Fun Outlets and Relationship tools

Drumming!

the rhythm tree is an awesome resource and how-to guide for music therapy with kids of all abilities and ages. We finally arrived at drumming by mimicry and a more recognizable trend to one little guy's pursuit of experiencing the world through sound. He is not only willing but able to concentrate on songs, dance, and rhythm. There are so many benefits to time spent with a drum in a group.

We have been spending a lot of time communicating about needs, observations of each other's needs, and how our behaviours or needs impact the behaviours out of those around us. A great supporting tool for parents of children with over-the-top social behaviours is Raising Your Spirited Child by Mary Sheedy Kurcinka. There is also a facebook page you can follow, of the same title. 

Another adjustment we have been focusing on is curiosity and safely exploring interests and pursuing ideas with little to no demands but plenty of readiness. there are opportunities throughout our home for them to act out their interests and be hands-on with their ideas. Since they both do have narrow areas of persistent interest or talent, this helps them get it out of their system and able to absorb new experiences and information, and share with others securely. It really shows acceptance, and normalcy of their interests in all parts of life, and that they are indeed justified in how each sees the world, offering assurance that we want to help, not stifle. For me this is closely tied to homeschooling, but if the child is in the most compatible educational setting, it can be done anywhere.

Plateau

Lately I don't feel as though there has been much healing going on in our home. There are rollercoasters, and dietary plateaus. I have found some reading material to help me out with planning meals around being broke and needing to eat healthy. what to eat when you are broke!

We have been talking a lot about how the body works, we are homeschooling so this gives us plenty of opportunity to focus on what matters most to us at the moment.

Everyone can use inspiration in their day-to-day life, so here are a few videos we have watched this week to keep up the positive energy with the kids.

This week's episode of Dragon's Den Canada on CBC had a series of very young entrepreneurs, wow!

Last week's finale of the first Masterchef US Junior, was encouraging to say the least!

Masterchef US Junior Finale 2013

This weekend we kick off a sensory intervention for 'D' who is sensitive to any and all foods. He has been waitlisted for referrals for support but I've been offered some awesome strategies I intend to do at home. Wait for it in next week's blog!

Relationship Development

I am certainly not an expert, but here is what I know about children on the spectrum, and friendships.

It is very important to ensure the person has typical friends to spend time with, not just people the parents are comfortable with, not just kids from the same therapy programs or classrooms, but kids of different backgrounds. It is important for autistic kids to adapt to change in relationships, yet engage and connect with others over and over again, without fear.

We try to make sure that our boys get at least two social activities with people outside the family every week. This could be anything from a playdate, to respite, a field trip or social skills at the grocery store. There is no reason for me, to consider the possibility that they may not be able to make friends. Why? quite simply, they have been making friends since they were toddlers. The only things that seem to get in the way of that is discrimination, excessive amounts of social trauma, controlling guardians, or not enough advocacy.

As a parent, I find that tolerance without enlightenment, or acceptance without understanding, can be as much of a challenge within the special needs community as it would be assumed to be in society. My experience has been something else; The more proactive the parent is, the more the kiddie will see success, and it will rub off on them.

No matter what type of mom you are, you have probably experienced being told your child has a handicap. I challenge you to see past that handicap and get to know your child, I doubly challenge you to acknowledge that handicaps are fluid, and can be molded into any shape desired. The only real challenge you face from your child is to know when they are really sick, and when you have given up. The thing with giving up, is that it is a relationship dynamic with yourself, and just like the friends your children make, they can come and go. That's just what I think.. because instead of fighting the service providers, instead of fighting the school, instead of fighting an ambiguous label which will take years further for proper social acceptance and understanding to take place.. I focus on the desire for change and growth.

I can't ask for society to move 'faster' to its inevitable conclusions, and I think its wrong to find personal fault with those who operate at the whim of the instruments that fill their day-to-day lives. I truly don't think that fighting the good fight against the world is part of my duties as a mother, but I am pretty certain that my kids are not that different than others, but maybe just maybe it is the ethics of the individual parents that insist on finding individuality in this mass perception of one label fits all.

