Wonderful recently released video narrated by J.K. Rowling, founder of Lumos, highlighting the harmful effects of institutionalization on children. It speaks to the hope for these 8 million children worldwide if only funds and resources are re-directed towards communities and families for support and away from orphanages.
Some time ago, Cody’s Occupational Therapist and I were having a conversation about Cody’s future. She wanted to get me thinking about what types of activities, hobbies and interests Cody might have when he is an adult. What will he do during his downtime when he is 25? 40? 65? What types of activities will bring him enjoyment, enrichment, improved physical health, a sense of accomplishment? In thinking about this, I realized that it is my job and that of others in his life to expose Cody to many different possibilities; just like we do with all children…in the hopes of sparking a flame and finding experiences and aspects of this life which resonate, motivate and inspire. Not just for now, but for years to come.
One such idea is climbing! He responded so well when we took him to the creek a couple of times and guided him as he traversed up and down the boulders surrounding the stream. It was obvious he has a sense of adventure, that he is not scared to try challenging activities, and that the pride radiating from him brings so much joy.
Dan and I figured we’d introduce Cody to climbing at the local climbing gym. My idea is that slowly but surely we will build in him the sense of security, familiarity and capability from improving skills so that he can perhaps enjoy this challenging activity in increasing levels for years to come! The thought brings a smile to my face.
We had our first visit to the gym this weekend. It was evening, just the 3 of us and we had no sense of urgency or need to rush the process. When I was helping Cody get ready to go at home and was talking about what we were going to try, he was thrilled. Smiles, giggles and bursts of jumping told me this kid is ready for adventure (even though he had no idea what was in store).
The noises, smells and textures of the gym are very unique. There was a young boys’ birthday party going on in one corner and they were whooping and hollering as they raced up the wall in pairs repeatedly. Cody immediately plugged both his ears. The floors are uneven, with 1-2 feet high mats dispersed throughout. Cody didn’t mind the mats, in fact he quite enjoyed exploring them and the feel of them as he walked. The air is stuffy and the slight smell of sweat permeates the space. The dryness of the chalk used on the climber’s hands seems to have infiltrated the air we breathe. There is a nervous excitement as the 3 of us try to determine the best way to begin.
Dan figured we should start with bouldering; perhaps for a few sessions – climbing without any harness or ropes so that Cody gets the feel for how his body should lean forward, against the wall face, not depending on the harness or ropes. We start by standing beside the wall, showing him the holds and talking through the process of climbing. We let him feel me as I climb up a few feet, then Dan. My goal is getting him to put one foot up on the first hold, hold on to 2 holds with his hands and push up so his weight is on the foot hold entirely. I figure if we can get him this far, it would be a success for today.
When we first try putting him into position and try to place his hands and feet on the wall, he resists…biting his hands, screaming out and pushing us away. He does not, however, pull me in an attempt to leave, he does not say his familiar phrase “back to the car” (which is hardly discernible, but oft repeated whenever he wants to escape a situation), so I know he wants to try…but he’s scared. I remember once again, that he’s blind…he needs lots of time to explore first; to listen, to feel, to arrange his thoughts. Why do I want to push through this part so often I wonder to myself? It’s hard to be patient, to give space and time…to wait him out. I ask him if he wants to sit on the mat which lies at the bottom of the wall for fall protection. He smiles as he sits down and reaches all around with his hands; slapping the mat, feeling how it gives as he pounds it and the texture of it as he strokes. He sits and listens to the activity around.
I tell him these words; words he has so often heard from me that seem to bring calm and safety: “Cody, I know this is hard. I also know you can do this, and that you want to do this. We will wait for you. Take the time that you need, and when you’re ready we’ll be right beside you to help.”
Many moments pass and all of a sudden Cody goes from complete stillness to a flurry of activity. He bolts upright and reaches out in front of him to the wall, searching for the hand holds and reaching up with his foot for the first foot hold. Dan and I burst into action; guiding with our words and our hands…giving Cody the support he needs to push through his fear and climb.
Climb my amazing and brave boy, climb and climb and climb.
