My stress level is high right now, due to issues with my job.  If it was a simple as getting a new job, I would have done it in a heartbeat.  There isn’t anything I wouldn’t do to keep him on the track he was on until a few weeks ago.  However, a week job market, the fact that until hubby graduates I am our only source of income, and the fact the my hours are flexible enough to allow me to be home with the kids after school, all keep me where I am.  As a result of the increased stress levels, I’ve been seeing C’s anxiety levels go up and up and up.  The results are that he triggers more frequently, more easily and getting him to calm down takes longer and longer each time.  This of course increases the stress level of everyone in our home, and those who are working with him/interacting with him.

I don’t know how much longer this will go on, nor how to fix things.  If I could just wave my magic wand  and fix it all, I would.

I feel like I am watching everything we’ve accomplished, everything we’ve helped him strive towards and acheive slowly unravel.  It’s not easy, the position I’m in.  I can’t up and quit a job, our only source of income, but I also cannot allow this to progress.  I’m just not sure what to do here.  I can see the what and the why, I can see the how and the consequences, and I’m at a loss. 

Things are hectic at home, and not in good way.  I’m just at a loss at what to do to……………

 Relevant History:

“In further discussion with C’s teacher, J, she indicated that he plays contentedly but primarily on his own.  She indicated that he ususally holds a small car or two in his hands and carries them with him as he transitions from activity to activity.  When frustrated, he typically flops down on the floor.  Head banging has been observed at the childcare but has not been observed recently.  Parent reported that head banging persists at home, but is markedly reduced in frequency.  C generally sits for circle activities.  He also typically transistions well between activites.  Referral identified high activity level.”

“Language milestone were significantly delayed.  First words reported at 26 months of age and word combinations are reportedly just emerging.”

NONVERBAL COMMUNICATION SKILLS:

Shows interest in faces and objects

reaches for toys/items of interest

uses gestures/eye gase/body language to interact*limited eye gaze

EXPRESSIVE LANGUAGE SKILLS:

shows communicative intent

DOES NOT use words at an age appropriate level

DOES NOT use grammar at an age appropriate level

DOES NOT express ideas at an age appropriate level

RECEPTIVE LANGUAGE SKILLS:

shows age appropriate understanding of concepts and vocabulary

understand directions at an age appropriate level

answers questions at an age appropriate level

ARTICULATION/PHONOLOGY:

uses sounds at an age appropriate level

speaks clearly(can be understood) for age

PRAGMATIC LANGUAGE SKILLS:

takes turns in play

takes turns in conversation

DOES NOT communicate for many different reasons

DOES NOT demonstrate age appropriate social skills/play with others

FLUENCY SKILLS:

rhythm/rate/prosody of speech judged to be within normal limits

VOICE PRODUCTION:

voice pitch(how high/low the voice sounds) judged within normal limits

nasality(appropriate amount of air through the nose) judge withing normal limits

voice quality (not hoarse or breathy) judged to be within normal limits.

 SUMMARY

Informally assessed, receptive language skills were judged to be developing appropriately.  Specifically, C responded consistently to Yes/No and simple WH questions, and responded appropriately to comments and one step directions.

Expressively, C verbalized readily in a one to one interaction with the clinician of the classroom.  While sharing a book, he readily labeled animals, provided appropriate animals sounds.  In play with potatoe head toys, he used single words, less frequent two word phrases and chains of single words and short phrases.  For example, to request daddy’s nose, he said “Right there - missing-daddy nose”.  To request glasses, he said “Glasses - here-here-on” while pointing to the potato head.  While expressive language skills are judged to be mildly delayed for a child aged 2:8, it is important to mot that his expressive skills are considerably better developed than classroom observation would suggest.  Childcare staff reported that C uses only a few words in the classroom and only occasionally.  As was reported by his preschool teacher, C played contentedly on his own in the classroom moving from one activity to the next holding a toy car in his hand.  He settled for a lengthy time with the clinician at the craft table.  In this situation, he commented appropriately (e.g.”Hey,” “Oh oh”), used appropriate social language (e.g.”Hi,” “Thank you”) labeled (e.g “mouth) and responded appropriately to Yes/No and Wh-questions (e.g. What happened?  Fall Down).  It was observed , however that he did not readily request.  For example, he persisted for a lengthy period of time trying to remove the cap from a marker before handing it silently to the techer.  The teacher reported that he will frequently walk away rather than request assistance.

