It is Official

B officially has Asperger syndrome.  We had his medical diagnosis last week.  I think it was the first time I left an appointment like this feeling hopeful for the future and really wanting to continue moving forward.

The organization that we chose to work with for his diagnosis is really outstanding.  They are a not for profit, local organization that is a leader in autism and other special needs services in our state.  Every time I have visited their facilities and met with their staff I have felt a sense of comfort and understanding.  Last week was no exception.

Our appointment began at 9:00 a.m.  In typical fashion, we were running behind, but we made it.  I was worried that B would have a difficult time attending to the tasks they had for him, but the psychologist said he did wonderful.

My husband (E), B and I were at the clinic for three and a half hours during which time one child psychologist interview E and I and one took B into another room where she evaluated him and performed IQ testing with him.

Not surprisingly, B scored quite high on the IQ testing.  However, his social and emotional abilities are scoring far below his age.  None of this was really new news to us, but it was just presented in a way that was so hopeful.

The psychologists laid before us, quite a few recommendations and explained to us how each of those will benefit him now and how it will help to shape him in the future.  It felt really good to think about the future in such a positive light, instead of thinking about all of the deficits right now.

One of the options they suggested was a day treatment program that is run at their facility.  B would attend the program two days per week, for three hours per day.  The program is designed that B would be in a classroom with peers that have similar needs and abilities.  Each room has 4-6 children and 4 teachers, so B would get a lot more individualized help than he is getting in his normal preschool setting.

In addition, B would have a development plan written specifically for him, similar to an IEP, that would spell out the goals they want him to meet and what they would do to meet them.  The program uses mulit-perspective approaches to intervention, so each child gets what works best for them.

The core of treatment done during this time would really focus on giving him skills in the areas of his social and emotional development.  Currently, his school readiness does this as well, but not at the level that is appropriate for him.  While he is making some progress, it is not enough to bring him closer to his peers. They are building their skills as well, and moving even further away from him in this aspect.

The program would also work pretty diligently to find strategies, that work in the classroom, to help B with his sensory needs.  As it stands, most of his day is spent just keeping him regulated and he is really missing a lot of the school day due to his high level of needs for his sensory system.

With kindergarten starting in 10 short months, we feel like this is going to be an amazing opportunity for B.  He is still at a stage where he really loves going to school and seeks out learning every where he goes.  He also does not realize, fully, that he is so different from his classmates.

We are hoping that with this day treatment program, along with his current schooling and some other private therapy options that we are pursuing, that B will be able to function next year in the classroom and put all those brains he has to work.  He is a smart little cookie and we don’t want him to lose that because his sensory system and social and emotional skills hold him back.

Hope.  Today, I have it.


Too Much Sense

We have too much sense in our house.  And I am not talking about common sense, although I like to believe we have a fair amount of that as well.  I am talking about the five seven senses that all seem to be so prevalent (or nonexistent depending on the day or the kid) in our home.  We live in a home chock full of SPD, or Sensory Processing Disorder.

This all started about 5 years ago.  My husband and I walked into our home with a wee little baby who would change our life as we knew it.  That first night home was so hard, and when I really sit back and think about things, was our first time learning to adapt our environment to help B overcome his difficulty processing his senses.

I had decided, during my pregnancy, that I would breastfeed B.  I had learned a few things in preparation of bringing B home about breastfeeding, including the cardinal rule that you could not offer the child a pacifier during those first weeks.  It seemed to be very important, so I didn’t buy any pacifiers, so I would not be tempted.  However, I was gifted a pack and that rule about not introducing the pacifier was thrown out the window the very first night at about 2:00 a.m.

B needed to suck.  He was borderline obsessed with sucking.  In fact, we were finally able to convince him, just a few days shy of his third birthday to get rid of his beloved nuk.  His obsession with sucking didn’t end with just putting a nuk in his mouth though.  It also had to be the right brand of nuk , be not too old and be the correct temperature.  He would carry around three or four of them at a time and swap them out, because he didn’t like when they got too warm.  He never attached himself to a blanket, stuffed animal or any other comfort object, just his nuk was good for him.

Along with learning early on that B needed to suck, we also learned that he needed touch in order to sleep at night.  I don’t know how many times we got him to sleep that first night only to lay him down in his bassinet and have him promptly wake up screaming.  At about 4:00 a.m. we finally laid B down between us and all drifted off to sleep snuggled up in the same bed.  We have now been bed sharing for 5 years.  B is finally in his own bed, but A is also a touchy kid, so now he sleeps right next to me at night.

Speaking of touching, oh the touching…  If I am at home, it is almost certain that some kid is touching me.   B has always been a snuggler.  He needs, several times throughout each day, for E or I to just sit down and hold him tight.  He will tell anyone who will listen how glorious my soft skin is and knows the perfect place in the crook of my neck where his head fits just right and his cheek can cuddle up to my soft skin.  A is a toucher, but not a snuggler.  He wants to have a hand on someone or to be held all. the. time.  Even on the rare occasion that he wants to play on his own, he will come up every couple of minutes to crash into my legs and hang out at my side for a few minutes.

Then there is the crashing.  My boys seem to need a lot of input to stimulate their proprioceptive sense.  It is a rare occasion that someone walks up to me and taps me on the hand to get my attention.  I have to be ready at all times to be barreled into.  Taking care of these kids requires you to be sure footed.  Wrestling, pillow fights, pillow nests, weighted blankets, heavy lifting, pushing, pulling, banging, stomping…  It seems there is never a dull, quiet moment for these two.

Another funny thing, I am learning about SPD is that we can be both under responsive and hyper responsive to the same sense.  For instance, both of the boys will go into meltdown mode if the TV chanel is changed to “snow” and is loud, but not five minutes later they will be talking in a voice only appropriate for the outdoors and crashing toys into each other.  It seemed so odd to me at first that they could be on both ends of the spectrum, but it seems to hold true and I am learning to adapt our environment to account for this.

I am getting better at reading the signs that my boys need more input.  I know now, that when A starts shaking his head back and forth like a crazy person, I need to take him outside to swing so he gets the vestibular input he needs.  When B starts barreling through the house, creating a path of destruction, I know it is time to get outside and pull a wagon full of dirt or push A in his stroller.  When A starts grinding his teeth, I try to find  a way to get him some oral input (although this is difficult, given his aversion to having things in his mouth).   When B starts showing signs of tactile defensiveness, I know I need to just take out the ugly, albeit comfortable,  sweatpants and let him go sockless.

I am finding (without the help of OT yet, the wait lists are ridiculous) that lessening the effects of SPD is so much about paying attention to cues and adapting your environment accordingly.  I am hoping, that once we start some OT, we will be able to test and incorporate even more things into our day that will help make my boys lives a little easier.

My life is forever changed by this, I am hoping I can help my boys to learn to cope and adapt so their lives will be forever changed, for the better, as well.