If you are a parent with a child who has special needs, do you know what they do all day at school? Do you know what goals they are working on and what activities make up their day? Do you know that they have the resources they need to calm and regulate? Do you know if they are getting the fresh air and physical exercise they need?
I.E.P., otherwise known as Individualized Education Plan. I called it dreaded because it can spark fear and loathing in us as parents. The document itself is long, wordy, complicated…overwhelming. The process of writing it means sitting down at the table with the school education team, feeling at times alone and unsure. We are the parents, but we count on these people to know what to do with our child…and yet, we know that school can always be better than what it is. We know that we have to be their strongest advocate and ensure that school is meaningful for them, and we know that the school team has a lot to learn.
So yes, it is dreaded, but as I’ve begun to realize in the last years, it is also an amazing tool and opportunity for us as parents to take a lead role in ensuring that school is meaningful, effective, and enjoyable for our children. I wanted to share a few tips I have learned along the way.
- There is never enough time in the meeting itself to cover everything. It is often the only opportunity the whole team has to speak together for several months if not more. So, I always do advance work before the meeting. I look over the last IEP and make notes on each goal and objective. I use the following questions as tests as to whether the goals and objectives should be changed or taken off entirely: “Is it meaningful, is it functional, is there an end result which Cody will relate to and which is measurable? Does it relate to Cody’s life in a relevant way?”
- A question one of Cody’s teachers posed which I agree with when considering IEP goals/objectives is: “What do you see Cody doing in 5 years? What do you hope he will be able to do and understand on his own? And in light of these, what does he need to be working on now?”
- Research, research, research. I spend time online and emailing other professionals across the continent about what Cody should be learning and doing in school. What are other children similar to him doing? What types of adaptive equipment and technology are they learning to use?
- As part of my preparation, after I have reviewed the goals and objectives and determined what I hope to see in place, I email my initial thoughts to particular members of the team (both in and out of school) to get their initial feedback and to ask them what they feel we should be focusing on this year. Often particular team members will have particular areas that they work on and particular goals which fit in their scope. For example, I corresponded with Cody’s Occupational Therapist prior to the meeting, reviewing gross and fine motor goals, self-help skills and sensory needs.
- I ensure that members of Cody’s team outside of the school are part of the IEP process, such as his Speech Therapist and his Occupational Therapist. Having these out of school professionals proves invaluable time and again. They offer fresh perspectives and ideas that neither you nor the school team may have thought of. They know your child in different contexts and know them well if they are working regularly with your child. School based therapists often only are available as consultants, there is little resources within the district to receive regular therapy within the school setting.
- I email the teacher or Team head (whoever is running the meeting) and let them know that I would like to have some time during the meeting to address my thoughts and hopes for the year. I want them to see my passion and hopes for my son, hoping that it will inspire and motivate. This year I started with “My hope is that when Cody wakes up on a school morning he will wonder “What will I explore today that is new? What will I discover that I can do today all by myself?” I prepare notes on goals and objectives, take note of specific activity ideas for school learning, and think of special adaptive requests I may have for Cody. I make a checklist which I take to the meeting which I can review before the meeting is through to ensure I have addressed everything. Sometimes, after initial introductions, I just take over.
- If I have specific requests for adaptive equipment and activities I would like Cody to have access to in school, I not only mention them at the meeting but I also put them into writing and email them to the teacher and school team as well as the principal if applicable. It is always best to have these requests in writing for later reference. If I believe strongly in my request, I will rarely take no for an answer, instead I seek out the person who can say “yes”. This may be the principal, it may be the district Special Education director, it may even become a political issue if nothing else works (I have yet to get to this point!). Often written support from therapists hired privately is very helpful.
- I ensure that the IEP goals and objectives have built in accountability. We need to track the successes and failures so we can continue to mold the IEP into a document that best helps Cody
- At the end of the meeting, if possible, I have outside therapists take a look at the classroom(s). I ask them for any feedback they may have on lay-out, safety and sensory issues.
- I become the team leader…as you can see from above, most all of these tasks I do in preparation are technically those that the school team leader should be doing. They should, they would like to, but they just don’t have the time or resources to…at least not to the degree they should be, not in my experience.
