When Everyone Is Not On Board

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An early childhood educator told me this one very particularly frustrating day:

“There are going to be well meaning professionals in your son’s life that will help him move forward and others who will only hold him back if you let them.   My advice to you is to keep the ones who “get” Johnny close and lose the ones that don’t help him move forward at all.  Do not waste your energy on them and trust your gut.  You and your husband know your son the best.”

I really needed to hear this one particularly frustrating day when Johnny had his regular speech re-assessment.    Johnny  was in Junior Kindergarten and going between his public school in the morning and then to his afternoon private special needs school in the afternoon,  and the private school had brought in an educational consultant .  She was also a speech pathologist who after working with Johnny wanted to know if he had been diagnosed with motor speech delay or Childhood Apraxia of Speech.

“No he had not but I had been asking the paediatricians and the public health SLP about why his mouth was moving the way it was and the sounds he was producing.”

On top of this, Johnny’s special needs teacher was lobbying hard for an iPad for him for communication because he was completely non-verbal at that time.  The CBS 60 Minutes show was out about how iPads were revolutionizing the lives of Autistic children and we were ready to get on board.  As most parents in our position know they are expensive once you combine the device and necessary apps so you try and source and see where you can access one.  We needed a referral from his early child education SLP from public health to put in a referral request thought the government agency .  The special needs teacher from the private school had filled out all the right forms and worked with the Develpmental Paediatrician who gave Johnny’s his Autism diagnosis and they just needed the public health department’s preschool SLP to sign off on it.  She would not do it because she felt that he was not demonstrating the ability to cognitively handle an iPad and he should begin on a very simple device or a communication PEC book.  At this point he was already beginning to use  very simple apps on an iPad at his private school.

So I decided to confront the early child education public health SLP after Johnny’s routine 6 month re-check assessment about looking into AAC device and motor speech therapy.   The assessment took place in a room that Johnny has never been in before that was filled with tons of rubbermaid bins filled with toys and the walls were so thin the sounds of the other SLP’s chatting in the hallway were distracting for him.  He could hear the voices of other SLP’s and therapists in the hall and he would try and say their names and smile instead of answering his SLP’s questions.  I could tell she was frustrated and when I pointed out that all of this was too distracting I was told he needs to learn to handle all of this.  This is when in my head I’m thinking has she forgotten she has an Autistic little boy siting at the table who is trying so very hard to listen to her and do her tests but its hard?

By the end of the session I’m very frustrated and I decide to swallow my feelings and put a smile on my face but dive into a fierce advocacy mode.  I asked her if she had any sensory integration training and she was not expecting this question.  She admitted she did not and I said that she should consider how much of Johnny’s life is ruled by sensory needs and not just ASD.

I then asked her about Apraxia and she told me he was not making enough sounds to make such a conclusion.  I asked her if she had any specialization or training in Apraxia and she admitted she did not but she could get a colleague to see Johnny outside of the clinic because they do not assess that here.  Hmmm… I then told her that he has been assessed already and he needs motor speech therapy and just doing “I want” PEC strips is not enough anymore.  He needs motor speech therapy to get his mouth, tongue  and brain working together.

I asked her about the paperwork for the iPad and she insisted he wasn’t ready and it would only overwhelm him.  She wanted to get him a simple device but their is a big wait list for that.  She then wanted to create a PEC’s book for him to use at school but would need to see him for one more block of therapy.  It was in that moment I thought I’ve given her a chance to really “see” my son and help him and she is  not “getting” him.  I asked about a referral to a parent training / coaching program to get speech to start called MORE THAN WORDS from the Hanen Centre.  She was not expecting that.  It seems that I would have to give up the last block of speech therapy that is publicly funded to access this course and with him starting kindergarten in the Fall I should re-consider even though the program is very good.  I told her to do the referral for MORE THAN WORDS.

You can read here about how this one program jump started Johnny and our family into the world of speech and talking and how our lives have never been the same since.   I wish I had pushed my fears aside back then and didn’t let these well meaning professionals pressure me into putting Johnny’s into a box.

Now, 4-1/2 years later,  I need to celebrate that we have found an SLP privately and a method to assist Johnny to become a speaker.  He is engaged and working hard to communicate and enunciate better.  We have also continued to back up the gains made in speech therapy by making sure Johnny is able to access any speech therapy resources available from school and board level.  This has meant constant positive advocacy bordering on annoying with the idea that they would do the same if they were in our shoes.

I also wrote more about our speech journey here:

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