In case conference with parents and teacher following assessment, it was suggested that pragmatic language delays are suspected, referring to difficulties with the social use of language.  Specific concerns were noted with limited requesting.  Concerns were also noted that when he did request he often used words and frequently combined the words with a gesture such as handing the object to be acted upon or pointing at the object to be acted upon, but did not typically combine his requests with eye gaze.  For example, in play with bubbles he appropriately verbalized “Bubbles,” “again,’gain’gain” and “Open” and combined these requests with gestures such as placing the bubble bottle in the clinicians hand, or sliding the bubbles toward the clinician.  He did not, however, combine his attempts with eye gaze but rather kept his gaze fixed on the desired object.

Parents consented at the case conference to a referral for an Occupational Therapy assessment through SPOT in response to concerns regarding limited social interaction and possible sensory based concerns including head banging.  Parents also consented to a referral to KE Habilitiation Services.  This agency will proved a developmental screening and if needs indicate, provide a Resource Teacher suuport for C in the childcare setting.  Childcare agreed to initiate these referrals through SNAP.

Suggestions were provided to parents and childcare staff at the case conference.  These suggestions focus primarily on encouraging social interaction with peers, and ecouraging requesting.

We’ll start with the staff at the daycare - since they were the most instrumental in identifing a problem.  There is Jenn and Missy, who were with him the the Nursery School room.  They were the most observant, and kind.  Then there is Lisa, in the preschool room, who was firm but kind while we were going through the process of getting him assessed and getting us through some of our worst moments.  Then there is Missy (again) and Stacey in the Sr Preschool Room who worked with us as well during the diagnosis process.  It was their calm and understanding manner that helped him discover how to settle himself down.  We saw huge amounts of improvement and growth in that room, as well as our share of setbacks.  And now, in the Kindergarten room we have Marion and Michelle, who are helping keep what progress we’ve made stay on track and helping him sort through the chaos of going to school two days a week some weeks and three days a week others and daycare on the days he isn’t in school.

At KidsAbilty we have Cara, who worked through speech issues until we no longer qualified for help.  And Katie, our occupational therapist who comes in and lends a hand when we are at our wits end with his sensory issues.  And Sandy who worked with group sessions for speech issues, and Susan who got the ball rolling, without her we would not be where we are today.

At KW Hability there are Jane and Karen.  Karen was our first resource worker, and worked with our son developing and assessing the progress in his social skills developement.  She also helped us prepare for the assessment which landed us an actual diagnosis .And Jane who is his current resource worker who has an incredible gift of patience and understanding while she works with our son to expand all that we’ve acheived to date.

At school, we have his teacher Marg O and his EA’s Mrs. C and Mrs. L, who we know are kept busy helping him navigate the daily school routines.  Without them I think the teacher and the class would not be as smooth functioning.  We also have Johanna the special education teacher whose expertise in working with Children on the sprectrum is incredibly valuable.  We also love her for the help she gives our daughter!!!

 We also have our families and all the support they give us, whether it is dropping everything to come to our aide or just picking up the phone to ask how our day is going. 

With all this help, we’ve seen our son blossom.  We know right now at this moment he is properly supported, and so long as we can continue at this level of support we know that he will grow up and overcome the many challenges facing him.

The words “Thank You” seem so inadequate for the things all these people have given us.  How do you tell someone that they have not only helped you get the support you need, but that they have given you your son, something that in the beginning seemed so out of reach.  They have given us our family back - we function as a family - not your typical family mind you - but as a family.  I know that the time we have left with many of these people is coming to a close, as we move on in September to Grade 1 and we no longer qualify for the Preschool Outreach Program as a resource.  I can only hope that the next steps are as fruitful as our first steps have been.

My son, when you meet him is a happy boy.  He’s excited to meet you - if you are an adult.  When we attend an event as a family there are hours - even weeks - of preparation that goes into our visit.  Explainations, social stories, discussions, all take place well before the event.  The well mannered child you see is the result.  He is prepared for what we are doing.  Preparation is key for him.  If he is comfortable with what is happening, and can anticipate what to expect, he can adjust and adapt accordingly.

