These are just some of the “Spelling Words of The Week” in Grade 2 that Johnny is learning how to spell and write down in old fashioned oral spelling tests. He usually gets them all right especially if the teacher says the word slowly and sounds the word out phonetically. The challenge is when he reads the word out orally himself. He does not say the last consonant. He knows it is there and will write it down then you say the word to him but he will only say the first sound or the first two sounds and look at me for help. I then say “is it lan or is it lanD” and then after hearing the choice he will try and and say “land” with the letter D strong at the end. It is like knowing that you have to choose the red door but for some reason your hand keeps reaching for the blue door.
Beginning at the last part of his Senior Kindergarten year and at the beginning of Grade 1, Johnny had two speech blocks of 10 therapy sessions at school. A SLP with a motor speech therapy background came to the school and worked with Johnny and helped him achieve specific sound targets. He can now say all vowel sounds and every consonant sound except k, g, ing, r, and th. But where we live the government only allocates this much speech therapy at school and then the file is closed for one year and is only re-opened if there is a new “need” for service. Johnny’s date for his file being re-opened was December 10th 2014. We tried to get the paperwork filled out and filed advocating for a re-opening of his speech therapy file in June of 2014 before his Grade 1 year ended but “the powers that be” wanted to wait until September to do this. In September, the school board’s Autism SLP filed the recommendation for specialized therapy and for the file to be opened early. In the meantime, Johnny was in motor speech therapy using the PROMPT method privately for 10 weeks during late Spring into the Summer. This therapist wanted us to not pursue more speech therapy and instead let Johnny consolidate his skills and concentrate on social communication training. I was to start taking a parent training course in social communication. I have to be honest I was very conflicted. I trust her input and guidance a lot and I know she feels that Johnny has a vulnerable motor speech system that is coping with increased language demands and fast-paced conversation of his peers. I have been writing about it here: https://sunflowercyn.wordpress.com/2014/10/05/its-simple-just-comment-and-wait/
Grade Two begins and every night I work on Johnny’s spelling and reading skills. I notice how hard he is trying but how he is struggling with the sequencing of blends and the last consonant of words. Then I remember this sentence from the report from the speech therapist from private therapy:
“These speech production difficulties should be taken into account when evaluating Johnny’s oral reading skills at school. Incorrect pronunciation of words when reading aloud may reflect speech production difficulties rather than or in addition to decoding errors.”
We get a call from the government agency that coordinates extra services for students in our district and she reads me the party line which is “Johnny’s file is closed and regulations state that it cannot be re-opened until December 10 2014.” But then I hear in the message the crack of a door opening. “I have gone over his file and speech reports and unless there are any new challenges or cause for concern we will not be able to start up service earlier. Please call me back to discuss.” That’s when a light bulb goes off in my head that I have to make the argument that he requires new services for academic reasons so he doesn’t fall behind. I quickly write up an email to Johnny’s school and address it to the Principal and to all of the staff and teachers working with Johnny including the school board’s Autism SLP asking them for their help and why. I wrote about it previously here: https://sunflowercyn.wordpress.com/2014/10/01/if-you-cant-talk-do-you-understand-if-you-dont-talk/
I have good news to share.
The Service Co-ordinator called me today and said that they are making a rare exception for Johnny and opening his file early. She said she reviewed his file, the latest Speech report from his last therapy block at the private motor speech therapy, the feedback I sent her from teachers and staff at school and consulted with other agency speech pathology staff at the agency. They decided that there is evidence that Johnny has new challenges that are are affecting his academic progress and based on this they are going to do a service intervention now and not wait until December 10th so close to Christmas holidays. This is when you picture me doing a happy dance on a sidewalk in a very busy city street.
What happens now is they contact one of the agencies that they contract motor speech therapy from and in approximately 2 weeks the SLP from that agency will contact me about coming into the school to do a formal speech and language assessment. The SLP will also want to consult with all the teachers and staff who are working with Johnny as well as to get information on how he sounds and listen to concerns. The government agency wanted to stress to me that this opening of a service file early is not normally done but in this case its needed.
I phoned Johnny’s Daddy and did another happy dance as I was leaving him a message and then I wrote a quick email to all the teachers and staff who work with Johnny and gave me feedback. I think its important to always thank staff and teachers who take that extra step and help my son because let’s be honest, I am always going to ask for more because I have to as his Mother. I also like to really be as honest as I can because if they know Johnny they are naturally invested in his positive outcomes. Why shouldn’t they know the history and what truly motivates him?
“I want to thank all of you for what you are doing for Johnny. ****** and I could never properly explain to you how it feels to have your child lose the ability to talk and to wonder when at age 4 if he will ever be able to talk. I was asked recently what happened with Johnny that started it all and I would have to say he was ready neurologically and the powerful need to talk about his feelings. HIs Grandfather who lived with us and raised him was slowly dying of cancer and he needed to process losing him. I bring this up because the same feelings he has for his Grandpa are inspiring him to try and make stories on his iPad using pictures of my Dad and trying to type sentences when he comes home from school.”
What have I learned from this experience? I need to remember to always trust my gut when it comes to my son’s needs. No one knows our son better then his Mommy and his Daddy. Kind hearted and good intentioned professionals will give advice but in the end they are not with him the same amount of time as us. We listen and bear witness during Johnny’s frustrating moments. In the end we need to remember when its time to push forward and when its time to follow Johnny’s lead. This time it required us to do both.