Signs of more progress. OT and Speech Therapy 06/10/15

I was not sure how this visit would go today.  My son spent the weekend howling in pain from teething.  He is getting his two year molars right now and he is not enjoying it at all.  He also came down with a pretty nasty cold that resulted in a low grade fever. He never went about 101 which is good, but he was awfully miserable.

C. showed up and had A., a new COTA with her today.  I discussed the Sensation Station with them while we waited for M. the Speech Therapist to arrive.  C. was pretty excited because one of her professors opened the Sensation Station.  We discussed how my son is saying "go car" and how he is climbing now, by using me as a jungle gym.  M. showed up shortly after C. and A. arrived and I told them all how my son was under the weather and that I wanted to at least try to see if we could do the hour session.

My son started crying when C. and A. went in the living room. This was new behavior and it concerned me.  He shied away from C. when she sat on the floor to engage him.  He was also wary of M.  I could see him being shy with A. since he never met her before, but C. and M. he has seen multiple times.

My son has sensory balls, similar to the image below.  M. started the session off by rolling the ball along the bottom of his feet and down his arms.

This calmed him down and M. and C. played with my son using his sensory box. Because he settled right down, M. suggested doing deep pressure massage, or the ball on his feet to settle him down when I need his attention.  I think we will do this when we do ring bearer practice. He normally likes to just empty it, but he is learning what comes next, and he filled it back up.  

Because my son was irritated due to teething and being a little sick, M. and C. let him play at his own pace a little bit today.  

C. told me that there is going to be a sensory play group at the beach this summer.  I am not sure if we will be able to attend, but I think that is an excellent idea.  

Because my son was literally howling in pain over the weekend due to teething pain, I broke down and bought him some teething gel.  C. said many parents don't use it because sometimes kids swallow it and it numbs their throats.  She suggested  in addition to massaging his cheeks, to give him popsicles.  They make mini popsicles that would be perfect for him.  I told her I have been freezing fruit, like mangos as well and he seems to enjoy that.  

M. and I were talking and she mentioned my son paying attention to the world around him more.  I asked if that is what she wants to hear more about. When she answered positively, I told her that we were walking and my son saw a big black ant cross in front of him.  He wasn't sure how to respond, he just stood on the sidewalk with his arms raised wiggling his fingers. His eyes were wide and he wasn't moving.  I told him it is just an ant and I bent down to point at it.  My son also crouched down, eyes wide, staring.  He also reacts more to sirens and especially motorcycles.  Even if he doesn't look straight at them, he raises his arms and wiggles his fingers with his hands moving.  Or he stands still and shakes a little bit.  He really likes the sounds motorcycles make, he tries to find where it is coming from.  Over the weekend, we went to  a friends house.  My son engaged in back and forth play with an 18 month toddler by passing stuffed robots back and forth to him.  The two toddlers went on a little wagon ride around the house and my son maintained eye contact with him, and did back and forth play the whole time.  For my son, this is big.  There were four boys in total ranging in age from 18 months to 12 years old.  My son didn't really play with any of them more than the back and forth play with the baby, but he did watch them. In the past, he would not acknowledge other children.  At one point, the 18 month old and an eight year old were on a trampoline and my son wanted to join them.  He was fine until he realized I was too big for the children's trampoline and could not join him, at which point he started crying.  But he wanted to be near other  children.  Later in the evening, my son wanted something the 18 month old was holding so he walked over to him and grabbed it out of his hands. M. said she likes bad behavior. She said my son was aware that he wanted the object, he was aware someone else had it, and was aware of how to get it. That is three levels of awareness. She was really happy that he is progressing. 

This was a really good session as always.  Looking forward to next week. 

My son, the ring bearer.

My friend L. is getting married in October and I am very happy for her.  Her fiance is a wonderful man and I know they will be happy forever.  L. wants to have a moderately sized wedding, and she wants to have a full wedding party including a ring bearer and a flower girl.

L. is a spiritual aunt to my little guy and he loves her.  We will actually be signing paperwork soon that in the event me and my husband were to pass away, L. would become his guardian.  She has been close to him since he was born.  Before the wedding was announced L. said my son would be her ring bearer.  I got a little nervous because he didn't start walking until last December so I thought for a while he might need a wagon.  Now the wedding date has been announced, L. and I spent a little time hanging out and looked at suits and tuxedos and discussed her wedding colors.  I am so excited my son will get to be a part of her special day.

