Can you believe this, my teen son got diagnoses of autism, dyspraxia, sensory integration difficulties, and ADHD in his final year of school! Pierrette and I thank Tracy Palmer for her guest post telling us her story and for sharing her beautiful poem. Dyspraxia is a learning difficulty affecting some skills and abilities, including balance and coordination.
Guest Post: Diagnoses of Autism, Dyspraxia, Sensory Issues, and ADHD in Final Year of School by Tracey Palmer
I would be deeply honored and humbled, if you wish to use my poem, if it helps just ONE family, then that would mean so much to me. How to begin to tell you about this incredible and emotional journey of ours. I have shown my poem to my work colleagues, and they try to understand, they were moved by my words……but the people it touched more than any others, were of course, families who have taken similar journeys “touched by Autism”. Those who live it 24/7. I will share it with you after you hear our story.
I have ‘worn my heart on my sleeve’ since the diagnosis. I have spoken up for Autism and I feel a veil has lifted and I FEEL a much more tolerant Human being, and take each day as a precious gift. I have read many books, been to seminars, attended many groups, and just listened to other families. A small group WILL change the world.
How Books Helped
One of the first books I read was by Brenda Boyd, Parenting a Child with Asperger Syndrome: 200 Tips and Strategies. A truly remarkable book, one I now feel was the beginning, and exactly what the doctor ordered! On page 151, she writes of a planet Asperger,” where humanity had evolved quite differently and some of the scourges of our world which result from human cruelty and deceit are completely unknown. People highly value individuality, space, privacy and freedom from coercion. The phenomenon of group behaviour, such as the tendency to organize into social groups and follow a leader is virtually absent. This has far -reaching implications, War, for example is completely unknown.”
She sums up: “But perhaps the most special feature of all on Planet Asperger is the great respect given to children and their values. All its inhabitants grow up to adulthood without losing some of the more beautiful qualities of childhood-the sense of wonder, uncensored honesty and ability to see moral issues with uncompromising clarity”
And yet now, I read books that tend more to give help without the emotional depth, if you can see what I mean? I think I have grown, and although I still feel emotional, I want to learn and give back, help others, that is why I want to attend courses. My latest precious find… Martian in the Playground: Understanding the Schoolchild with Asperger’s Syndrome by Clare Sainsbury…truly magnificient!
How Friends Helped
Stages, I was warned we would probably go through stages by a fabulous person, who I now call a good friend. Sara Heath, who set up a self-help group called Autonomy, is an inspiration and a true advocate. She also works for the local council. She has been a rock, and always knows how to help me with Cliff. She gives talks and assistance to local schools, teachers, parents groups, represents ‘our people’ at tribunals and loads of other things. She taught me the term ‘our people’. She attended the Cardiff autism convention where she met Dr. Temple Grandin and managed to get Temple to autograph her book Thinking in Pictures for me!
How Our Journey Began
I think perhaps I started later in our journey, and perhaps I should try to go a bit further back.
From about three years of age, I noticed Cliff was a little different from the other kids:
- He didn’t like playing with kids in the nursery.
- He hadn’t much speech; we were told that he may need speech therapy.
- He could not hold a pencil and his writing was a mess.
- He didn’t like some sounds and other things I picked up on.
- He always sat in the same place in the car.
- He would forget to bring his swim kit back after most lessons.
- He had no spatial awareness and no sense of danger.
- He didn’t like playing games where he would lose.
- He didn’t play with the other kids on the playground.
- He made silly noises in class.
The list went on and on….. I NOW KNOW this is all part of the Triad of Impairments. I just thought he was a VERY bright special little boy, and enrolled him in everything I could: Cubs, Beavers, swimming clubs, and karate. He appeared to love music, so he had guitar, piano, keyboard, violin, and drum lessons.
How Did My Son Fall Between the Cracks
Why was it not spotted? Why did I not defend and question my child’s behaviour? Why did I not demand answers??? Speech therapy was not needed; he started to speak in sentences with words I had to look up in the dictionary. He was tested by a school psychologist, but nothing was ever fed back to me only that he was in the top 2% of his school, and because of this and the fact he just aced everything he ever tried (except for sports, he has dyspraxia too !), he just slipped through the net……I should have done something………….
All through his primary education, I sat back and left my child to struggle with his sensory issues, sensory issues I did not know he had. Guilt is one of my biggest issues (one of many Sara said I would experience).
Secondary school (age 11-16), he kept on getting top marks; he was entered into statistics maths exam at the age of 13 and he passed with flying colours! He still didn’t have any friends. I tried every week to bring his classmates home for tea; he played in one room, they played with me in the other. AGAIN, why did I accept this?
