Archive for the ‘sensory integration’ Category

Updates Blog

February 2, 2010

I was reading through my blog last night, and realized that I had some updates to share with everyone.  So here  goes.

Genetics testing revealed no known genetic markers for Cade’s autism.  However, it was very comforting to find out that if I do decide to have another child one day, that I am at no higher risk to have another spectrum child than is the general population.

The biggest gain from the psychology courses I tortured myself with last semester were from my Exceptional Children class.  Now I had already gone through the processes of writing an Individualized Family Service Plan (IFSP) and I had just completed stage 1 of his Individualized Education Plan (IEP), but this class gave me further insight into the law, what equality for exceptional children means, and programs that have shown success in the schools.  Hopefully I never have to fully utilize this information, as I now have a wonderful IEP team.  Again, kudos to his chair for being on the ball with the year-round autism classroom (5 slots total, just to give perspective on how coveted this class is).  I visit with the new teacher next Monday on February 8th.

We have a great new toy!  My brother, who has long worked with autistic and special needs children, sent him a Bilibo:

Doesn’t seem like much but it’s a chair, a rocker,a stool, a bucket, an oversized hat to play peek-a-boo with, a cave for toys, it’s sensory and imaginative play in a simple design.  Cade likes to put it over his head and then chants “Where’s Tade?” (his way of saying Cade) then rips it off dramatically and screeches with laughter.  He also used it to get to my coke I had set on the counter out of his way! 

We’re continuing to see great progress on the magnesium and B6 supplements.  Cade’s speech therapist noticed his changes immediately.  She commented that he seems to be absorbing so much more.  At one point, he was looking around the room and taking everything in, and she said that it was as if he we really seeing the room for the first time.  Now that’s a big difference!  I then filled her in that he had started a new supplement and she got the details for her nephew with autism, as she was so impressed with the differences in Cade.

I have some peace on the direction of interventions we are taking.  Not going to add anything new in until behavior therapy starts.  He’s still adjusting to the magnesium and I want to document his gains to see what’s working.    After that, I’m thinking of trying another supplement that’s supposed to help with language, L-Carnosine. You can find the study here:

I still dream of Captola’s house, but I usually feel peaceful when I wake.


What is enough?

January 23, 2010

I’ve been struggling the past couple weeks with finding a good mix between too little or too much interventions for my son.  On one hand I understand doing everything in your power, but on the other hand, I just want my son to be happy.  I also understand that early interventions are best. But I think a  huge part of being a happy pre-schooler is just having free open time just to be who he’ll be and play.  I recently saw a television program following a family through the journey to find working interventions.  Honestly, as I watched this story unfold on television, the thing that stood out in my mind the most, was poor kid, he just seems so poked and prodded.  How can one tell which intervention is working when you’re doing a dozen or so at once?  It just felt so invasive to me.

On the other hand, those offering well-meaning advise often makes me feel inadequate as a parent.  No I’m not yet doing bio-med interventions.  I haven’t read all the best books yet. I can’t afford developmental therapy right now.  But I’m not sticking my head in the sand.  I just have my own philosphy of how to implement things.  In the past Eight months we’ve added in speech therapy, occupational therapy, full-time preschool, a father moving out of state, and a toy overhaul.  It may not seem like much but I like to observe my son and see how he does with each change and allow time to adjust.    I started with a very happy toddler, and I don’t want to change that because at age two-and-a-half he received the label of autism.

Everything  isn’t perfect, we go through phases where he stims more, or shows physical frustration with crashing or headbutting.  He still cries at occupational therapy. He has regressed to eating with his hands again.  Even though it’s not perfect, I’m really happy with the progress he has made, especially socially.   He has gone from avoiding other kids, to playing side-by-side to actively engaging them in play. He keeps adding words to his vocabulary, and has started putting two words together more often.  I’m not sure where we’ll go next, or how long it will take for me to observe if the intervention is working.  We’re still working out a good sensory diet, and this week I’ve stared therapeutic brushing at home, along with essential oil massages.

I’m struggling between recovery and acceptance.   The bad thing is that part of me believes in both.

Sensory Processing Disorder and Toys, Correlation or Causation?

January 14, 2010

Now, I’m obviously not a scientist, nor have I researched this completely.  Just tossing out an observation I’ve made recently.  Is it just me or does the prevelence of sensory issues seem correlated with all the added bells and whistles on toys?  I’ve shopped for good sensory toys, and I’m surprised at how often I find myself going back to good old-fashioned toys and staying away from today’s gadgets.

Today’s mainstream toys seem designed to ensnare the senses and not stimulate them.  They enrapture children rather than encourage imagination. Play seems less exploration and more entertaining.   This would be ok if play was just unwinding, but to a child, play is work.  The work of growing and learning.  While children grow so does their nervous systems.  With TV and video games and hi-tech toys are we stunting our children for normal sensory development?

Some great toy recommendations from me, the mother of Cade, autistic 3-year-old:

Rubber, bean filled reptile toys found in the discount toys section of target.

spinning tops, my son loves to watch these go round and round.

bucket o wooden blocks, found anywhere, most recently at big lots for 7 dollars by me.

Bowling games, I love the one we have above, different textures, sounds and of course, the fun of crashing the ball into the pins!

good old-fashioned play dough.

stuffed animals of different textures and types.

Just a few, if you would like more recommendations by me, I’d be happy to tell you some of our other favorite, sensory inducing toys!

