JC's Extra-Special Needs

The term "special needs child" is used to describe children with SPD or other disorders or disabilities.  It seems to me that "Extra Needs" would be a more suitable description of JC.  So, I use both - he is an "Extra-Special Needs Child".  His SPD is complicated, as is usually the case.  He is sensitive to some things but craves input from other things.  He has good weeks and bad weeks.  Certain situations are more difficult than others.  Figuring out his triggers and tolerance levels is like solving a puzzle.  Below are the pieces we have started putting together:

JC has a severe oral aversion to most things.  Part of the “treatment” or “therapy” for this is to try to introduce vibrating teethers, chew sticks etc to de-sensitize his mouth and lips.  For the most part he refuses to allow anything in his mouth (unless he puts it there as mentioned above).  He started therapy at 16 months – his is now 27 months and is JUST NOW allowing the use of a toothbrush.  So it’s a slow process.

He started therapy with a vestibular defensiveness (sense of movement) and wouldn’t swing for more than 1 or 2 “swings” before he was climbing to escape.  Repetitive use of a swing with enclosed sides during therapy sessions helped him to transition into a comfort level of swinging while firmly buckled in and holding on for dear life, to overcoming this sensitivity altogether and he now LOVES to swing. 

JC also has a severe tactile defensiveness.  He will avoid certain textures at all costs – mainly the wet, squishy, gooey textures – like baby food.  For him, asking him to touch something slimy or wet like a noodle is like asking me to stick my hand in a bucket of worms.  The thought of it makes my skin crawl!  The therapy for this is a continual introduction of various textures for play.  Rice bins filled with small objects to search for, sand tables, jello molds with fun toys at the bottom which he had to dig for, shaving cream on a mirror or in the bath tub.  In the beginning, he refused to touch the shaving cream, jello etc.  But through gradual demonstration and encouragement (and seeing his big brother play in it), he will willingly enjoy “messy play” now. 

One of the most remarkable observations that I made during several of these tactile play sessions was that he would drool like mad while playing with these textures.  To me that was an “aha” moment because it brought to light the connection between tactile touch and oral stimulation.  Now I understood why he would gag at the slightest touch of something  or a certain food like noodles or peaches.

Because of this connection to oral defensiveness, an extension of the “messy play” tactile therapy is used related to food.  At each therapy session we will end in the kitchen for “snack time”.  JC will enjoy his snack of choice (pretzels, crackers etc) and the therapist will introduce a texture that he may be defensive too – apple sauce for example.  But we make it fun!  The applesauce becomes a mud pit for Squinkee Cars and we drive them through until they need a bath in the tub of water.  His desire to have fun has gradually overshadowed  his desire to not touch the applesauce.  Mission accomplished J   But, the diced peaches are the one nemesis that we have been unable to conquer.  If he is seated at a table and I put diced peaches on in front of him, he immediately tries to climb out of the chair and away from the “dangerous” peaches.  During one therapy session, he was finally touching them (we were using the peaches as “boulders” for the squinkees to crash into) – major breakthrough!  But then the therapist ate one, as if to show him that it was ok to touch it with our mouths too.  He gagged, pushed the plate away and climbed out of the seat.  It’s the same reaction that I would have had to someone eating a bug.  It is amazing how powerful this definsiveness is in his little mind!

Along with the oral aversion and refusal to eat for an extended period of time comes a failure to develop those oral muscles.  Infants learn to coordinate the muscles in the mouth to process food through the lips, around the tongue (then using the teeth once they have them), and down the throat.  Those processes and muscle strengthening “excersizes” prepare them with the motor skills needed for speech.  JC never developed those motor movements appropriately which explains why he would gag at almost EVERY meal, and why he still uses a bottle and refused a sippy cup (although the texture of the sippy cup plays a role as well).  This aversion and lack of proper development has also led to a significant speech delay and oral motor skills problem.