- I believe in the team. I remind myself that they all truly want school to be meaningful for Cody. I approach the team meeting as just that…a Team. We are a team coming together for Cody’s benefit. This means we have respect for each other’s ideas, we consider opposing views, we speak with respect to one another, we plan together, we commit to our various tasks and to being accountable to one another.
We want our children to succeed in school as in life. School is this amazing world of opportunity; 6 hours each weekday which is paid for, with trained and motivated staff, resources and activities. As parents, we can take a lead role in ensuring those hours are well spent! We can take advantage of the dreaded IEP document, mold and shape it into one which empowers our children, motivates staff, provides a map to follow, and meets our special children exactly where they are at. By doing this, we are telling them and the world that they are infinitely valuable and infinitely worth every effort we can make on their behalf.
Today I read a post on Facebook which has struck a chord with not only me, but also the 40,000 plus others who have “liked” it. It was written by an actor named Kelvin Moon Loh, who, after witnessing an autistic child cry out during a quiet moment of the production was appalled at the heckles and jeers he heard in the audience, those calling for this child to be expelled. He was compelled to write a post about this experience:
Very passionately, Kelvin expresses his belief that “theater is created for all people”, and “ultimately…to bring people together, not just for entertainment, but to enhance our lives once we walk out the door again”. He asks, almost imploringly, “When did we…become so concerned with our own experience that we lose compassion for others?”
I also feel anger, sadness, yet also a measure of encouragement from this story. Among the heckling and the jeering, Kelvin’s is a strong voice of love.
Sometimes, as we go about our days, we face people who may cause discomfort, who may be unfamiliar or unwelcome. For whatever reason may be, these people may disrupt, may interrupt, they may interfere with what we value as important. They may seem to be in the way, an impediment to our progress or enjoyment.
But we have a choice, thankfully we always have a choice. Will our voice, though it may not be heard, be that of a heckler?
Will we reach past our own level of comfort and security?
Will we let go of our concern for our own experience?
Will we realize that we are all players in the theater of life, that on this vast and diverse stage we all have our own roles to fill, that we are all wonderfully and beautifully different?
Like Kelvin, will we choose the voice of love?
I met a Mom the other day
She has a special boy, just like me
Though we’ve never met, I know her
As she gestures with her hands, I know those hands
I know those hands of care, tireless hands which have cleaned and clothed a boy too old to need help
I know those hands of love, gentle hands that have wiped the tears
I know her shoulders that hang low, fatigued from effort, exhausted from discouragement
I know those eyes, wet from tears that try not to fall
As she tells me her story, I know that spirit
I know that strength and stubbornness, the tenacity that never quits
I know that fire and ice, a spirit that can move mountains
I know those arms she wraps around me in a hug
Strong arms which have lifted a boy too old to be carried
Weary arms which have handled heavy loads
As she talks of her choices, I know her mind
I know the thoughts that toss and turn inside, the questions that never stop
I know the sharpness and clarity, the focus of her mind as it finds an answer
I know those legs that would walk the earth for her boy
I know those knees which have hit the floor when she feels she can go no further
As she speaks of her son, I know her heart
I know it’s bruises and cuts, the pain that it has carried
I know its infinite love, how it beats and swells at the thought of him
As she opens up about some recent good news, I know her joy
I know her sigh as she breathes out relief, letting go of worry
I know her hope as she tells me he’s going to be okay
I met a Mom the other day
Though our stories are different, they are the same
Though we’d never met, I know her
When I can’t be there with Cody, others step in. This is not an easy process. Whether it is for the new job I just started, past part-time jobs, my schooling or otherwise, finding respite workers and leaving Cody with them has always been a challenge. There is always the anxiety, especially with somebody new. There is always the wondering; will they understand his attempts to communicate, will Cody feel cared for, will they engage him in meaningful activities and opportunities? Will they really see and appreciate him for who he is; his strengths and potential?
For any of you who need this type of respite care, I thought I’d share some of the tips I’ve learned along the way.