Breastfeeding and Sensory Integration

October 16, 2009

Breast is best, and I was on board for breastfeeding long before my son was conceived.  I read every book I could get my hands on.  I could even tell you why algae DHA formulas are bad for babies.  About a day after birth my son started having issues with breastfeeding, one nurse saw that he was completely tongue tied.  I had to do battle with a pediatrician, but I eventually got a frenulectomy done on his tongue (we snipped the extra tissue).  He  did better for a little bit, then was almost failure to thrive again.  My body didn’t like pumping so that wasn’t an option.  I saw a few different lactation consultants, and finally the last one said it was me and had me put on anti-depressant for postpartum.  Let’s face it, I had an incredibly hard time nursing my son.   But it wasn’t  me, my milk supply wasn’t low, I wasn’t depressed, I had a sensory challenged baby, and I feel let down that no one picked up on it.

Maybe I’m too critical, or too optimistic, but I cannot help but wonder if any of these medical professionals  in my life helping with my breastfeeding issues had picked up on his sensory issues  if his development may have differed.  I think  we could have had a sensory diet in place for him since then.  I made it  seven months by the way, just out of sheer stubbornness.  It was grueling having a child who wanted to constantly be on the breast and who bit!  I wasn’t depressed, I was exhausted and could barely leave the house!

I don’t have much else to say on the topic, other than I’ve sort of began a small grass-roots operation to start raising sensory awareness in lactation professionals.  Breastfeeding is a complete sensory experience for an infant, and I can’t help but think that recognizing sensory issues will not only lead to a sensory diet as I mentioned above, but also more mothers succeeding with breastfeeding.  I’ll leave you all with a link I wish I had seen when I was nursing!

Putting the Puzzle Together

October 12, 2009

cadepicassoI love the symbol of a puzzle for autism.  Not that I think my son has pieces missing, it’s just that I don’t yet have the full picture and things are being revealed to me the more my son and I learn.  Then I take the knowledge and work with him so we can see through behaviors as to who my son is as a person. I’m feeling like the puzzle of my son is going from a Picasso to a portrait I can understand.  Both beautiful works of art, but one is more tangible for me.

Diagnosis of pdd-nos, this is what the Yale School of Medicine has to say:

“Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS) is a ‘subthreshold’ condition in which some – but not all – features of autism or another explicitly identified Pervasive Developmental Disorder are identified. PDD-NOS is often incorrectly referred to as simply “PDD.” The term PDD refers to the class of conditions to which autism belongs. PDD is NOT itself a diagnosis, while PDD-NOS IS a diagnosis. The term Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS; also referred to as “atypical personality development,” “atypical PDD,” or “atypical autism”) is included in DSM-IV to encompass cases where there is marked impairment of social interaction, communication, and/or stereotyped behavior patterns or interest, but when full features for autism or another explicitly defined PDD are not met.
It should be emphasized that this ”subthreshold” category is thus defined implicitly, that is, no specific guidelines for diagnosis are provided. While deficits in peer relations and unusual sensitivities are typically noted, social skills are less impaired than in classical autism. The lack of definition(s) for this relatively heterogeneous group of children presents problems for research on this condition. The limited available evidence suggest that children with PDD-NOS probably come to professional attention rather later than is the case with autistic children, and that intellectual deficits are less common.”

When Cade was diagnosed I found it extremely confusing and difficult trying to navigate the spectrum.  Knowledge is power and I was powerless.  PDD-NOS as one can see, being a catchall diagnosis is an enigma in itself.  But in our case, they also said autism.  I was seeking answers in medical guidelines that were a huge umbrella encompassing so many things that it didn’t give any peace of mind or direction for my son.  So I pressed for further evaluations.  I had already had speech, so I requested occupational and genetic (still waiting on the results from the genetics testing, UNC is not an easy place to get into).

Occupational therapy has been a real eye-opener.  I finally have some answers.  I know some of his autistic behaviors and why he does them.  Things like stimming, smearing, being afraid of stickers, jumping all the time, having a high tolerance for pain, and more.  Finally I had tangible goals with practical solutions. I dove in.  He was diagnosed with sensory processing disorder for tactile, vestibular and proprioceptive.  Big words, essentially tactile is  sense of touch.  Vestibular is inner ear;for my son mostly auditory sequencing, but it can relate to sense of balance and spatial awareness as well.  Proprioceptive is how the body relates to itself, and the occupational therapist also said he has low muscle tone.

I also had a fantastic case manager when my son was in the CDSA (North Carolina’s program for exceptional children under 3) who was a nurse.  She was great about answering my questions and providing practical advice and explaining the medical side of it.  She was simply amazing, and I wish I could keep her on speed dial now that I’m on my own coordinating his care and therapy.

I’m diving in by taking three college courses this semester, Exceptional Children, the Psychology of Learning and Development and Developmental Psychology.  It helps to satisfy my need to become expert in whatever I am encountering in my life, and in the case of my son, there is no greater priority.  It’s nice to have the scientific nature of issues and know sort of what is going on with his brain.  But I also find that my real-life connections have been even more helpful in understanding this puzzle. People like Rachael, from Asperger Journeys, have made autism tangible rather than abstract for me to understand.  My son’s speech therapist is another peach, in explaining things tangibly for me with regards to therapeutic listening and auditory sequencing memory disorder. 

cadepuzzleI’m no where near understanding all the pieces I have to work with, but as we fill the corners; more pieces will fall into place.  We will continue working on known issues like speech and sensory, and hopefully like happened with speech, once we got him to break out a bit and talk we could see where the piece for auditory sequencing went.  Had we never encouraged him to talk, we never would have known that he transposes words and phrases.  One day at a time, one more piece at a time, before long I will better understand my son, and that is a journey I am fully on board for!