We started speech therapy after his 2^nd birthday, mainly because he wasn’t using verbal communication to voice his needs.  Babies cry to tell us they are wet, hungry etc.  Toddlers learn to use verbal communication to meet their needs:  “me eat”, “help me” etc.  But JC wasn’t doing those things.  If he needed help, he would sit and scream until I came over to see what was wrong.  If he wanted something he would make a fuss until I played cherades to determine what it was he wanted.  Since we started speech therapy, he has come so far!  He now says or attempts to say single words and the occasional word pair (“all done cracker” – sounds like “a du cakr”).  He is making great progress and is attempting to use words regularly.  He mimics and tries to repeat what is said to him.  But he struggles with making certain sounds and is visibly groping for the right muscle coordination to make those sounds.  He also almost always says only the first syllable of a word or “fills in the blanks” with the same syllable – banana is “manamana” for example (which is a normal process of speech development, he is just reaching it much later than normal which is likely not related to oral motor skills as much as some sort of auditory processing skill).

Another common element of SPD which JC struggles with is sensory overload.  If you or I are in a crowded room, a concert or an amusement park, it may be difficult for us to focus on certain things, but we can usually selectively focus for a period of time on what we need to direct our attention.  For example, if someone is speaking to you, you can drown out the other noises and focus on that person’s voice even though it is difficult to hear.  JC struggles with this focus and discriminating external stimuli.  A trip to Walmart is like a trip to an amusement park.  So many things to see, hear, smell and touch.  Keeping him restrained for longer than 10 minutes is a challenge to say the least.  I usually try to combat this with a snack, music or learning game (Vinci Genius is a tablet designed for toddlers which age appropriate learning curriculum).  I have recently started using headphones and it makes a huge difference.  The headphones accomplish the task eliminating the background noise and extra stimuli, allowing him to focus and reducing the sensory overload.  Even in everyday situations, sensory overload can be common.  Bright colors, sounds, bright lights, scratchy clothing, even rain on the windshield can lead to sensory overload.  Many times I can be proactive and play music or begin applying firm pressure touch, but there are times when nothing helps.  Meltdown!  I read an article from an adult with SPD who described his feelings during a sensory meltdown.  He described a feeling of needles in his eyes from the light, stinging all over his body from any sort of touch, stomach pain, headache and much more.  I read that article and cried because I finally understood (as best as I could) what JC felt when he entered into a meltdown and I finally knew how I could help.  When possible, I try to remove any stimuli and calm the environment as much as possible.  He still has to work through it and emerge on the other side, but at least I can make it a little easier for him. 

Sensory overload doesn’t always lead to meltdown in the form of a tantrum.  Recently it has led to what I call “checkout” mode.  If we are in a stimulating environment he is engaged for about 15 minutes, goes full force for about 10 minutes and starts to try to “escape” by running around or away.  He still seems to be having fun but I have learned that this is a sign of an inevitable crash into “checkout” mode which culminates in him collapsing in my lap with his head buried in my neck or chest, eyes closed, refusing to move . This last for a few minutes while I try to pry him off of me or just give in and let him strangle me with his hold.  I try to give firm massage, joint compressions etc.  Sometimes it helps.  Other times, it just takes a while for him to sort of “snap out of it”.   I won’t lie – this behavior concerns me.   And its happening more frequently, which concerns me even more. 

JC also has a hypersensitivity to sound. In some children, this means severe reactions to sirens etc.  For JC it means a distraction by the smallest sound like a clock ticking.  It also means he gets overstimulated easily in noisy environments – again, using the headphones really helps.

In general, JC is easily agitated, has a very low tolerance for frustration, demands structure and is upset when things do not go as he expects them to.  Even with all of that – and perhaps because of it - he is the most expressive, loving, funny little 2 year old I have ever seen.  He is full of personality and independence.  He loves to snuggle and melts my heart with his hugs.  Life is challenging for him.  Being his caregiver, interpreter, 24/7 therapist is challenging for me.  But he is his very own version of perfection, and I wouldn’t trade it for the world!