When we are out somewhere and he melts down, it is usually because we have deviated from the previously discussed plan.  This cannot always be helped, there are times when we simply cannot control everything.  We can usually tell if and when a meltdown is going to occur - there are triggers.  Too much noise, too many children, too little space all these things are triggers.  A busy mall at Christmas is a nightmare.  The volume of noise is too high even though you don’t notice it.  The lack of space is next to intolerable for him.  Someone touching him will set him into a meltdown almost instantly.   The stares we get when he melts down are downright rude.  People have even gone so far as to offer suggestions on how to prevent this behaviour.

Take our annual camping trip for example.  August long weekend every year we get together with friends and family to camp.  It is a wonderful weekend.  There are many ways to prepare for this.  We talk about camping, gently reminding him of our trip the previous year.  We pull out the scrap book and go over the pictures taken from the previous year.  We’ll pull out the tent, and put it up the week before.  We talk about sleeping in the tent, sleeping in a sleeping bag.  We talk about the toys we are going to bring.  We talk and talk and talk.  Loading up the van we talk about the things we are taking and why.  We show him the online picture of the campground, and discuss the things we will be doing and how much fun we will have.  When we arrive at the campground we have him help us unload and set up (where appropriate of course!!)  If we have rain, or a thunderstorm, he gets anxious.  This is not something we can necessarily predict, though we do check the weather forcast.  If we tell him we will go swimming but then something happens he will get upset, or have a meltdown.  We are getting better at redirecting him before things get too out of control.

We help him establish his “safe” or quiet place.  He is never left alone.  Since he is familiar with most of the children of our friends, and has been around and played with them before, he is usually a little shy at first but warms up quickly.  Most of the children are also a bit older than he is.  He does not usually get along well with the children around his age or younger so he is frequently not with them.  We usually have family with us, so there is always an extra set of hands and eyes to help. Our family for the most part understands what his issues and triggers are and tend to be very helpful.  I don’t get a great deal of time to spend with friends - unlike my husband who is rarely at our site - but it’s nice just to be away from the daily grind!

Our friends and family see a boy who has fun, plays and enjoys himself - they don’t see that it has taken at least 2 weeks of work to get him ready for this.  I frequently get asked to come and spend and evening out with the girls and while I’d love to do this - I simply cannot drop the routine without preparing him first.  I do try to get out once a month however just to get away.  I’ve been told to get a sitter on more than one occassion and just come out - but there again it comes down to someone who just doesn’t understand our situation.

We will never be truly live in a world where everyone understand Autism and how that affects our family - but hopefully we will not meet too many people who are rude or ignorant like the ones we’ve already encountered.

 The most common question I get once someone has found out that my son has an Autism Spectrum Disorder is when did I figure out that he had this.  There really are two answers to this question.  We suspected that he had this around age 3.  The signs and symptoms were all there.  The second answer would be May 27, 2009.  That is the day we got the diagnosis on paper from the child psychologist.

 I sit and think about it some times, and wonder if maybe I began to suspect this much sooner, but can’t think of what single thing might have tipped me off sooner.  He met all or most of his first year milestones either on time or within a reasonable period of time.  He was a fussy baby, colicky would best describe it.  He was always very attached to me, and was always more emotional, but honestly at that point I just thought he was a little high strung.

By the age of two, he wasn’t talking like my oldest daughter did, but she was far ahead of most children her age, so really, she wouldn’t have been the best example for comparison.  I found that my daughter seemed to do most of the talking for him.  She seemed to understand the language he was using, and spoke for him.  This too did not seem odd as this is how my mother in law described my husband at this same age.  The delay in speaking is not totally uncommon in boys and given that we knew my husband was delayed in his speech, we opted to keep an eye on it but did not agressively seek help on this issue.

It was about the age of 2 that I attempted to return to work full time.  I had been staying home with the children until that point.  We put him into daycare.  We placed him in the same centre my daughter had attended, so we were very comfortable with the staff there.  The staff noted he seemed to be a quiet, more observant child.  No one was overly concerned at this point.  Full time work didn’t work out, so we moved him from full time care to the nursery school program.  He attended this program until he was just a bit older than 3.  It was in this program that we started down the path towards a diagnosis.

The staff noticed that my son seemed to be very solitary, and seemed to spend most of his time in his own world.  He would attend that class for 2 1/2 hours twice a week, and in those 2 1/2 hrs he did not speak.  He seemed to have trouble transitioning from one activity to the other.  Temper tantrum were frequent, both at home and at daycare.  The first step was a referal to the SNAP program through a local agency, KidsAbility.  The initial reason for the referral was a suspected speech delay.  I will post more about the original assessment in another entry in my blog.  Please find some important links that you might find handy……………..