I am nervous though because of the developmental delays.  He does not respond to verbal instructions.  Also, he lives in his own little world. He might not want to walk down the aisle, but wander around the venue.  He might not want to give up the rings when the time comes.  He also gets bored with objects easily and when he does, he throws them over his shoulder and walks away. All I can see is my son getting distracted, tossing the rings, and me crying and apologizing like crazy on my hands and knees scrambling to find their rings.  L. is going to have him walk with a 10 year old flower girl so she can instruct him down the aisle.  We also will be doing ring bearer practice at home.  I have asked L. if we can have him carry plastic rings so if he throws them it won't matter.  I am very much looking forward to all of this for him, and he is incredibly photogenic so he is going to look great in her wedding photos.  Also L. and her fiance know that my son has some limitations so I know they won't get upset.  I think this is just my overthinking and everything will be fine and go smooth.

Does anyone have any tips for us?

Hearing Test 05/18/2015

This was a pediatric hearing test done at the Rhode School For the Deaf.  M. the Speech Therapist suggested we get a hearing test done to rule out hearing problems as a reason for delayed speech.  A. asked if we wanted her to go.  Since she is my son's Early Intervention Service Coordinator, I feel she should come to all our specialist appointments.  Not only is she an advocate should we need one, she is also an impartial third party.  She would definitely ask us how the visit went, but I feel that I would give her opinions, not just facts and she needs facts to add to my son's record.


When we met the Audiologist we gathered in his office.  He asked who we all were and why we were there. He then had me and my husband take our son into a sound proof room and sent A. into the lobby.  My son sat on my lap and the Audiologist gave him a stuffed animal to play with.  With my son distracted, he checked his ears and said they looked fine. Being nervous, I asked how can they look good with all the potatoes growing in there? He said a few potatoes were fine.  He then did a small test to check the anatomy of the inside of my son's ears.  The scan was fine.  He then conducted the same hearing test given at birth to all children born in the state of Rhode Island.  My son passed. The next phase of the hearing test was the Audiologist left the room and went into a room directly in front of us.  I was reminded almost of a sound recording booth. There was a large sheet of glass in front of us.  We could see him, but could not hear him unless he activated a microphone.  He could hear and see us.  In our room there were three speakers. One if front of us, and two to the sides.  There were also three light boxes in the room. One directly in front of us with Mickey Mouse, one on the left with Donald Duck and one on the right with a third Disney character.  My son was still clutching the stuffed animal.  The Audiologist would activate the microphone for the speakers in turn, then flash on and off the light box.  My son was totally unimpressed and ignored everything except for the stuffed animal.  The Audiologist then asked if I could take the toy away. My son took that opportunity to toss the toy on the floor.  The Audiologist proceeded to say my son's name at different volumes through the speakers. For about half a minute, my son was responsive. Then it was all over.

We went into the lobby to join A. and wait while the Audiologist prepared the results.  When we gathered in his office, he asked what my son's developmental age was. A. said her agency does not assess developmental age, but stated my son scored 5 out of a possible 35 on his communication assessment at our annual review. That assessment was based on an average 2 year olds developmental level.  The Audiologist said the results were inconclusive. Because my son's ears are anatomically fine, he doesn't believe there is damage to the ears, but my son was incredibly unresponsive to the stimuli. He said if I want to 100% rule out a hearing deficit, we can sedate my son and then do a brain scan. I am not even a little ok with that.  I think at 2 years of age sedation for an unnecessary procedure is totally not ok.  I know for a fact my son isn't deaf.  When he is deeply napping, when I go to wake him up I rap loudly on his bedroom door. He immediately gets startled. I believe there could be some pitches he might not hear, but  I don't think he is deaf.  The Audiologist suggested we come back in a few months for another hearing test, no sedation.  He then gave us copies of the inconclusive results for the Neurologist, the Speech Therapist and the Pediatrician.