Proud to have Autism

I wake up in the morning, turn on the educational cartoons, and the boys decide to keep it on, turn it off, or change the subject. We eat breakfasts, sometimes together, often as we go on with our individual wake up routines and grounding strategies. By mid morning we are either in a social activity with people outside of our family, or running through our retention drills.. math charts and spelling manipulatives with 'D', math manipulatives and language charts with 'A'. Then we often play outside, or indoor games before lunch. After we gorge, we usually are looking for more social opportunities, or quiet learning activities (usually the latter). Then we are looking at science activities and environment investigations (home, outside, or personal interests). By late afternoon we are looking for games, ipads, computers, whatnot.. errands or outdoor play. we often eat dinner in two sittings which may be a problem, I don't know but it can be an inconvenience, bath time and hygiene routines occur here.. then they horse around and play together before we listen to music and watch some calm and pleasant cartoons. Slowly, rooms are then tidied up and linen changed while they come up with all these needs that must be taken care of before bed. Sometimes there are late bedtimes, often for one of the reasons above, usually to do with picky eating, missed routine, or wellness consideration.. but its not a big problem. If they can't sleep right then, they will eventually.. usually after catching that missed routine they will sleep...

To be autistic is said to be 'more' .. more happy! more sad :( .. more easily frightened, and often quite shy. When autism parents are faced with typical challenges, they usually get advice that intends to 'maintain-control', or manipulation strategies that encourage more adult-friendly and socially-tolerable behaviours. Rarely is there support that addresses the issue of a child being 'more'. When we look at a child who is feeling more intensely than we expect, it triggers shock, anxiety, and other distressful reactions in the people around them, it often seems unprecipitated, overreactive, or spirited. If you think about the reality that this happens in our lives anyway, perhaps less often, but we do know how to overcome our own stresses as adults, you become more capable of handling autism. When we get past the label, it is easier to see the child.

'Auties' or people with a sensory disorder usually experience their 5 senses in a different way than people sometimes referred to as 'neurotypical'. Imagine a person who has blindness, in many cases their other senses are compensated, and thereby heightened. If I were a neurologist.. I'm sure this would be easier to explain or describe, but as a parent and person with similar experiences in this area, I will say it like this: when one area is triggered, the others may overreact to the environment or in a way to correct itself. Sometimes it is hard or impossible to say which way it will go, often behaviours can be different depending on the senses, and the responses of the rest of the body. Over time and through getting to know an individual, being with a person who has a sensory disorder becomes predictable and manageable. Two terms fall under this part of the autism lifestyle: Sensory diet and sensory profile.

Whether its with professional support, or informally done at home, each child with a sensory challenge has sensory accommodations.. a sensory diet is designed to address the child's specific needs effectively, so he can be less impacted by frequent disruptions to daily routines by his/her nervous system. A sensory profile is a checklist that is then calculated to determine the child's true needs through behaviours they exhibit on a regular basis.

The key to understanding autism (I think) is to realize that our nervous system can send similar messages to the brain, from overwhelming sensory input, as it would physical pain. This is why a child can seem like they are reacting to something as though it is causing them pain, some may be able to demonstrate more specifically than others, in more generally understandable communication strategies, and others react as profoundly as a young child having a temper tantrum. Part of the therapies these children receive, is to help them adapt, communicate, and develop tolerance to these stimuli. Triggers, as briefly referenced to above, can be sights, smells, sounds, sensations, or from internally by digestive issues, lack of sleep, headaches, stress, anything that bothers the average person, can be traumatic to a person who has an autism spectrum disorder. In many cases children develop, grow, and overcome these challenges as they age, but often times not 'enough' without intervention at pivotal points in their development, these can often be looked at as when the child achieves growth from toddler to preteen, or from tweens to teens, and teens to adults. Usually at these points, there are services available for the most challenging aspects of growing up.

Now you may be wondering, or asking yourself (and probably others at some point!) what can you do to get around this challenge while developing connections, friendships, working relationships, or providing care for a person or family with autism.

• Don't be afraid to ask questions. 
• Be yourself.
• Offer positive reinforcement and encouragement, criticisms, judgments, anything with any sense of finality can often be negative.
• Acknowledge and Accept that what you see, hear, smell, sense, or notice may not represent their 'normal'. 
• Know that Autism is a communication and social handicap. Social can mean anything from sorting out 'empathy', anxiety disorders, and stress intolerance. Communication does not mean ability to use language in written, verbal, or electronic means, but to express thoughts, emotions, and ideas. 
• Many people with autism experience the old-fashioned idea of 'left-brain' tendency.. they tend to process their surroundings differently, desire different outlets for creativity or recreation, or simply have differing learning styles.
• All children with autism DO grow and develop, but at delayed rates to typical children. (for instance, my youngest was assessed as being developing at 41% of the pace of typical children the same age).
• NO TWO AUTISTIC CHILDREN ARE THE SAME. There are many interventions and strategies available for kids and adults alike, and they are often tweaked and customized to the individual, and rarely are they (exception being in non-specialized programs such as public school) taught exactly the same. What does occur, is similar symptoms at similar degrees of severity are addressed the same, and this shows the most consistent positive and swift results.