I had to take him out of Scouts. He had been in several years, but a new leader did not want the extra ‘work’ that Cliff appeared to need. They ridiculed and teased him….AGAIN I did nothing, I just thought it was part of ‘kid’ angst.
In his final year at school (2010), a newly appointed SENCO (special educational needs coordinator), (I believe an Angel in disguise) came back from an Autism course. She was full of energy and advocacy and made an appointment to see us. She suggested that my son may be on the Autistic spectrum; Cliff had spoken to her and wanted her to brooch the subject with us. Here is where denial kicked in! I did not want a label…
How I Felt About the Diagnosis
The SENCO wrote out a 20 page document highlighting Cliff’s behaviour in school. Then we had three visits to the educational psychologist, and February 2010, he received his diagnosis of Aspergers, dyspraxia, sensory integration difficulties and mild ADHD.
A question I have asked several people, and I am still not really sure I understand …why now?
Many of the people and professionals I meet, including Sara, have told me whatever we did as a family, helped Cliff throughout his school life and that we ought to be proud that we managed as we did, and how much he has achieved through all the adversity he has gone through ALONE!
Guilt again sets in……he has never really been a ‘happy’ child, IF I had done ‘something’, would he have been happier? Would his journey have been ‘kinder’ for him?
How Does His Future Look
I am awestruck at his achievements… and I am a proud Aspie mother. He has top academic marks, excels in many areas in music, performed in the local theatre, and has performed in the Oswestry festival four times now, several Christmas concerts and several summer concerts.
He wants to go to University. He has mentioned London …Royal College of Music. He wants to do Music and Psychology; then he wants to become a Music Therapist. Wow, I am so proud.
I KNOW academically he is capable but I am so scared. He cannot tie his laces, I have to lay his clothes out, he can’t brush his teeth without gagging, his personal hygiene (well!!), he struggles to cross the road, and he still hasn’t any friends. Now he is not being bullied, and college students are more accepting of his idiosyncrasies. However he still forgets things are hot, he is so trusting and naive….how can I let him go….
I think I have ‘guided’ him along the path that has helped him to be who he is…without having to conform, to not give up on the unique individual HE is ( Rara Avis) even if perhaps I didn’t know ….my gut instinct, is he would not cope in London.
Another emotional book I love is All Cats Have Asperger Syndrome by Kathy Hoopman. I gave a copy to Gaynor Styles, and a mounted frame with the poem I wrote for her and Cliff, as a leaving present. She was quite emotional, and said she would make sure every teacher in the school READ this book.
How I Thanked My Angel in Disguise
The poem flowed from me, and only took only twenty minutes to write. I did not need to rewrite; the words just seemed to write themselves. I left it out for my hubby to read as he was working nights. He read it and had to wake me, we just held one another that night with tears flowing, and the emotional release was powerful.
This is my poem written for my Son and the Angel of a Teacher that first spotted his ‘diffability’. Our son was 16 years old, diagnosed in February 2010.
Rara Avis (for you both)
He tried very often to try to fit in,
The gift of a friendship, he never did win.
He took solace in Music, it was his soul.
The grasp of awareness, he just could not hold.
He struggled at playtime and finding his way,
In his own little space, by himself all day.
He read and he read, often two at a time,
“Oh, that’s just him, he won’t toe the line”.
Imagine a world without conversation,
No one talking to you, alone as a Spaceman.
In a world that is different and totally strange,
Not BLACK or WHITE, but slightly orange.
Imagine not understanding the reason why,
No one stopping and sharing, not even a “Hi”.
Because he is different, they call him a freak,
ALL his life,… LEFT…,to turn the other cheek.
Reciting FULL episodes of things that he likes,
No football or cricket, not even a bike.
Solving maths problems in the blink of a eye,
Not eating with others, he just could not try.
ALONE and forgotten and misunderstood,
THEY should have been kinder, I wish that they would.
Into the wide world, he will have to go,
How we shall manage…I just do not know.
THEN, from the clouds of Heaven above, an Angel appeared,
The World just stopped still, and our Family cheered.
SHE saw a light in our child’s eyes,
With empathy and structure, her name Gaynor Styles.
She showed us the light and his unique gift.
She guided us forward, my heart it did lift.
IF not for her, where would we be still…?
NOW onward and upward, over that hill.
OUR thirst for knowledge, our hunger to succeed.
To give Clifford confidence, all the skills he will need.
AS we strive forward, we will think of you,
YOU gave us the start, You made Clifford “new”.
REMEMBER us with fondness through the passing years,
The Student who was frustrating, did he bring you to tears?
OFF to College and Uni? IMAGINE all our fears !.
OUR SON Clifford, the boy with Aspergers.
Love and stuff,