

Right now as I type, Mason is still asleep. I like to call this time "The Calm Before The Storm". We never know what joy or challenges each day will bring. This morning Mason has his Speech and Occupational Therapy. We grasp at the new sounds or a bit more eye contact. The feeling is amazing when you get it. You ride the highest cloud and you can fall to the lowest pit so easily. We are learning to grasp those moments . They are so precious to us. One step and one day at a time.

Tuesday, May 4, 2010

A Little Background..........

I always knew my son Mason was unique. Maybe it was because of the hard time I had conceiving, maybe it was the fact that it could really possibly be true that I was actually going to become a Mom after so much trying. It all just seemed to good to be true. I was actually going to become a Mom!

June 30th 2008, my dream came true. Mason made his way into the world screaming his beautiful little head off. I was so overwhelmed the first time I laid eyes on him. He was so perfect. 10 fingers, 10 toes, all parts there and hearing intact. Yet as a Mom, you always worry. So of course within the next couple of days I started looking at his eyes, "Are they shaped strangely"? " Could he have Downs Syndrome"? Any strange genetic issues? You can bet if it exsisted, I was imaging it. I really made myself crazy that first year.

As a child, I was a first class hypochondriac. If somebody was sick, I was next in line. I even had my own copy of The Merck Manual at age 12. And yes, I had most of the diseases in there! Even the exotic ones like Kuru. Never mind the fact that I had never been out of the U.S. . Or somewhere in the depths of Africa getting a disease that comes from eating the brains of an infected person. Anything was possible. I did finally outgrow this interesting obsession, only to imagine that there was something wrong with my own child.

I finally started to relax after countless excellant reports from Rose, my Parents As Teachers adviser. I would say around 13-15 months of age that things started to seem different to me. We were no longer ahead of the game. Our evaluations suddenly started to dip. Further and further. Everyone was passing us up, the little babbled words like "mamamama, and dadadada" were gone. Mason had no focus and was a very busy all over the place type of guy. I told myself he was fine, he is so very happy and loving. He's just a bit behind, and we will catch up. I am probably not doing somthing right, or not doing enough with him to help him learn.

Yet something just kept stirring in me like a sixth sense of impending doom. After all I had already spent one year like this, what's one more? As more months went by I approached Rose to take it a step further. Lets get some speech evaluation on him, see if he might qualify for some help. Communicating is horrible when you cannot understand your childs needs. Of course, in the back of my brain I kept thinking Autism! Autism!Autism!