This
letter was drafted after much consideration and discussion between Jason and
Zita about how to best introduce the programming, steps and expectations that
we are following to best support Sammie in finding his voice. It will be
sent to the entirety of his "social circle" including all potential Allies and Hindrances.
We
have defined Allies and Hindrances as the following:
Allies:
Those
who are actively engaged, interested, and supportive of Sammie's unique needs
and are prepared to take the necessary steps to ensure that he reaches his full
potential. This includes adopting all the recommendations provided, refraining
from presenting labelling behaviours, and actively engaging with him in ways
that encourage his growth and development.
Hindrances: Those who, directly
or indirectly, act in opposition to the best interests of Sammie's needs by
either:
a)
attempting to "define" Sammie in terms of his challenges instead of
his strengths, and/or focusing excessively on his delays.
b)
ignoring (deliberately or inadvertently) his needs and refusing to engage in
activities that will assist in his development.
__________________________________________________
Dear
Loved One,
If
you are reading this letter, it is because of the love you have shown us and
the positive impact you have had on our lives and on the life of our son,
Sammie.
First,
we would like to take a moment to thank you for your ongoing love, support,
friendship and commitment to our family. We feel extremely blessed to be
surrounded by such a wonderful community of friends and family, and we want you
to know that you have all touched our lives in special and important ways. We
are better parents, and people, for having you in our lives.
As
was suggested by our Early Intervention Counsellor, we would like to take a
moment to explain to you a few updates on Sammie's development, as well as to
share with you some of the directions that we, as a family, will be taking in
addressing his unique needs. We would also like to clearly outline for you some
ways that you can help support us on this journey, as well as identifying some
behaviours that we are asking you to avoid. We would like to ensure that our
expectations and needs are as clearly laid out as possible, so that we are all
on the same page.
As
many of you know, Sammie is blonde. Some children are born blonde. Others
become blonde throughout their lives. Sammie happens to be one of the
former; it is something that we’ve been closely observing for a long
time. Sammie’s blonde hair makes him sometimes stand out from his
peers. Not everyone has blond hair, and it can seem a little unusual to
people who are more used to brunettes or redheads.
Being
blonde presents some unique challenges. Sammie has to be careful in the
sunlight since he is particularly prone to burning and he has more sensitive
skin and scalp. Sammie is also at a higher risk for skin cancer and other
dermatological conditions. We are working with specialists to determine which
of these risks are the most important to focus on right now.
Of
course, Sammie is so much more than just a hair colour! He is a funny,
charming, radiant and enchanting boy who loves to laugh, smile, build things,
run, jump, swim, and dance, read books, and snuggle. In most ways, Sammie is a
completely “normal” little boy. In some ways, he is exceptionally
advanced. In others, he has some growing and catching up to do.
The
most important thing to note is that we do not want to define Sammie by his hair colour.
This would deprive him of all the traits that make him a remarkable boy.
This doesn’t mean that we are ignoring his hair colour, or the risks that may
be associated with it. It simply means that we are focusing on his best
traits, while still working on how to overcome the everyday challenges that he
will face.
As
I’m sure you’ve all figured out by this point, Sammie’s hair colour is an
analogy. But it speaks to the heart of the issue. As you all know, Sammie
is experiencing some delays in communication and social development that we
have been addressing for the past several months. Already, Sammie is showing
massive improvements and we are extremely confident that he will continue to
overcome his obstacles one day at a time. However, to quote our wise
sister, Heidi, “it’s a marathon, not a sprint”. It will take a lot of
work, patience and time before Sammie is at the level of his peers in these
ways. And yes, there is a possibility that he will always present some
delays.
We
know that you love Sammie and want to see him succeed to the fullest of his
ability. We share that desire, ten-fold! At this time, Sammie is
working with an Early Intervention Counselor. He will also be seeing a
Speech Language Pathologist, an Occupational Therapist, and many other
professionals who are both highly educated and experienced child-development experts. We attend several
activities, playgroups and seminars to best learn how to address Sammie's
needs, and we have already begun to see enormous changes in Sammie’s
receptive and expressive communication, as well as his social integration. We
are reading many books, and have consulted specialists in almost every field of
Early Childhood Development.
Sammie’s
development is in exceptionally good, caring and committed hands.
Many
of you have shown a specific interest in Sammie’s development by asking
questions and offering advice and opinions on the matter. Please know that you
are always welcome to share your thoughts and points of view with us,
especially when you are commenting on how much improvement you have seen! We
are so thrilled to know that you are noticing the remarkable changes and growth
that Sammie is exhibiting. We are exceptionally proud of him, and sharing
praise with him- and with us- is very beneficial to our process!
If
you are looking for other ways to help, we would also like to suggest the
following:
•
Play
with him, on his level, and let him show you what he is interested in
and what he is good at. Make sure to talk to him as often as you can, and give
him a chance to respond (verbally or non-verbally). Get down on the floor, play
with what he wants to play with, and relish in watching him enjoy it. Some of
his favourite activities are trains, blocks, lego, climbing/running, playing
with puzzles and balls, and reading books. Don’t try to overly “direct” him-
instead let him lead the activities. The is the single most important
thing you can do to help him grow.
