July

The EI coordinator called me today. She said "Hi Mrs.Johnson. I was calling to let you know that your therapists will not be coming out to see J this week."

You don't say?!?! They come on Mondays. Today is Tuesday. Even if they didn't call me, I think I'd have figured it out by now! I didn't tell her that though...hehehe. Just thought it! I told her that I spoke with his therapists and they explained the lack of funds issue. She then asked me if I had thought of any alternative routes for J temporarily. I asked her if there were any non contracted therapists through First Steps that would be willing to see J, but she said not at the moment. Unfortunately we cannot afford to pay out of pocket for the sevrices, and I have no idea why they are so dang expensive in the first place?!?! So no. I have no alternative. The good news (I guess??) is that they will pick him back up in July once they get their yearly funds. I asked her if she was certain that J would be picked back up and she assured me that he would be since he was already actively receiving services. So he'll miss 2 months of therapy. I am going to do what I can to keep him on track, but I'm really worried about the occupational therapy. It's just extremely hard for him and he was finally started to respond to the sessions. Now I know he will regress and it will be hard to get him back on track. Everyone is suggesting that I just do what the therapist does, but trust me when I tell you it is not that easy. The main reason is b/c any child will work better with someone other than their parents. It sounds crazy but it's true. It happens all the time with my photography business. Parents tell me that their children HATE to take pictures, but I never have a problem getting great pictures of their kids and most parents leave the sessions saying "Wow s/he NEVER did that for me!!" Well, I'm a new person who only comes around once in a while, so it's intruguing to them. Same thing with J and the therapists. He knows them, but they only come once a week so it's almost like a treat to them and he doesn't mind spending 45 minutes with them. The other reason I know I cannot completely take over OT is b/c it's so rough for him and rough for me to watch him. Occupational therapy generally helps him with things that he normally should have no problems doing daily. She's helping him to be able to successfully perform his occupation, which right now is to be a child...laugh, play, learn, grow up...But it's hard for him since he's dealing with the sensory issue. He extremely turned off by different textures, he hates to wear clothing with tags, he doesn't eat, he can't sit still, he bangs his head when he's frustrated (although his diet change has decreased that tremendously), he falls ALOT, among other things. But she helps him to deal with these things. She started off working with his feeding issues. He went CRAZY!!! It was traumatizing for him and it made me cry to watch him go through that. I planned to ask the therapist to hold off on feeding therapy for a while, but she decided to stop on her own b/c it was just too much, so that's definitely something I'm not willing to do on my own. For the past few weeks she's been working on him with different textures. One that repulses him the most is dry oatmeal. He cries and gags when he has to touch it and usually gets up and runs to my lap for comfort. I NEVER want to be the person on the other side of the table who is making him do something that he doesn't like. I know it will help hima nd it's what he needs, but I'm his mother so I want to remain the person he can run to for comfort. So taking over OT sessions is not going to be an easy task.

I do, however, plan to continue doing sensory exercises with him. Those should keep him close to where he needs to be once the OT comes back. I ordered him a weighted vest which is simply a vest that I can add weights to. The extra weight give him added pressure since he is a "sensory seeker". It also helps his balance and could help with muscle tone, but that's not one of his issues. He hates to wear it b/c it makes him fall alot, but when he learns to not fall then that's helping his balance. I also got him a chewy tube, which is basically a rubber teething toy shaped like a T. When I gave it to him, he immediately started chewing on it. The tube stimulates his oral muscles and help him to develop oral motor skills, so hopefully he won't have any problems chewing adult food once he starts eating more. Also, the chewy tube can work muscles that will help develop his speech more. I often find him watching TV and chewing away on the tube. I may have to carry it along when we go to noisy places b/c when he gets nervous he chews on his shirt (or my arm!!) so I wonder if the chewy tube would help to calm him. Other things I can do can easily be masked as games, like ring around the rosey, jumping up and down, hand walking, etc. Anything to get the senses going. All of that will help him with the little issues, but I cannot and will not touch the bigger issues. Hopefully he will hang in there until July.

Positive Strides

There have been far too many nights that I've gone to bed feeling like J and I didn't get to spend enough time together. Being a 2 yr old with sensory issues, he almost has NO attention span, does not want to share, does not want me to help him with anything, and melts down at the drop of a dime. Only his melt downs include a blood curdling scream (not exaggerating), slapping himself in the face, and banging his head on the wall. Being an overwhelmed, frustrated mother, I decide that it's easier to just let him play alone than to deal with the wrath that results when playing with him. But that didn't work for him. I want to interact with him. I feel like he's at the age where he needs to get prepared for the learning envirnoment. I can't keep waiting on the EI system to help b/c they take the hurry up and wait approach. We are going on 2 months of waiting for an OT which he so desperately needs right now. And lets not forget about the feeding therapy he needs but EI doesn't seem to agree. I will keep fighting for him until he gets the help he needs. And in the mean time, I will do what I need to do to help him...and myself.