Music for Social Skills

We hit a milestone in our family, I would say, by finally getting an occupational therapist onboard with our home-based learning, and healing plans. With her help we have been able to navigate through the worst days by incorporating social skills activity, gross motor play, and music. This may sound rather basic of preschool and childcare settings, but our struggle has been that, a) he does really only respond well to level tones of voice, enthusiasm and confidence.. otherwise GTFO haha, b) his other sensory challenges and social avoidance has made it hard for us to incorporate him into these things on our own...and last but not least c) his older brother developed a significant intolerance to all things related to dance, and music. Since we had seen such amazing engagement with his little brother when it came to music, where he would walk away from something he got lost in thought on, and would easily and smoothly transition back into the world again... I never let go of that amazement, and now we have some serious support on the sensory, and emotional side!

A few times a day at least I do something involving music, and I don't have to separate them as to avoid triggering a serious response out of 'D'. Where we hit stumbling blocks is if 'D' is feeling antisocial which often happens as a result of his diet issues. We also have been able to incorporate seasonal music into day to day activities, and its okay that I sing along!

Playing london bridge, ring-around-the-rosey, etc.. is amazing for social skills with 'A' he is learning how to initiate interactions and of course, good behaviour, how to be gentle, and what is needed for back and forth nonverbal communication to get across clearly. Of course, as much social play as possible is a great thing!

Interview with the Community: A Mom's Experience

*Introduction*

Tell us about yourself!

How old are your children?

5

Where are you from?

Sudbury, ON

How many children do you have on the spectrum?

1 who was on the spectrum

What is your occupation?

Student

Are you involved in the autism community, if so, how?

No, through ABA and through her circle of care, we worked to integrate my daughter into the mainstream classroom setting, sports, and daycare (without incidents)

How did you first hear the word autism/aspergers?

I have first cousins who have autism. I became aware of Asperger’s much later and likely heard of it through a documentary on autism, Savants, and Aspergers.

What personal interests or activities would you like to share with us?

Take full advantage of the services available. At least try the therapies, the worst thing that will come out of trying behavioural approaches is that they are time consuming and they may not work. But, the potential outcome can be amazing. We, as a family, took full advantage of early intervention and any services provided. The best therapies have been some of the most basic and simplistic therapies. I also feel that we were blessed to have great support within daycare, the school, the school board, and within the multi-disciplinary practices.

*Autism*

How did you first hear of the word autism/asperger's syndrome?

See above

What are your child's sensory issues, and how do you manage them?

My daughter has difficulty eating (not dysphagia, but is a “sensory eater”). She is a movement seeker, seeks proprioceptive input (toe walks and used to spin), has an overactive sense of smell, and used to have great difficulty in a scenario with too much sensory input (large groups).

What lifestyle changes have you taken on in the past, how did they work for you, and what is your life like now?

We continued to maintain our busy lives, but realized early on that within large groups we had to leave or sit far away from everyone. We enrolled our daughter into mainstream programs from a young age but we always knew she had a difficult time adjusting and we spent a long time helping her adjust. We never allowed her to give up – we realized that we had to work or continue going to school and needed her to learn to cope. It sounds harsh, but every good thing that you reap and sow takes time, children are no exception. I didn’t want my daughter to be perfect, all I wanted for her was to learn how to cope early on and accept that nothing in life is easy and that is ok. We stressed that it is ok to feel anxious, it is ok to feel scared, we will just take our time and take longer to do things than most others and that is perfectly fine.

How old was your child when you received a diagnosis, does your child have any comorbid disorders?

My daughter was 2 when we began testing for autism. However, due to long wait times, she was not tested formally until she was almost 4. We began early intervention from the moment it was suspected that she had autism.

By the time we had completed the ADOS test, she was a 3. A diagnosis of 7 confirms an ASD diagnosis, the psychometrist stated that a score of 1 is extremely rare in the general population – a score of 3 is typical of a child with autism who has been receiving therapy (which of course, my daughter was receiving therapy for almost 2 years, the last year of greater intensity).

There are no other serious comorbidities. There is a suspected hazelnut allergy, possible ADHD, and dermatitis. There are just other symptoms of autism which are being individually treated. Our pediatrician suggested we give our daughter medication for ADHD. I did not agree with this, our daughter already has anxiety, this would likely exacerbate the situation – not on my life would I want to amplify a condition that we fought so hard with her over.

What therapies or treatments have you tried?

We did not change our diet; the only drug we have given our daughter was melatonin. She is a poor sleeper and has multiple night terrors in a single night. After 4 years of her not sleeping throughout the night and awaking to piercing screams, we finally took the pediatrician’s advice and administered 6 mg of melatonin every night.