My mom has been reading up on autistic children and autism in general.  Based on several of the behaviors my son displays, I think he may have autism.  This is not a bad thing, but I think if he has it, then in order to help him succeed we need to mold his therapies around his abilities.  My mother is currently reading The Autistic Brain by Temple Grandin.  One of the topics discussed is hearing and autism.  Some people who have autism can only hear vowels, other only consonants.  Other people with autism can only hear certain tones and pitches.  Other people with autism are so into their own mind, or activity, they can't hear you.  I asked A. if she feels my son might be displaying some of the symptoms of autism.  She danced around her answer.  She finally said we can discuss my concerns with the Neurologist or if I can't wait until August to see him, we can call a different one.  I told her I understand she can't diagnose, but based on her experience does she think I might have an autistic child. She was quiet and hesitant and then finally said she has not worked with enough autistic children to give an opinion.

I know my son has sensory processing disorder. Maybe that is all we are looking at. But I want him to succeed and to live the happiest life he can. Although I think we are into labels, if I knew what we are dealing with, I feel I could better help him succeed.

4/30/15 OT/Speech Therapy/EI visit

     Wow full house today.  We don't always combine this many therapies, it just worked out.

     M. the Speech Therapist was scheduled to come at 10:30. C. the COTA was scheduled for 11:00.  My son has a lot of electronic toys and he would rather play with them than interact with the various people who come to see him and I am really frustrated by it.  He only has a year left with these services and I want to take advantage of them. I moved all his electronic toys from the living room to the hallway that connects the kitchen to his bedroom.  Ten thirty came and went which was making me nervous because M. was supposed to be coming.  Ten forty sill no M. so I checked my calendar because maybe I was wrong. Shortly after 10:40 M. knocked on the door. She said she saw C. outside  and was going to come upstairs with her, but after 10 plus minutes realized C. was just early.

     I told M. I hid all the electronic toys and she was really happy I did that. She said she would take the batteries out of her kid's electronic toys and then they were just toys.  My son would at first not engage with her and instead held on to the front of the couch and danced.  I asked him if he could dance with M.  M. picked up a puzzle and the two worked on that for a little bit. My son mostly wanted to walk around so M. kept distracting him.  Since he wanted to play on the couch, she picked up a ball and put it on the couch and rolled it to him.

     I did get to tell M. about "gotta go".  (http://momlovesscifi.blogspot.com/2015/04/my-son-just-made-more-progress.html) She was duly impressed.

     At 11:00 C. the COTA and D. a student arrived.  Sometimes EI/PT/OT/ST will bring a student. They always ask prior to the visit if it is ok.  I am pretty laid back and have never had a problem with students coming.  I do have a tiny apartment (about 400 sq. ft.) so we were kinda becoming a little tight in my extremely tiny living room.

     What I like about having multiple services is that they can double up.  It makes my life easier.  Although for someone with social anxiety is can be overwhelming sometimes, they are not here to see me so it makes it easier in that respect.

     When C. arrived we discussed how my son is doing with baths.  She had suggested in the past that he gets placed in the tub first, then draw the water with him in the tub.  I was sceptical at first, but it worked.  He was fine until his hair was washed, then he got upset.  C. asked if he ever got laid down in the tub to rinse off and no he hasn't only because the tub is so traumatic that baths are kept as short as possible.  She said laying him in the water will rinse out his hair and some kids have an easier time with it. 

     M. and C. played with my son with his sensory box and they played with puzzles.  M. noted when given two puzzle pieces my son chooses quickly and doesn't hesitate like most kids.   When my son got frustrated and was done, they made him use sign language to signal he was done.  He played with D. with his toy where you push the beads along on wires.  M. noticed he would rock from foot to foot and asked if he does it with shoes on.  I really couldn't remember because we primarily wear shoes outside.  I put his shoes on and he continued doing the same thing.  M. played with sensory balls, the kind with rubber spokes all over them, by rolling them on my son's head, neck, and back. He loved it. Since bath time is so awful, I asked if it would be ok to bring the ball in the tub and massage him with it in the water.  They said sure.  M. even suggested textured bath mats.  M. and C. then engaged my son by having him play ball with them.  M. said to create opportunities for engaging him like this.

