Another year of learning

On the first of this year, my boy turned 12. Another year of growing and learning together; discovering what the limitations and the possibilities are, experiencing their pain and their joys. Reflecting on the year and looking forward, these are some thoughts…

His body is changing, his emotions are often at a peak, he is experiencing his sexuality, he is stronger, and he has a will to exert his independence.  This year he really started to show this by pushing me away when I tried to help, by letting go of my hand as we walk down the street or in the mall or into his school – wanting to go it alone.  I am learning to increasingly back off and let him express his growing sense of self and capability.  I try to remind myself to keep my hands from directing him, to limit my words of instruction, to let him experience his sense of dignity and respect, his need to be in control of his own body.  I realize how important it is for me to continually give him the tools to be independent.

His desire to be courageous and experience adventure is increasing. What I used to see more as resistance, I see now more clearly as uncertainty and fear.  He wants to try new things, and his attempts to initially reject them are not a sign of disinterest, but a sign of genuine fear.  I am learning how to give him more time, to encourage him with words that empower: “You can do this, you are strong, you are brave…”  Together we’ve experienced the sheer exhilaration of conquering his fears together and the pride of accomplishment; the value of which cannot be measured.

He is learning how to manage change and transitions to a much greater degree.  His adaptability this year was severely tested.  With his changing body and the hormones which accompany that, to the change in school (and all the incredible changes this represents from teachers to classmates to schedule to building), the birth of his half-sister Kate and the change in dynamic that represents, to my change in schedule as I graduated from university and started working way more than I ever have (Mom’s not around as much, more caregivers, more transitions).   He struggled through the spring and summer with regular bouts of depression and self imposed isolation which tortured me.  But he kept plugging along.  He emerged from that period and pushed himself through all the changes and transitions.  He grew stronger because of them and has embraced the new school, the new family, the new realities around him with success and admirable courage.

He is increasingly ready to learn and it is up to us to engage him, to adapt materials for him, to make what we teach him relevant and meaningful to him and to the way he sees and processes the world. He is clever and keen, eager and willing.  This means our responsibility is great.  We have introduced a new tactile language. He caught on to it exceedingly quick.  We have devised new curriculum for him at school; involving self care skills in the kitchen, community, hygiene and independent travel.  We try to bring learning to him in a tactile, concrete, relevant way.  This is a constant challenge; it takes creativity and out of the box thinking, it takes a team that is committed and on the same page.  It continues to be a work in progress.

For me the year has been full and rich; full of hard work, disappointment, pain, sadness, impotence…but rich in love, joy, pride, tears, and exhilaration.  I am learning that often there is no solution, there is only the struggle and ability to let things be.  “It is what it is” often runs through my mind.  I won’t always be able to help him or know what is wrong, but he can always know that I’m here, I’m loving him, and I’m trying. I am learning that when I do find a solution, I am tenacious and dedicated and have endless energy towards ensuring it is implemented.  I am appreciating the amazing sense of accomplishment that comes with a job well done.  I am learning to accept work that doesn’t get done; the books on autism which still lay unread and unstudied on the shelf, the learning activities yet to be tried, the ideas yet to be implemented.  I am learning to accept that on many days it is not about learning together; but about being together, enjoying the present for what it is, simply taking the smiles and the closeness as a gift unto itself.

 

This year in pictures…

IMG_0611 Family-Photos-Feb-2015-16scropped IMG_0688 2015-04-11 10.44.15 2015-04-26 12.37.28 2015-04-26 13.34.53 HDR-2 IMG_1409 Cody3 IMG_1109 IMG_1166 BallThrow2 hallway2 photo1 tmp-22 IMG_3076 IMG_1712 IMG_1457 IMG_1616 - Copy IMG_1667 Portable Schedule CodyonMom'sPatio IMG_1802 IMG_2035 Cody pumpkin 2 IMG_2323 Cody and I

 

 

 

Making School Meaningful; the dreaded I.E.P.

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.

  1.  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?”
  2. 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?”
  3. 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?
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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
  9. 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.
  10. 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.
  11. 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.

transitions

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.

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Notes from his Teachers, assistants and Principals

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resized report

From Cody’s report card. I am so proud of my boy.

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Resource Room classmates and teaching assistants