My little Lily

We’ve had a pretty busy month.  After our RSV experience in January I’ve tried to keep the girls homebound as much as I could, but at three years old and now living somewhere without babysitting support, we have to venture out.  We’ve gone to the library for story time and we go to the park when it’s nice out and of course there are the weekly trips to the grocery store and post office.  I have to say that in general the girls behave themselves very well, and everywhere we go they strike up conversations.  One day we were in line at the post office and woman behind me had on patent leather shoes.  Lily looked up at her and said “I yike your shoes.  They’re pretty.”  And thanks to these little pink butterfly lunch bags my mom got them, as long as I load them up with snacks and their water bottles they are quite content to go out for a bit in the mornings.  It is so nice that they can now manage a ziploc bag or a snack cup with a top by themselves!  We haven’t had any play dates since before Christmas because our other triplet friends here have been sick on and off.  I’m hoping with the spring weather, the stuffies will go away and we’ll be able to get together with their friends again.

That’s one of the tough things about moving somewhere new.  I have to rebuild my social network and since the girls have just been in the hospital with RSV its not like I’m running out to gymboree, sunday school, or mothers morning out and meeting lots of new people.  The risk of them getting sick again like that is just not worth a couple hours of fun (or freedom).  So we do what we can at home.  We’ve set up obstacle courses in the playroom, a tent in the living room (which the dog thoroughly enjoyed), we’ve dug for worms, played in the sand box, gone on walks and most recently since it was 75 degrees last week…we got out their swimsuits and played with water and buckets and a huge tupperware storage bin.  They loved it!  I couldn’t believe how long it entertained them.  They’ve asked to do it every day since.  And Lily wants to wear her bathingsuit, even if we can’t go outside.

I was able to find a preschool for the girls.  Most of the schools around here are on waiting lists by the end of January for starting school in the fall, so I was a little worried.  I visited six total and after the 4th I was getting pretty worried.  I honestly thought I might need to homeschool them.  Lily has SPD (Sensory Processing Disorder) which manifests itself in many ways.  Finding a school with a director and teacher who understand SPD and are aware of what her needs are is very important to me.  Luckily, Lily is very communicative and can, most times, tell me clearly that she doesn’t like something.  There was one school that had “together time” where all the kids come together for singing and an “integrity lesson”.  Lily was clinging to me for dear life the entire time.  The kids were crammed into one classroom and were singing at the top of their lungs.  Lily just buried her head in my shoulder with her hands over her ears.  As soon as we left she said “I don’t yike that.  Those chwildwen were too noisy.”  So that was an easy one to scratch off.  Another one was just plain dirty and I don’t just mean toys strewn about, I mean the bathroom was disgusting!  And another, which came highly recommended, just seemed too big and while they said they knew what SPD was I could tell that they really didn’t.

So, school number 5 was such a blessing, it was a breath of fresh air to walk into a school with classroom doors open and children chattering, but not screeching.  The director and assistant director were warm and inviting and wouldn’t you know, one of the teachers has a child with SPD!  Jackpot!  Yay!  I was so happy.  The classes are limited to no more than 10 children.  They had already closed registration but there were two spots open in one of the 3 yr old classes so we signed up right then and there.  I am hopeful that the transition to school will be as smooth as possible.  They are ready, I can tell.  They liked looking in on the classrooms and the children, at one point Avery and Lily were dragging me down the hallway to get to the next classroom to see what was inside. 

I was relieved to be able to check that off the list and am confident that if it does not go well for whatever reason, I absolutely can homeschool them.  As long as I find a dependable babysitter who can give me a break once a week :)

The next item on our list for 2010 was to get Lily started with OT services again.  During my quest for the perfect preschool I spoke with our school district to see if Lily would qualify for services (which would be free).  As I spoke to the woman who does the evaluations, Lily kept coming up to me asking me questions and telling me about her babydoll.  The woman said “From what I can hear over the phone, she is not going to qualify.  The school district defines OT as a secondary service so the child to be significantly delayed and need other services in order to qualify.”  She said she’d be happy to come do an evaluation, but that I would be better off looking to my insurance company for a provider.

Our new pediatrician gave me a list of four groups, but recommended only two of them.  I called one which has a front office woman who is anything but pleasant to speak with.  When I asked her to tell me about the group she said “well, what do you want to know?” and then said the OT would call me next week to schedule an eval.  A week came and went so I called this lovely young woman back who said “yeah, she’s slowly getting people scheduled, she should call next week.”  I was thinking in my head “don’t you work in a field that recognizes how important early intervention is?”  So I told her, with my voice trembling out of frustration and anger, that my daughter had been without therapy for almost 5 months and is desperately in need of services.  The woman told me she’d leave a note for the OT.

Surprisingly the OT called the very next day and had an opening the following day.  Hallelujiah!  While I still do not like the front office woman, the OT seems fine.  She’s young, which worries me a tad in terms of her experience with Sensory Integration Therapy, but she also is very eager to work with me and wants what’s best for Lily and our family.  So we’ll see how it goes.  It is a big group and there are other OTs so if she doesn’t work out we’ll figure something else out.  I have not gotten the results back from Lily’s evaluation but am looking forward to what that computer spits out this week.  I just want regular therapy for Lily and a sensory diet we can follow at home to give her what she needs.

Some may think I’m overreacting and she’s just being a 3 year old.  But I know I’m not overreacting.  I’m acting on what I know to be her true struggles, the things I see every single day with her, things that if not addressed could become major hindrances to her development and her self esteem!  I’ve just read “The Out of Sync Child” which I recommend for any parent who has a sensory kid.  It explains, in laymans terms, what SPD is.  It goes through each sense…olefactory, visual, auditory, tactile, vestibular, proprioceptive, taste and gives examples of a neuro-typical child and an SPD child in everyday situations.  It has been helpful for me to see that I am doing the right thing by seeking proper therapies for Lily and that she can succeed in school and life as long as we find ways to help her in a positive way.