     At 11:15 there was a knock at the door.  It was A. the EI coordinator.  She was late because she had an appointment in another town.

     My son was mouthing a lot of toys and C. asked how brushing his teeth is going.  It is going well, except now he likes to bite the bristles of his tooth brush.  She suggested getting an electronic toothbrush and just rubbing the outside of his checks to give him the oral stimulus he needs.  She asked if he has a straw cup or a water bottle because that does the same thing.  He does have a water bottle with a straw but I don't know how to teach him to suck. She told me to put water in it, then drip a few drops on his mouth by holding the bottle upside down. He should open his mouth for the straw and once the straw is in his mouth,  run my fingers along his check to facilitate sucking. We are definitely trying this.

     M. commented this was an incredibly successful visit and credited my hiding the electronic toys.

     I am glad of our progress and looking forward to our next therapy/EI visit.

First Occupational Therapy Visit 04/13/15

     Mom fail, I completely forgot OT was coming yesterday. We went for a nice long walk, ate a late lunch and then my friend called. I was putting him down for a nap and chatting with my friend when someone knocked on the door. It was A. the Early Intervention coordinator. I was kinda surprised and let her in and then she said C. the COTA was on her way and should be here shortly.

    While A. and I were waiting for C., we discussed my son's weekend. Friday we went to the park with a friend and her daughter who is roughly six month older than my son.  He engaged in some parallel play but was far more interested in the wood chips on the ground than the little girl.  We did try the slide, but he wanted to lay down, not sit so I went down with him. He was laughing his head off.  We tried the swings but it got bad fast so we stopped that.  Saturday he went to the park with my husband while I scanned 173 old photos for a family tree project. He just wanted to walk around mostly.  Sunday, we went to the park as a family. He loved the slide, but the swing he is now deathly afraid of.


    When C. arrived, we discussed my son's history with A.  My son walked around, picking up a toy, looked at it, tossed it, repeatedly.  We have the Fisher Price Stride to Ride Puppy and my son played with that and one of those wooden activity cubes.  He also played with this A's help.
     (image from ebay)

A. read him The Very Hungry Caterpillar about four times.  My son loves turning pages and after each reading he would just sit and turn the pages.

    C. and I discussed my son's sleeping habits.  C. suggested giving him milk before bed as opposed to at supper which I meant to try last night, but fell asleep my self and messed up his night time routine. (I have been not feeling well at all for the last two weeks.)  C. also suggested writing down my son's schedule and scheduling in two snacks a day.

    We also discussed the sensory issues my son has. I discussed the terror inducing swing experience of this weekend. C. suggested taking my son to the park and having him help me push and empty swing to get used to how it works.  She also said taking a toy and putting it in the swing and showing him nothing bad happened to it.  She also suggested us sitting together on a regular swing and slowly working up to swinging together.  We also discussed bath time. My son shrieks in terror while having a bath. I am not using hyperbole. It is not the whiny cry kids use when they don't like something, it is full on blood curling shrieking and howling.  He clutches at you when you try to bath him and he tries to angle every part of his body out of the water.  She asked what temperature bath he gets and if we adjust it. We have tried everything from freezing to lukewarm baths.   She asked if we adjust the depth of the water. We have tried from a tiny puddle up to enough to float boats around the tub in an effort to make him play in the bath. It didn't work. She suggested not filling the tub prior putting him the water. She said put him in an empty tub and then put the faucet on. She also suggested showering with him, or turning the shower on when he is taking a bath. I will try all her suggestions and write about how things go.

   We also discussed me playing hand over hand with him, which I already do.  We discussed our weekend with his cousins and she suggested I play with the kids to try to engage my son. I told her I did that. I got on the floor and played with the toys with the kids to show my son how much fun it was, but he walked away.  I told her we do hand over hand play with all his toys but when he is done playing with something, he is done.  I showed her a sensory box we have:

She likes this because everything has a different texture. She suggested mixing up what is in it. Adding tissues and scarves for example.  I am going to do this several times a week. I will add/subtract items.  On her way out she saw this puzzle in a stack of toys I want to get rid of

She said this is a good sensory puzzle.  Instead of getting rid of it, we will keep it now.


   All in all this was a great visit,  I think working with C. is going to help us a lot.