However, we did enlist the help of a speech and language pathologist, applied behaviour analyst, physiotherapist, occupational therapist, and dieticians who worked with SLP and OT.

What accommodations have you had to make for your child, and how do you feel about those?

Nothing, we just accepted that she will likely take longer before she does and tries anything. We were ok with whatever she did. We just wanted to be in her corner fighting. I am surprised how far she is coming. Last year, we received multiple messages from the school about “abnormal” behaviour. This year, she has already won the student of the month award in her class and has received a prize for good behaviour.

What services do your children receive in or out of the school environment?

We have finally exited out of all of her special services – with the exception of the dietician, OT, SLP eating clinic.

What activities is your child involved in outside of school?

Gymnastics, CANskate, and swimming.

What do you feel you and your child need more support in?

I think my daughter still needs help with behaviours within large groups. She still exhibits some separation anxiety, but we’ll just take our time with her.

How do you feel about the services you have accessed up to this point?

I’ve been thoroughly pleased and would recommend any of the multi-disciplinary practices. I have been less pleased with the fast diagnosis of ADHD and yet how many years it takes to receive acknowledgment from other practices to consider testing for ASD. I was shocked, ASD needs faster diagnosing time and should not be restricted to only the haves and have nots.

What therapies or treatments have you tried?

Nothing outside of what is already listed. Just take the time your child needs. Go at what pace works and they’ll surprise you.

Which supports would you recommend?

Family, friends, and take care of you. No one else will take care of you if you don’t. Also, prayer, sometimes it can feel hopeless and seeing your child struggle can be the most painful thing to do. There is no easy solution, but prayer can help not only is it hope but it is a form of meditation that can help alleviate stress within yourself. Caregiver exhaustion is a real phenomenon and take time for yourself spiritually, emotionally, physically, mentally, and environmentally. Renewing yourself makes you more effective, available, and resistant.

*Personal Life*

What do you see as being your greatest challenges, and how do you cope/overcome?

There are enough worries day to day – we’ll cross it when we get there. My goal is to get her into college or university so that she can have the means to provide for herself as she gets older. For now, I want her to do well in school and enlist extra support if needed.

What does your social life look like, relationships, and sentiments towards yourself?

I am busy with school, my social life is primarily school right now. I have a large family and many friends but because I am busy with my schedule, my daughter’s sports, and studying – it feels like there is little time left over.

What does your support network look like? Social life, friends, family, supporters.

Family, friends, family-friends, and an amazing network of nursing student friends.

Do you yourself have any diagnoses?

Rheumatoid arthritis, systemic lupus erythematosus, hypothyroid, psoriasis

What are a few of your most memorable moments from your child's life thus far?

Her ability to read. She was a really late talker, walker, sleeper, never crawled, etc. I fully expected her to be delayed and I was ok with that. She blew me away when she completed cognitive testing to discover where she was intellectually. No one expected to see such high results and when she started reading in JK, I was floored. She amazes me. This is the same little girl that could not speak until she was over 3. Wow.

If you could know while you were pregnant, what you know now, what may you have done differently?

Nothing. Maybe request a req form to test my TSH but I didn’t know I had hypothyroiditis!

*Conclusions*

What would you say to parents of children on the spectrum?

If it is a new diagnosis, don’t be scared – this is the same child you carried in your body for 9 months and will continue to be the same child. Nothing has changed, just a name that may have drawn a negative stigma – but your child will be unique and will continue to be your child. Your child is so much more than a word. Autism may be the diagnosis, but it’s not who your child is.

What would you say to adults on the spectrum?

They could probably tell me a thing or two!

Which resources would you recommend?

Be very careful of things you find on the internet. Use wisdom. Evidence-based practice should be your primary source for information and treatment – basically, if you are reading anecdotal stories about treatment, ask yourself – who is writing this, were there at least 100 people in the sample size (1000s are better), are there multiple sources to confirm said information, and does it make sense?

What issues to do with autism are most important to you?

Recognizing early signs and symptoms, early assessment, early interventions, and have more support in the school to integrate children into the mainstream classroom if possible. The classroom is not ASD friendly all the time, but in a perfect world, there would be more support persons available to help with the transition. Having one school in Sudbury with an ASD classroom is not ideal.

Interview with the Community: Part 1 -- Holistic Nutrition

I am starting a series on opening the doors and breaking down the walls within the autism community. All too often, parents, providers, specialists, workers, researchers, advocates, and representatives for the community are unaware of what the 'rest' of the culture looks like. We are all in this together, Most importantly, it is often crucial in order for a child or adult to get better or maintain their achievements, to assess and monitor their lives in a well-rounded manner.. we should never neglect to evaluate natural health, socialization, family life, medical needs, strengths or weaknesses. So here we go, from all around the globe, and all walks of life, those who are making a difference in the lives of someone with autism, are answering the same or similar questions.. Let's open our hearts and minds, to listen.