- Write a detailed Job Posting which includes: a description of the job, the rate of pay, the job duties (be specific), characteristics you are looking for, and other considerations. If your job posting is professional and reflects high expectations, you will find that those who apply are also professional and meet these expectations
- Advertise the job posting to people who are passionate about working with the special needs population: volunteers at events and organizations who work with special needs children, staff who work at summer daycamps and organizations for children with autism and other special needs, Teachers Assistants who may have after school or summer hours available, and students and graduates of the Community Support Workers diploma
- Always get 1 or 2 references and create a list of questions for them about your prospective worker: What are their strengths? What are their weaknesses? Any areas of concern? Did you like how they interact with children?
- When introducing your child, never be ashamed of who your child is; talk about their uniqueness and quirks matter of factly…with pride even!
- Don’t shy away from the more intimate or difficult/awkward issues around hygiene and puberty – be mater of fact and open
- Invite them to spend some time with you and your child – they will take their cues from you and how they see you interact with your child
- Let new workers shadow other workers you feel confident in both in and out of home – they will pick up tips on how to interact and motivate your child
- If possible, have them quietly observe therapy sessions; they will pick up tips and ideas for how to interact and teach your child
- Set up a dropbox folder which can be shared with all respite workers and updated as needed, containing: a personal dictionary (your child’s body language, sounds, words, gestures and actions, what they mean, and how to respond), philosophy of how you want them to interact with your child and what your goals are for their times together, ideas for activities around the home and outside of the home, current school and therapy reports so they know what your child is currently working on, a list of likes and dislikes and practical information they need to know
- If there is a behavior or communication which the respite worker cannot understand or doesn’t know how to handle, have them take a video of it so you can discuss it afterwards
- Keep a book for two-way communication for easy reference
Currently, here in BC Canada, I have some support for respite care through a couple of sources. The first is through the Ministry of Children and Family Development. It is called “Direct Funded Respite Benefits” and it is available through the At Home Program which requires you to meet particular eligibility guidelines. In BC, this is the link for information: At Home Program – Respite Benefits
Another source of respite funding, to be used while I am at work or school, is funded also by the Ministry of Children and Family Development, and is accessed through various community agencies. Mine is through the Fraser Valley Child Development Centre. It is called “Supported Child Development Program” Here is a link to more information: Supported Child Development
Although it is not an easy process, handing Cody over to other capable respite workers has been a learning, growing and enriching experience for both Cody and I. We have come to know so many amazing people; like angels who step into our lives – showing Cody care, igniting new passions and ideas and creative approaches, introducing Cody to new experiences, bringing companionship and friendship into Cody’s life. Cody embraces all of them – those who are open and willing to invest in him are rewarded with his affections, attention and friendship. He will often bounce off his chair at their knock on the front door, race to open the door, reach out to hold their hand and pull them in…eager and ready to face new adventures together.
January 15, 2015 I wrote an email to the teachers and therapists who work with Cody which started with the following words:
“I am just continually hitting this point of despairing over the fact that Cody cannot express himself properly to us and as a result has to experience what must be such an incredible sense of aloneness and frustration”.
With this began over 6 months of planning and implementing to create an alternative form of communication using tangible object symbols.
Over 200 emails among team members, and dozens of me reaching out to professionals for advice and ideas across the continent.
Over 20 hours spent in meetings and sessions discussing, planning, brainstorming, problem solving and training.
13 people involved as a part of Cody’s team.
Dozens of hours of research online, over the phone, and in person.
Upwards of $1000 spent on materials and tangible objects (symbols/cues) for home use.
$2480 spent paying consultants and therapists.
Numerous trips to the thrift store and dollar store hunting for ideas, objects, materials.
Countless hours spent crafting and creating cues, including the messy work of mixing epoxy to cover food items in several layers of varnish to be used as cues.
Unknown amount of money and time spent by the school team creating and planning the system for school use.
Dozens and dozens of texts with Cody’s dad, planning and giving tasks as we created cues and brainstormed together.
All these people and resources used to create a new language for Cody…the value of which is priceless.