•
When
you are speaking to Sammie, please keep your sentences short, sweet and to the
point. His receptive skills are very good, but sometimes the point gets
lost if there are too many words. Two word phrases are ideal for
language development because children are more likely to repeat the second word
of a phrase. So instead of saying “Sammie, would you like some lunch?”
which is long and advanced for him, trying saying “Is Sam hungry? Want
food?” Here, the emphasis and learning will be on hungry and food,
the two key words we really want to convey to him. If you are
comfortable with simple sign language, feel free to use these as well. If you
would like to learn a few signs, we would be happy to show them to you.
•
Sammie
is still learning about “give and take” play. This is when two or more people
take their turns, and interact with each other. A good way to initiate this
type of play is by copying his actions. Try mimicking what he is doing. If
Sammie places a block, try saying “Good job! My turn!” and also placing a
block. Then say “Your turn!” and see how he reacts. This is called a
"non-verbal conversation" and is the very first step to understanding
and achieving language. Sammie loves this type of play but may take a few
minutes to understand what you are doing.
•
Give
your praise actively and enthusiastically! When Sammie does something that is
especially good, clap your hands and say “Yay!” When he finds something funny,
laugh along with him and say “Good joke, Sam!” Show him that you are watching
and engaged with him.
•
Be
clear and consistent with rules and expectations. Sammie may need things
repeated more often than once before he understands and is able to follow your
instructions. Routines and consistency are critical for him.
•
Be
patient! It’s going to take a while before Sammie fully masters all the new
skills we are working on. Sammie is extremely sensitive to tone and responds
very strongly to anger- please be mindful of this when coaching his behavior
and remember that he is still very young, and this can be an overwhelming
process for all of us.
There
are also several things that we are going to request that you work hard at
avoiding. Some of these types of behaviours may seem helpful at first,
but ultimately can results in derailing our process. It is extremely important
that every in Sammie's life ensure that they are treating him and his unique
needs in positive ways.
•
Pretending
that he is “fine” or ignoring his unique needs. This is not going to help
Sammie, and instead may make him feel ashamed. We speak very openly
with Sammie about his growth, the same way you would with any other child.
Sammie is aware that he is non-verbal; pretending that he isn't will not help
him.
•
Using
“negative” language when talking about Sammie’s challenges, especially when he
is present. Remember: there is nothing “wrong” with Sammie; just like his
blonde hair, these delays are part of who he is and who he has always
been. Despite his communication delays, Sammie’s understanding is very
strong and he is listening to every word we use, so please only use positive
language when he is in the room. (Examples of negative language to be avoided
at all costs: "Have they figured out wrong with him?", "Sammie
isn't normal", "When is he going to talk?", "He must have (insert
medical condition here)" or otherwise referring to Sammie's "problem".)
•
Please
refrain from attempting to “diagnose” or otherwise label Sammie’s
behaviour. We are working with a full team of experts and specialists,
and at this point in time they do not feel it is appropriate to qualify
Sammie’s delays under any label. Significant observation is still required
before we are at the point of using terminology beyond “developmental delay”.
In fact, most of the kids in the Early Intervention Program never receive
“diagnoses” because they are able to overcome their challenges and never fit
into a clear “box”. The only people who are qualified to fully diagnose
a child with a learning disability are doctors. As such, please do not
attempt to ascribe to him any conditions that have not been diagnosed,
including but not limited to “autism/ autism spectrum disorder”, “ADHD”,
“Mental Retardation Syndrome”, Sensory Processing Disorder, etc.
•
Related
to this point, different symptoms have very clearly defined medical
definitions. Again, please do not attempt to identify any “symptoms”
including Repetitive Stereotyped Behaviour (RSBs or Stimming), hyperactivity,
attention deficits, learning disabilities, fine or gross motor skill delays,
etc. If these
symptoms are present, someone on our team will identify them. At this
point, none of these symptoms have been identified by any of our experts.
Unless
you have our explicit permission to do so, please refrain from discussing in
depth Sammie's development with others as it is possible that your information
is incomplete, not up to date, or inaccurately represented. While you are
welcome to share the basics, including the fact that Sammie is non-verbal and
is working with a team of professionals, going beyond this could result in very
negative consequences including
a) adding confusion to an already complex issue,
b) incorrectly assigning labels and- subsequently- behavior
patterns to Sammie,
c) negatively impacting how others perceive him, and- subsequently- how he
is treated,
d) negatively impacting how he perceives himself, thus delaying his
ability to grow and learn,
e) negatively impacting how Jason and I perceive those around
him, making it harder for us as caregivers to give Sammie the tools that he
needs,
f) negatively impacting how Jason and I perceive you, and your
relationship with Sammie.
The
important thing to remember is that we are all on the same side when it comes
to our children. We all want the best for them, and we all want to share and
show our love as best as we can. We also want to protect them from things
that could hurt them, and want to ensure that they have all the tools and
support they need to succeed in their lives.
The
greatest mistake anyone could make would be to focus on and define Sammie by
the fact that he is non-verbal or that he engages differently than other kids. This not
only deprives him of the opportunity to show us just how awesome he is, it also
deprives us of the sheer joy of watching him grow and flourish. Every
day, Sammie shows us more and more of the beautiful, amazing, intelligent,
charming, sweet, funny and loving little boy that he is. Focusing on
anything other than all of his strengths is doing yourself- and him- a great
disservice.
And
remember, Sammie is most affectionate and loving to people who are openly and
outwardly affectionate and loving towards him. To love him is not to
judge him or to try to change him; it is to support him, encourage him and
engage with him on his level. Then you will truly begin to see the unbelievable
person that he really is.
With
love and sincere respect,
Jason
and Zita