(( All interviews were conducted through online correspondence, with the clear intention of being posted, unedited to this blog. Sharing of personal information is the choice of the individual, and this blogger is not responsible for any issues that may arise from this.))

*Introduction*

Tell us about yourself!

I am first and foremost a mother of two little ones a 4 year old and 21 month old. I try and spend as much time with them as possible and do about 80% of my work from home to be with them. My husband and I are tackling homeschooling for our first time with our 4 year old and enjoying it as a family. My outlet involves being creative, crocheting, sewing and crafts as well as my addiction to reading.

I am a Certified Natural Health Practitioner and registered under the Canadian Examining Board of Health Care Practitioners.

I have also earned the designations as Certified Herbal Consultant, Certified Holistic Nutritionist and Community Health Adviser.

My education specializes in holistic health, herbalism, nutrition (specialization in vegetarian, sports & fitness nutrition), and environmental science. I have also successfully completed courses to facilitate lactation & smoking cessation.

I volunteer for the Sudbury District Health Unit in the Breast Feeding Companion program.

I am also co-founder of Sudbury Let’s Celebrate Breastfeeding.

Where are you from?

Sudbury, ON

What is your occupation?

Certified Natural Health Practitioner, Certified Herbal Consultant, Certified Holistic Nutritionist & owner of From the Roots Holistic.

What brought you to become active within the autism community?

I have been a child care provider for a few autistic children in the past and have seen the wonders holistic medicine has achieved for them. I myself was diagnosed at 25 years of age with Asperger's Syndrome, my son who is now 4 years of age was unofficially diagnosed as being on the spectrum also and we have and are addressing it holistically.

What do you strive to accomplish for your family and/or the community?

I hope to use my education and knowledge to assist my family and contribute to the ripple effect that is happening in Sudbury in regards to healthy lifestyle practices and a more holistic approach to health.

*Autism*

What services do you provide and how can one access your programs?

I offer various health classes one of which includes a class entitle “Nutritional Support for Children on the Spectrum” that educates parents and caregivers on how to approach Autism from the gut up, teaching them the importance of gut health, foods to avoid and foods to increase.

I also offer various consulting services, my primary service is Holistic Health & Nutritional Consulting where I assess my clients and create a program for them involving nutritional medicine as well as herbalism and other holistic modalities if required…. This is the service that would benefit those on the Spectrum.

One can access my programs by visiting my website www.fromtherootsholistic.ca or calling 705-586-1210.

Could you describe what you do?

In regards to the classes I offer, they are 1-2 hour long power point presentations offered to small groups of 5-10 people either at a set location on set dates where people can register to attend or for private bookings in home, clinics or places of business.

My consulting services require a client assessment so I can find what the clients concerns are pin point imbalances and nutritional issues and create a program that fits that individual and involves nutritional support, herbalism and other holistic medicines if requires.

What growth have you seen in your clients?

I have only been in practice since 2011 and only offered health classes at the time, since 2012 I have been taking clients. The clients I have been seeing have mixed progress and it all correlates to the commitment they make to our partnership. For some the progress is slower as they have a lot to change and the change can be hard especially when they have been practicing a damaging lifestyle for quite some time, for some their previous lifestyle seemed healthy in their opinion. These clients require smaller steps and education. Some clients are used to being given what they think is a magic pill and are now being asked to take responsibility in their own health and that is a major learning curve. For other clients the progress is much more impacting and fast as the client is committed to the program and ready to take responsibility for their own health. For a few the commitment is too much and they stop seeking my guidance or I let them go for ethical reasons.

What are your greatest concerns for the autism community?

I think my major concern is that all the therapies out there do not address the gut and nervous system relationship, in my opinion other therapies should not be started unless this is address then depending on individual needs certain therapies that are appropriate to that child should start if truly required. I also have concern where parents enroll their child in as many programs as possible without looking at the negative impact this can be doing with some therapies possibly negating others, ignoring their child’s individual needs and overwhelming them which will in itself negates these programs.     

calming the hulk

The Hulk. A man one moment, and a fierce beast the next. Triggered by emotions that are overwhelming for the man to bare on his own. I do see why 'D' admires this character. He also mimics behaviours from this personality when he is feeling the same way. It has been an amazing benefit, but only a step in the direction to communication and expression. He is the sort of person who would rather ignore feelings than sort them out, it is quite the challenge for him.