So, what is this new language? Sighted children who struggle with speech may be taught to use picture symbols, a system called PECS (Picture Exchange Communication System). Due to Cody’s blindness, we’ve had to develop tangible symbols instead- each representing an object or activity or person of meaning to Cody. Once these symbols are created, we begin the process of teaching them to Cody by using them repetitively in his daily routines and incorporating them into his daily schedule. Through regular exposure, we teach him the symbols, with the goal that down the road he will know them well enough to use them expressively in order to communicate with us what is on his mind, what he is thinking of and requesting.
Here Cody and I are setting up his schedule for the afternoon.
This video shows what we do when one activity is done and we are moving on to the next.
A secondary learning activity we are using with Cody involves his Choice Board. On this, we are teaching him to choose his preferred food or activity from a choice of 2 – 3 different ones. He is learning to do this by feeling each symbol, identifying his choice and then passing it over to his partner. It is not until he places it in my hand that I can acknowledge he has communicated.
Here is a video of Cody and I using the choice board so he can communicate his choice.
Although as a team it feels like we have traversed a mountain to get this far, I know we have much further to go. But, my feelings of gratitude and awe to have come to this point are overwhelming. Coming from that place of despair in January, and arriving at this place of beginnings, hope and promise fills me with pride and joy. I am so fortunate to have an amazing team backing me up, to have Cody’s dad and stepmom firmly on board, and to have such a clever and eager student in Cody. He has approached his learning so openly, so patiently and diligently. It is apparent to me that he’s been waiting for this, for his chance to be heard.
Cody’s congenital blindness and autism has resulted in developmental delays in all areas. This includes cognitive, speech, social, emotional and physical development. Physically, he is delayed in areas of motor skills such as gross motor (big movements) and fine motor (small, more detailed movements with fingers and hands). These motor delays as well as his dual diagnosis, make basic daily living skills and self-care much more challenging for him to learn and for us to teach.
It is very typical for children with blindness and other special needs to be delayed in self-care, and this is even more the case because us as parents tend to compensate and do too much for them, for various reasons! I knew a consultant I visited in Cody’s early years who really tried to encourage me in this area. She worked with children, youth and adults with varying degrees of visual impairment teaching them Orientation and Mobility skills. Many of the clients she had did not have cognitive delays and, as is typical, were very strong in school and academics. She would remark on the dichotomy she often witnessed; youth who were getting straight A’s, but who still didn’t know how to get dressed on their own. Parents were doing all the work, making sure their child was on time for school…yet in doing so were encouraging dependency and a complete imbalance in development.
Objectively, as a parent, it is easy to see that this is unhealthy. But, practically, it is very hard to remain diligent and consistent in teaching them to be independent.
I have a fantastic Occupational Therapist who has been helping me set goals and teach Cody in various areas of self-care.
One of our goals is in the area of dressing. He has come so far in the past year! We started by regularly having him explore the parts of a shirt; the neck, the sleeves, the body. We also did the same with shorts and pants.
We then used a method called “backwards chaining”. This involves slowly adding challenge and difficulty, but starting from the end of the action as opposed to the beginning.
If we are to break down the action of putting on a shirt, it would look like this:
- Grab shirt from drawer
- Place shirt on bedside with the proper orientation
- Locate shirt and figure out orientation using touch
- Insert arms in the correct place and reach for sleeves
- Pull arms through sleeves
- Grab shirt by collar and pull over head
- Pull down shirt to cover body
In backwards chaining, I help Cody with steps 1-6, and then wait for him to do step 7 all on his own. Once he’s mastered this, I help him with steps 1-5 and then wait for him to do steps 6 and 7 entirely on his own. In this way, we continually move backwards and he experiences the pride and accomplishment of success step by step.
At this point, Cody has mastered steps 7, 6, 5, and 4! We are working on perfecting step 3. Teaching step 2 (Place shirt on bedside with proper orientation) will be especially challenging. We will have to figure out a way to make the front and back of the shirt tangibly distinct. This involves good tactile sensitivity as well as strong fine motor skills.
Here is a video of Cody getting dressed this morning. As you can see, he finds a lot of joy and pride in his ability to do this much on his own! At this point I lay out his shorts and shirt for him before he sits down to dress.
