So I recently started a Facebook group for parents of "exceptional" (read: atypical) children who are committed to finding positive parenting techniques in addressing their needs. The group is designed to be a support/information sharing one and it is already taking off like wild fire!
One of the components that I thought would be interesting was to build a "profile" on our children that really examines who they are and what they are facing as obstacles. This way, we will be able to match ourselves to parents facing similar struggles and can help educate each other on things that may be new to us.
To kick start this, I am profiling Sammie. So here goes:
Age: 3.5 years
Describe your child in using 5 positive words: Loving. Intelligent. Adaptable. Persistent. Sensitive.
Diagnosis (if applicable)/Noticeable Differences:
Sammie has been diagnosed with a Severe Communication Disorder (expressive/receptive). We are currently investigating him for Autism Spectrum Disorder (Moderate to high functioning) and Sensory Processing Disorder (severe to moderate). There is a great deal of confusion among all his practitioners/doctors as to whether Sammie actually has Autistism or not because he doesn't display many of markers for a severe (or even a moderate) social delay, however it is very likely that he will eventually get an ASD diagnosis for lack of better options. That said, the new DSM V manual describes a new condition (Social Pragmatic Communication Disorder) which may wind up being a better fit for him. For now, we are proceeding as "ASD- Working Diagnosis". There are also reasons to believe that Sammie is "twice exceptional", a term referring to special needs children who show gifted abilities in one or more areas. (Sammie shows advanced abilities with puzzles and mechanics, has already begun to play songs by memory on the piano. We suspect he may have a very high IQ, but testing is difficult because of his communication issues).
Age when differences started to become noticeable:
Sammie was "different" from birth. He displayed an unusual amount of fascination with how things "work", and it was apparent that he was exceptionally intelligent in areas of mechanics and function. He also had unusual gross motor capacities (ie: was walking a balance beam backwards at 18mos). He never learned to speak with the exception of occasional babbling, mostly nonspecific. He also never mimicked in the way that is typical for children of his age (blowing kisses, waving, etc). We have been suspecting that Sammie may have autism since he was around 6 months old.
We have only recently started to really understand Sammie's sensory issues, but looking back we can definitely identify that these were also apparent from birth.
Since he has started school, Sammie's social skills and receptive communicatiom skills have exploded, amd he is also making great gains in expressive communication. He has learned to sing (wordlessly) several songs and shows signs of an eidetic memory.
How do these differences affect his/her every day life?
Being minimally-verbal has actually presented Sammie with relatively few challenges because he is extremely strong with non-verbal communication. However, his difficulty with receptive language makes learning "every day" concepts much more difficult for him. He is still not toilet ready and struggles with some fine motor activities like using utensils.
He is an extremely adaptable kiddo who is very good at identifying when he is overwhelmed, and seperating himself from the situation. However, this has led to difficulties in forming social relationships because he is often overwhelmed by the presence of his peers.
Sammie struggles with bright lights, so our house is usually kept quite dim. He also struggles with loud sounds, which wasn't a problem until his sister was born.
Sleep is an ongoing adventure for Sammie. It is the proverbial "root of all evil" and is always our number one focus. Food also impacts him which has led us to adopting a very strict diet for him. (Gluten, casein, dye free. We are also working on removing soy and non-naturally occurring sugars).
He attends a specialized, segregated school program which has gone amazingly well, though we did have to make a classroom change last week because of sensory issues.
Sammie very rarely has meltdowns, but when they occur, they are all consumming and can lead to extremely volatile behaviour. While Sammie is never aggressive, I have been injured in the past by the force of his body movements, including a black eye and a fractured rib. As he gets older and stronger, the risk of injury to himself and to others grows greater.
Sammie's incredible proprioreception and vestibular needs mean that he is ALWAYS on the go. We are constantly working on finding new gross motor outlets to help him regulate his body.
Strengths: Sam is extraordinary at showing us how is feeling. He is generally very calm, cool and collected. He has an amazing memory and is very determined. He is funny, charming and an absolute joy to be around. He is loved by everyone who meets him.
Weaknesses: Communication and sensory regulation are the big ones. He is also extremely persistent and has a very strong personality, so trying new things and being open-minded is a struggle.
Tactics used to accommodate their needs:
DIET: Sammie is 100% gluten free, dye free, msg free and casein free. We are also eliminating soy and working towards a paleo/clean diet.
SENSORY DIET: The VAST majority of Sammie's challenges lie in sensory regulation issues. We have him a strict sensory diet, have built many sensory outlets for him, including a modified snoezelen room and a gross motor play space. We are working closely with an OT to continue building on these.
SPEECH: Sammie works with an SLP and is starting a modified PECS/POD system. We do a lot of pivotal response work with him as well which has proven effective.
SOCIAL: We have enrolled Sammie into a segregated special needs program where he interacts with peers 4 or 5 times a week. We also ensure to complement this with a lot of scheduled time with his non-school friends. Sammie is also taking Karate, swims several times a week, and will be doing a music program in the winter.
The number one tactic we employ is philosophical. We believe in loving and accepting Sammie for who he is. We do not try to "change" or "cure" him, as much as we are trying to give him every opportunity we can for him to grow on his own. We believe that Sammie "speaks" in his actions and behaviors, and we strive to learn his language as best as we can.
Name 3 short term goals for your child:
Within the next 6 months, I would like to see Sammie make progress with toileting. I would also like him to try learning 3 new words, and to have him eat 3 new foods.
Name 1 long term goal for your child:
To find a way that is comfortable for him to communicate his needs/wants/thoughts with those around him, whether through speaking, writing, signing, etc.
What do you excel at in parenting your child?
I accept Sammie for who he is, and we are deeply bonded. I also am an avid reader/lifelong student, so I am usually one step ahead of his therapy team in trying new things and identifying needs. I have been told that I am a tremendous advocate for him, though I take great issue with this term and do not apply it to myself.
What do you struggle the most with?
Balancing the needs of my "exceptional" son with my spirited and equally exceptional young daughter (8mos). Attachment parenting is very demanding in the first year, and I am often overwhelmed by trying to do it all. I struggle with SMS ("super mom syndrome")
What is your biggest fear concerning your child's future?
That the world will be cruel to him because he is so different. I read every day of the horrific abuses that are done to special needs children and adults, and I am petrified because my son doesn't have the words to tell me if something bad is happening. I have nightmares about this almost nightly.
What is your biggest dream for them?
That he be happy with himself and with his life in general. That he never underestimate his abilities and talents.
Who/what are your greatest allies/supports?
I have a remarkable network of friends and family who are amazing sources of support. Sammie's school team is also amazing. And google is my best friend. ;)
What topics are the most important for you to learn about/discuss?
Self care. Balancing the needs of various siblings. Letting go of guilt.
Are there any topics that you feel comfortable in assisting others with?
I am pretty much a walking encyclopedia on current research for ASD and SPD. I am constantly reading/researching, so I may be able to help people who are very new to all of this, especially when it comes to identifying your child's sensory needs and brainstorming creative ways to have these needs met. I also have an intimate knowledge of the workings of government, including FSCD and Alberta Ed. If you have questions about the "system" and how it works, I'm your gal ;)