Here are some strategies I have used on a casual introductory, 'feel-them-out' sort of style. Which I will now have together as my sensory toolkit for both my kids, myself, and possible recommendations to others with regulatory challenges.

- aromatherapy: It truly can wake up the senses, not to mention the effects of many commonly used essential oils are therapeutic on their own. 

- music: neither of my kids were all that interested in music, it took time and demonstration for them to tolerate it as a form of entertainment, and still they have selective tastes. I have used my iphone until now for music but not an easy task, worry about the phone dropping amidst the meltdown you're scrambling avoid, no thank you, not anymore. he has his own mp3 player now, and is able to be entertained by small amounts of music, which are chosen based on his preferences, without video, and it is in his control.

- curiosity containers: provided they do have something for the kids to be curious about! if they don't like the colour blue, don't rely on something that has blue one it. we have had toys like this before, but they held their interest for very little before we moved on. Now I am looking into handheld puzzle games that rely on motor control, not electronics. 

- pets: good at receiving and expressing nonverbal compassion, needs, and love. Need I say more?

Personal Maintenance

There is grief, and then there is autistic grief. >>  read the thinking person's guide to autism here

Our family has been undergoing the assessment process all over again, it has been 2 years since the previous one, and as time goes by the more I feel beaten by this system. Where has my confidence gone? Where did my determination and focus evaporate to?

11 things I do to keep myself happy, sensible, and organized.

* practice the same holistic strategies that are encouraged for the children, there is no shame in borrowing the therapeutic brush, trying out the trampoline, or taking your own advice.

* try to laugh at least once a day, and mean it. Let yourself fall victim to humour.

* acknowledge the truth, that you are only human, and things in life have a greater effect on your body's well-being than you think. That artificial shake in the morning? coffee? did you forget to exercise? how many glasses of water did you have today? remind yourself of these things, and it can set you free from emotional upheaval.

* turn anger and frustration into energy for developing a game plan that will work FOR you when you are drained, burnt out, overtired, or busy. I get compliments on how organized my space is, yet all I can think about is how that other 'energized-and-pushed-into-a-corner' self pulled it off. I can wake up in the morning and know where all my plans are, even if I don't follow them, or use them, I know they are there, and they are intended to support me when I feel weak. which brings me to my next point

* above and beyond all else, be your own advocate. In most scenarios its the parents that have to stand for themselves, the child's needs can be emphasized through the rest of the child's autism team. As a parent, you not only have to keep an eye on this team, lead it, and set goals for it as the child's main expert; but you also need to make sure your needs are being acknowledged and respected as a mother.

* love you. nobody else can love you in the ways you can love yourself.

* keep in mind the magic 3 (before you fall into self-blame, interventions, or action):

1. Diet and Nutrition (are you eating right? is your child? how much do you know about your food choices?)
2. Sleep and Energy levels (did you sleep well, did they? when are your peak hours, when are theirs?)
3. Stimulation and Habits (are you an introvert or extrovert? what of your children? has a habit overstayed its welcome)

* sleep. take naps according to your needs

* be flexible. Your time table needs to revolve around your best possible output, incorporate your needs into your schedule.

* entertainment. whether it is video games, tv, movies, working out, cooking, music, use it when you need it, reward yourself, or provide reinforcement for a task well-done. 

* share. find people who share the same dreams, understandings, aspirations and inspirations as you. take from this, strength, compassion, and solidity.

Bullying

When we talk about bullying it is important to remember that no matter what was said or done, all parties are human beings, and all parties are deserving of serious help and intervention. In the case of many bullies, these are children who have been missing out on positive influences in all facets of their lives, or have been on the receiving end of bullying as well and did not get adequate support. Much of the time these children or adults are ignoring emotions that have a daily impact on their well-being, and if these are not dealt with appropriately, they can escape and lash out at the most convenient target. It is very common for people with non-visible conditions and disorders to take this even more personally. Let's take a look at some examples of an individual with a non-visible condition or disorder, fictional characters, and situations.

1. Anne is a 15 year old girl who was diagnosed with asperger's syndrome at 11 years old. She attends a public school and is in a mainstream classroom, but accesses the resource room for special needs support once a day. She may look plain, and keep her grooming and wardrobe simple. She may be bringing the same food every single day. She probably has tics (stims) and tries to hide them as conveniently as possible underneath the guise of milder forms of similar behaviour she has come to accept from her neurotypical peers. She is exhausting herself daily by living within the confines of typical adolescence, and traditional high school. She has few friends, and sees them rarely. When she is ridiculed or her peers notice her odd behaviour, it is more often than not, a toxicity she cannot deal with, a new sensation, one that cannot be discerned as being positive or negative. She may receive the same looks from those who offer her help.