This video represents many, many hours of discussion and work for Cody’s therapist, myself, family and of course Cody himself! It sure is worth it to see that smile and to hear those squeals of delight! Good work Cody! We’ll keep at it, you and I and the others that care for you. And one day, you will do each and every step, all on your own.
Sadness is here again my love
I see it in your shoulders as you let out a shaky breath
I see it in your face as your cheeks begin their familiar quiver
I see it in the soft pout of your lips
I see it in the tear that leaves its streak as it falls down your beautiful face
Sadness is here again my son
Why has it returned so soon
Is it unbidden, a feeling without a home
Is it a desire left unmet, a hope without words
Sadness is here again my boy
Why does it descend once more
Is it light and fleeting, or will it sit heavy and hold on
Is it a memory of something that once was
Is it a dream of what will never be
Sadness is here again my love
Why does it push me away from you
Does it not know a mother’s arms are meant to hold
Does it not know a mother’s words are meant to soothe
Does it not know a mother’s kiss removes the tears
Sadness is here again my love, and it closes your door
Does it not know that I am still here
Does it not know that my heart still lingers with yours
Does it not know that it is no longer yours alone
Sadness is here again my love
Today was Cody’s last day of school for the year, and his last day at the school he has attended for the past 3 years. This means Everything changes. Today we said goodbye to the resource room, teacher and fellow classmates that he’s been with these past years.
Change is always emotional for me, no matter what. Whether it’s a change in schedule, job, class, Jessica moving on to high school like she did last year, and even the change in seasons – saying goodbye to Christmas or Summer. When it comes to change involving Cody, my emotions can often hit a whole new level of intensity. Whether it’s switching teachers or therapists, switching teacher assistants, switching schools….the emotions often overcome and end in many tears. Tears of gratitude, tears of fear and anxiety, tears of disbelief, tears of hope, tears of sadness, and tears of joy. For, every time something or somebody changes for Cody, it involves an incredible investment of time, planning, creativity, adaptability, teaching, learning, hoping, dreaming and persevering. New teachers and helpers in his life have significant learning curves, environments require significant make-overs, curriculum and goals require creative adaptation. It. is. so. hard. to. say. goodbye… to someone or something after all this time and investment on all our parts.
My emotions have to gird themselves; I have to hold tight to hope and positivity. I have to brace myself for challenges and the possibility of people who just don’t have the right personality or tenacity to appreciate and embrace their new job teaching Cody. I have to hope they believe in him, see his potential and have the patience to wait until he proves his aptitude before they jump in and do his task for him. I have to brace myself for the long wait…the period of time when they are getting to know his body language, his gestures, his noises, his facial expressions and attempts at words – Cody’s only way at present to communicate. I have to hope they catch on quickly so Cody does not lose heart and does not give up on trying to express himself. I have to hope new classrooms have followed the advice of his Orientation and Mobility instructor and been adapted in a way that is safe. Will they remember to keep doors closed so he doesn’t walk into a partially open door? Will they remember to not move the furniture? Will they consider how much descriptive information he needs about his environment, the noises, the activities that won’t make sense to him at first? Will they include him enough and adequately so that his days are meaningful and conducive to learning? Will the next environment be such that I can trust and rest, or will I be checking in regularly and fighting the fight of a mom who is also an advocate?
Changes bring questions, they bring worries, they bring hope. Change also brings reflection on the past. Cody and I have been through many transitions. I’ve learned so much through them; about believing in people, trusting their intentions, building them up through encouragement and letting them know how grateful I am for them. I’ve also learned about myself; that I am resilient enough to get through the emotions, that I am capable enough to help new teachers, therapists, schools and environments as we tackle transitions together, that I am strong enough to be an advocate, to create positive change with a strong and respectful voice. I’ve also learned so much about my amazing son. Cody is adept at handling change. He has taught me how to be open to new people, how to trust them, how to reach out into new places and new environments courageously, how to believe in himself and work through the emotions and insecurities that change brings.
Today, I celebrate the end of a fantastic year and run at North Poplar elementary and a boy who impressed and inspired all who worked with him. I also look forward with hope and determination, and with Cody at my side as my inspiration.