The hard parts are at home, when I’m already tired, and she’s having a “bad sensory day”.  Sometimes she wakes up and I just know instantly it’s going to be one of “those” days.  I don’t try to dress her anymore, she is VERY particular about her clothing.  Some days she spends the day in her snow white costume, some days its panties and a shirt, and others she’ll actually where a knit dress with pants.  I just don’t know what will be until she finds something she’s comfortable it.  If she likes something though I wash it at night so its there for her in the morning in case it’s a “winner” again! 

She likes to wear shoes, socks not so much, and the shoes she is very particular about.  She has these gold shoes, which look like little ballet slippers, no buckles or velcro, or shoelaces, and she will wear these all day long.  She even wants to wear them to nap in sometimes.  But then there might be a day where she wants to wear a different pair of shoes…but none of them feel right.  She’ll try on 5 different pairs and get so frustrated and angry she just bawls.  The same thing can happen when finding a shirt to wear.  If it doesn’t feel just right, she’ll rip it off immediately.  And do not under any circumstances get her sleeves, shirt, or pants wet at all…it has to come off immediately, she can’t handle it.

She loves to jump, she HAS to jump.  She has to climb and twirl and run.  She climbs through the pillows on the sofa.  Covers herself up with the pillows and digs her way out.  She needs that proprioceptive input, the heavy work of climbing and pushing and pulling helps “organize” her body.  Lily is non-stop.  She is in “go” mode at all times!  Sometimes though, when its a bad day, the only way she can get the proprioceptive input she needs is to clench all her muscles and then release.  She’ll clench, release, clench, release, clench, release…and if she does this during a meal time (which she usually does) it can be darn near impossible to get any food in her little body.  She’s so preoccupied with her body needing that input, that hunger takes a back seat.

Lily also has an incredibly keen sense of smell and hearing.  She can hear things that you and I don’t notice and her sense of smell is developing to a point where if she doesn’t like a smell you have to remove it.  Again, she’ll just fixate on that smell and can’t move on to the next thing until that smell is gone.  And from a hearing standpoint there are some things that bother her immensely, like a lawnmower or leaf blower, a public toilet flushing, the blender, if I know we are going to encounter these things I have to give her warning so she can cover her ears in advance or get out of the room all together.  She will always tell me when something is “too noisy for her ears.”

There are more things I could mention and again, some may think I’m overreacting, but when you add all these things up and you understand that her reactions to things she does not like go well beyond that of a neuro-typical child, SPD is real, it is very, very real.

The following is taken from www.sensory-processing-disorder.com where the writer was making a presentation to daycare and preschool teachers to help them understand the children with SPD in their classrooms. 

She said “Imagine if:

  • You could only sit here for 15 minutes and then you had to take a run around the building or do 20 jumping jacks so you could sit for another 10 minutes before your muscles felt like they were going to jump out of your skin.
  • People's whispers sounded like they were yelling.
  • The tag in the back of your shirt makes you feel as uncomfortable as you would if a spider was crawling on you and you couldn't get him off.
  • The different smells in this room made you utterly nauseous.
  • The humming of the lights sounded louder than my voice.
  • You couldn't focus your eyes on me because everything and everyone in the room catches your attention and your eyes just go there instead.
  • Your clothes felt like they were made of fiberglass
  • You see, our central nervous systems take in sensory information, our brain organizes it and causes us to act or react based on the information and our environment.  This affects our social interaction, our development, our self esteem, motor skills, focus and attention.  So when something doesn’t work quite right in that loop, if the brain can’t organize what it is receiving our learning, physical, and emotional development is affected.”  To read more about SPD visit this link.  I encourage people who have a child with any of the behaviors I mentioned above, to take a look at this website.  You don’t grow out of SPD and you can’t discipline an SPD child into “acting right.”  They can’t control their reactions, they literally can not control themselves, they need our help to understand, empathize, and find ways to work with them.

    I’ll write more about Lily and our OT adventures soon.  I’ve got an Avery post working too, but its late and I have to go to sleep :)


    Stefan said...

    There is more and more research that links many learning and developmental difficulties to poor communication and synchronisation between the two brain halves. An effective way of improving the processing functions in the brain is to listen to specially altered sound or music through headphones as pioneered by Dr. Alfred Tomatis (Tomatis method) and Dr. Guy Bérard (Auditory Integration Training - AIT).

    Now there is a new Sound Therapy Programme which has been specifically developed with the aim to improve sensory processing, interhemispheric integration and cognitive functioning and it is entirely free to download and use at home. It has helped many children and adults with a wide range of learning and developmental difficulties, ranging from dyslexia, dyspraxia and attention deficit/hyperactivity disorder to sensory processing disorders and autism. It is not a cure or medical intervention, but a structured training programme that can help alleviate some of the debilitating effects that these conditions can have on speech and physical ability, daily behaviour, emotional well-being and educational or work performance.

    Check out the Free Sound Therapy Home Programme from Sensory Activation Solutions. There is no catch, it's absolutely free and most importantly often effective. Find it at: http://www.uk.sascentre.com/uk_free.html.

    Anonymous said...

    Thank you I will look into that and ask our OT about it as well!

    Kimberly and the GA Guinn Triplets said...

    The Out of Sync child has a follow up called the Out of Sync Child has fun, which is also GREAT!!!

    All time favorite video of Zoe!

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