This person is more prone to self-harm due to bullying, others' expectations, and her own pressures. She is more prone to being bullied simply for behaving differently. 

2. Bobby is a 10 year old boy who spends his school days in an alternative classroom with other children who have a diagnosis of autism. At the end of the day, he gets on the same bus as the other students with ASD, and wonders at the other children who take the larger busses, and he has never met. He is likely a very friendly boy when you get to know him, and would love to know how many of those other children share similar interests and pastimes as he and his classmates. He may wonder, why is he not on the same bus as those other children. When he is with his friends and family they are very considerate to his sensitivities, and he is rarely asked to take chances, everything is done for him, his environments are customized to his or his peers' needs, or he has been taught how to handle and contain himself when in these other environments.

This person is more prone to self-harm because of his vulnerability in unpredictable situations, and his reliance on others for much of his day-to-day life. He is more prone to being bullied simply for being different.

Environments, lifestyles, health, and personal wellness are contributors to bullying.

• enforced conditioning to a set standard that has not been analyzed for its suitability to the individual.
• 'cookie cutter' practices and policies. The reasoning of "we know best, you do not"
• imbalanced growth, based on insistence that emotional regulation and development is secondary to motor functions and cognitive traits.
• malnutrition, undiagnosed food issues, sleep, dehydration, stress.

.... I'm sure we could go on and on about what can loan itself to intensely negative outbursts directed to harm another person, but more often than not, the bully's negativity and strength in punishing others, is derived from the same environment, same circumstances as the person being bullied, who consequently is drained from protecting themselves within those environments, while maintaining a stronger sense of who they are. Conversely, the bully is not able to let life flow through them, and attack those who appear to them to be STRONGER. Yes I said stronger. It is not the weak that the bully intimidates, the bully focuses his/her attention on the individual(s) who have a quality that they cannot find within themselves. At the same time, those who are bullied often are unaware of these qualities they possess and therefore are inadvertently at more risk. 

Essentially, unless it is a personal matter, bullying towards a demographic is a learnt behaviour. Whether it is from their environment they are currently in, or have been in, in the past, they probably suffered an unfair treatment, and never successfully expressed it in a meaningful manner to an obvious end, of betterment.

Here are some complementary or alternate strategies that can be implemented without ignoring the intervention plans of the parent, school, or legal system. 

When a person with autism IS the bully:

- First of all, be sure that the individual can express conscious understanding of his or her challenges, disabilities, or significant issues. Offer them these tools and more to uncover a better understanding.

- remind them of where they come from. show them childhood records, let them meet those who have helped them, and have them talk to someone who was there when the child was at their worst.

- let them live without the label. These kids are often quite used to being treated differently, they may be ready for a new experience, way of life, or sense of identity. Take away the boundaries that are there right now.

- Do not become offensive, but do allow yourself to treat them differently, with full expectations of a neurotypical peer of the same age. 

- take a mini-vacation. Remove the person from their current situation, and spend time outdoors, or in activities that bring them peace and tranquility.

- when they are back into their regular environment, remove all supports attached to the 'autism' diagnosis. 

- encourage them make their own decisions about accommodations, be patient, and supportive.

- online self-assessments are available and although they may seem highly informal, if the test-taker falls within the realm of a plausible diagnosis, it is certainly worth taking seriously.

- do not persist in a zero-tolerance for bullying mind frame. Instead insist on them seeking forgiveness from those they are behaving inappropriately towards, focus on righting wrongs, not avoiding them. 

When a person with autism is being BULLIED:

- encourage them to put themselves in the bully's shoes. Support them as they take the inevitable path through what possible characteristics or actions are inviting such a negative reaction. 

- be there for them as they analyze themselves.

- maintain an aura of objectivity, openness, and understanding.

- when this person finds their faults, encourage them to evaluate them in, a) the way they assume they are being judged; b) through their pent up emotions; c) and last but not least, in realistic terms.

There are online support groups for parents, individuals on the spectrum, and everyone in the autism community. explore these, and offer both the bully and the victims the opportunity to explore these and find like-minded or like-hearted people they can be comfortable with. (of course due diligence when dealing with social media, and forums especially for underage people).

The greatest thing that can be done, is to avoid sugar-coating, nobody is perfect, we all have flaws, and yes these flaws can offend other people; on the other's side, don't punish beyond what is already expected to happen.

The bully has suffered an emotional blow and is struggling to find self-acceptance, or has suffered an extrinsic blow to their core beliefs.

The bullied has come to be reminded of their humanity, and needs to come to terms with their differences, and work towards supporting or compensating for those differences in constructive ways.