My main goal is to drastically decrease his TV time. I still let him watch Dora and Yo Gabba Gabba after breakfast, but then the TV goes off and Disney Radio comes on. This week, I started doing small learning sessions with him. The only thing this "session" requires him to do is stay seated. I do several different activities with him, and while I don't expect him to participate, I expect him to stay seated (or in his case, at least have one foot on the chair!lol). So we pull out a fold away activity table my mom got him for his birthday. This table only comes out for "school" or activities, so he loves to sit at it, as oppsoed to his Elmo table set that stays out at all times. He immediately sits at his table and waits for his activity. We start with arts and crafts. Today I traced his hands onto construction paper and let him color them in. Next, I pulled an activity sheet from his preschool activity book I purchased from Target and showed him how to make curved lines. I traced over the curved line examples and I didn't expect him to be able to do it, but I wanted him to watch me do it. Well, he made 3 curvy lines!! WAY TO GO BUDDY! So after that activity, I gave him a coloring sheet to color on while I pulled out his animal picture book. I found that he needs to have another option available to him just in case he is not interested in what I am doing. So in this case if he didn't want to see the animal pictures, then he could just color...no tantrums involved! So I went through the pages and named the animals and made the animal sounds. For the most part, he colored, but he did pause for his two favorite animals, a dog that says "woo woo" and a lion that says "Woooaarr!!" lol. Good enough for me! Next I do his ABC flash cards. For some reason, everytime I pull these out, he hides his face behing his construction paper. Every time! And peeks out every now and then with a big smile! After ABC flash cards, I sing the ABC song. I know eventually he will sing along. After the ABC song I read a story for the day and he always pays attention to that part. And then his learning session is over. 15 minutes tops and he has been well behaved so far. But please don't let this post mielead you into believing he sits still at the table the entire 15, b/c he doesn't. Several times I have to tell him, "Don't rock in the chair baby, you may fall" "Sit down for momma." "Sit down on your butt, J." "Don't throw your papers on the floor." "You threw them now you have to pick them up." "No screaming, use your inside voice please." He enjoys the interaction, so he does listen well for the most part, but he has fallen out of his chair a few times. Also, if he isn't standing on his chair, lying across the table, or playing peek a boo under the table (all while I'm still reading to him!!) he is just scowling at me! It is hilarious to look over a book and see that cute scowl! But I promise I don't laugh. I keep reading! After the lesson we yell "SCHOOL!!", J throws both hands in the air and says "Cool!!" I wish I could take the credit for teaching him to say it so enthusiatically, but anyone can tell by the way he looks at the TV when he yells it, that he learned it from WORD WORLD!! Then he helps me to put his table away and we play Ring around the rosey. He needs this after sitting still (or trying to) for the past 15 minutes! He loves it!

Then I have lunch with him and we go for a walk, WITHOUT THE STROLLER! Today we walked around 2 cul de sacs. J's face was lit up. He would run in front of me and then stop and I'd say "Jump, Jump, Jump. Jump" to the beat of one of his favorite Choo Choo Soul songs and he'd start jumping and saying "jump"! Then as we walk we passed some house with dogs and whenever the dogs barked he would yell "DOG" and stop in front of the house and bark back! Then whenever he sees a big truck, first he yells "CAR!" I say "Very good J, but that's a truck!" Then he says "Choo Choo!!" He can't pronounce train yet, so he calls his trains truck. Considering I have yet to meet a 2 yr old who can say truck without sounding like a sailor, I think I will accept that for now! We got home and J was ready for his nap.

Right now, I don't expect a huge response from him right away with the sessions we have, and I also expect him to get frustrated and not want to cooperate on some days. But I know that with consistency, he will learn. And that brings me to my attention whore news I want to share...My baby finally figured out his shape sorter block!! He has never had the patience to get the right shape into the right hole. He would just grab any shape and try to pry it into any shaped hole and when it wouldn't fit, all of the shapes and the sorter block would go flying and he'd have a huge fit. Last night he came up to me with the block asking me to empty the shapes from it. I pulled the shapes out and he sat beside me and intently looked at the shape in his hand and then looked at the block to find the right shape. He turned the block until he found the correct shape and pushed it in. The look of achievement on his face melted my heart. I made the biggest deal out of it! He then went on to put in two more shapes. He only has the patience to do 3 -4 shapes at a time, but no matter what shape he has in his hand, he can match it to the shape on the block...even the star! I am so proud of him!

I do hope that this post helps anyone who is surfing the net for activities to try with sensory kids. I borrowed a book from the library full of activities to do with toddlers. I immediately turned to the page with activities for 18-24 months old and there were none that are appropriate for J. The activities required the child to have some sort of attention span, coordination, and the ability to talk. It's too much for J. So I brainstormed and came up activities for him using sensory toys and exercises. I will be posting here with the ideas and techniques I use for J and how they help him.