Signs and Symptoms of Autism Spectrum Disorder

http://www.cdc.gov/ncbddd/autism/signs.html

http://www.mayoclinic.com/health/autism/DS00348/DSECTION=symptoms

KidsAbility

http://www.kidsability.ca

Many people have asked me if I have written about my experience so far with my son’s diagnosis.  There are many things I could write.  I could write about how we got to his diagnosis, the trial and tribulations we’ve been through, what we are going through now and what we anticipate we will go through.  I could write about how we are dealing with the emotions of all the we face.  I think I will write about everything - feelings, trials, tribulations, how we got here, what we are doing now, what we are hoping to do.  It’s my perspective, it’s my emotion and what I do, feel, and learn are my experience alone.  I don’t expect that anyone will feel the same as me even though their child share the diagnosis.  I’ve figured out that our family’s experience is unique to our family.  That doesn’t mean of course that someone out in cyberspace won’t connect with us, it just means that I don’t expect every person to connect!

I’m no expert on Autism Spectrum Disorders.  I’ve learned more in three years than I ever thought possible about Autism Spectrum Disorders.  I’d call what I’ve learned experience, not expertise.  

I chose the title, Walking Between Two Worlds because most days, that is how I feel.  I feel as though I’m walking between the world as society knows and expects it, and the world as my son and family experience it.  The world my son walks in is far different than the one I walk in.  I get glimpses of his world occasionally, like someone peering through a window.  The problem with getting only a glimpse is you don’t always understand what it is you are seeing.  So many times I’ve peered through, and seen a world that to the surface is realtively simply.  Everyday things are black and white, there is no grey area.  It seems so calm and peaceful, but then there are times when all I see is frustration, and hurt and maybe even a bit of fear. 

As a mom, I have to walk in both worlds.  I have a 40 hr a week job, which is necessary to our survival.  I have to deal with the demands of the everyday ordinary person at work.  When I get home, I have a daughter, a son and a husband who all need some piece of me for something or other.  My son’s needs are much much different than my daughter’s.  It’s with my son that I step over that threshold, from my world to his.  I’m constantly trying to learn more about how he sees the world, and what I’ve learned so far is astounding.  I’m not even sure I could put it into words and do it justice.

So as I blog about our journey, whether it be a journey in the past, present, or a plan for our future, you will hopefully be able to share my walk between two worlds. 

I finally get him inside, and his first response is “yuck, stinky”  He gets a look at the “toilet” and bolts towards the door.  Attempt number 1, complete failure.  Well, maybe not complete, he did “pee on a tree” rather than wet his pants.

 Attempt # 2, LEAVING 6 YR OLD AT CAMPSITE!!!!!!  Get him in the door, get PAST the smell, and guess what, he’s not tall enough to get it all in the hole.  Clean up the mess we leave when complete, result - almost a success!!!

 Attempt #3, LEAVING 6 YR OLD AT CAMPSITE, and BRINGING STEPSTOOL!!!  Get him in the door, get passed the smell, STAND on the stepstool, and we have success!!, oh but wait, the other side of the outhouse is being used and now instead of being repulsed by the idea, we want to know why we can hear the other person peeing.  How do you explain this??  Ok, explain, one hole, is large enought to make 2 bathrooms.  He accepts this, off we go!

 Attempt #4 - IT’S NIGHT, LEFT 6 YR OLD AT CAMPSITE, BRING STEPSTOOL BRING SMALL FLASHLIGHT one for him, one for me.  LOSE small flashlight down the “hole”.  The world is ending!!!!!  He wants me to go get it.  I DON’T THINK SO!!!!  Ok, calm down, go pee, and promise that the next day we will get a NEW flashlight! 

 So, he manages to accept that an outhouse is ok, but peeing on a tree is better!!!  I took him to the flush toilets by the pool where he had a bowel movement (YAY!!!) and we survive the weekend. 

We get home, and he is outside playing with a friend.  I go into the house, I come back out 20 seconds later, and he is peeing on a tree!  Ahhhh, now we have to start again

 Attempt #1 - bring child inside, show him toilet, show him toilet paper, and retrain.  No peeing on a tree at home!!

Yesterday he must have needed attention or something, because today was almost a 100% turn around!  goodness, what a difference 24 hrs makes.