Correcting the Nervous System

We finally have the support of an occupational therapist (OT) for the little one, well he isn't so little anymore, he is now five years old, by all my estimations he is adapted up to 2 years old for sensory and emotional regulation, somewhere around 3 years old with fine and oral motor skills as well as behaviours, and intellectually he seems typical for his age, if not more.

From the outside in....

This therapist has put her focus on helping us to create a consistent and stable sensory diet, one which is organized and efficient for everyone involved, put simply 'A' is a multisensory seeker with a high level of independence and of course, a good intellect, and motor skills, with poor sleep habits, and a faltering diet (on occasion) he displays hyperactive tendencies, and this can, as you may suspect, create a masterpiece of chaos. Personally, I do find he is quite aware of his needs, and depending on what events are taking place that day (illness, socialization, isolation, appointments, playdates, family activities) he will tend to his sensory needs accordingly, but illness is tough to monitor, he isn't usually a complainer.

Wilbarger Brushing Protocol

You can read more about this and other sensory modulation therapies here.

We were recommended this because it is a highly effective strategy to get a great deal of response from the nervous system (it is a full body approach) and since it is a combined process and even ending in oral tactile technique for those who are able to do so, it could calm him a great deal. My experience thus far has been, when he is dizzy, lazy, lethargic, or in a slump this revitalizes him but also does so in an organized way. Not like giving a child with ADHD coffee, or a sometimes intense dose of B supplements, this helps a child reconnect his self-awareness to his current cognitive state... I guess it would be like saying, bringing his mind and body back to the same frequency from a non-invasive, non-dietary means. I am thrilled to be doing this, as our diet changes are a very slow process, with the help of a classic OT specialist, I am able to implement holistic approaches more effectively (brushing is actually a recommended practice to support the cleanse proposed by our holistic nutritionist, read further for that update.)

From the inside out....

My child is a picky eater.. he also loves his comfort food, and through life's ups and downs, has come to be acquainted with food in many different ways. For instance, he craves oranges during a cold season, he drinks more water, and avoids fried foods. His brother has much of the same traits, but for now my focus is on 'A' because he is more tolerant to trying new foods, and expanding the ones he already enjoys. I also find diet to be less of an issue, but I have never been able to safely take him off gluten until now. Why? because his nervous system is directly tied to his eating habits. If he eats sugar, its responses are instantaneous. If he ingests prescription medication, the first side effects he experiences are those to do with his nervous system, and what is worse, the same can be said for biomedical treatments, supplementation, and organic versus gmo or chemically grown foods. My most informative experience has been taking him from GMOs to organic with his most sensitive foods, and suddenly seeing a complete difference.. for instance, I would comfortably say that grapes are a 'do not buy' food for him but I can certainly clear up constipation with them; however when I tried organic grapes, they caused only a small fraction of the same side effects as the 'regular' variety. I have some thoughts on this, which I will share later.

A recent new friend of mine, is a certified holistic nutritionist, who happens to be diagnosed with asperger's syndrome herself, and her child has similar traits. She has been encouraging me to follow a cleanse diet she has put together after a few interviews and a great deal of background information about my children. She has also openly provided her knowledge from her training and education on what healthy eating REALLY looks like. That being said, my primary task (which has taken me a couple months to even work my head around) is to start the cleanse, it is only for 15 days.. up to 30 days if the child is okay with it. However!! it means no fruit, no sugar, no wheat, no dairy. 

Here's the most recent research I have found about gluten and autism!! 

Doctor recommendations

Months ago now, I participated in a live webinar hosted by AutismOntario. The guest was a developmental pediatrician from Toronto. The most significantly important things I noted from what she said were the following:

- medical treatments showed better results for people with autism in the placebo group.

- the two most effective treatments have shown to be mindful meditation, and cognitive behavioural therapy.

- access what you can, and get what YOUR child needs.

Autism: Talking with the Experts -courtesy of the Toronto Star

So in pursuit of these key intervention strategies, treatments..or lifestyle changes, however a person wishes to address them, here are some tips and ideas I have used in the past, and am currently using to develop these as personal strengths with my children, as well as to benefit from the immediate results they offer.

- when the kids are having trouble following through on a task, I label the obstacles, and with this they are less offended its presence, like naming a demon..it soon leaves. As they come down, I try to describe the task, with how it feels to the touch, what it looks like, etc. If it is a new situation entirely, I remind myself to stay simple, but if it is something they are familiar with, I try to connect them with it in more detail and personalized terms with each encounter. Gradually over time they will do it independently. I find it important to be calm and expectant of their anxiety, and not focused on the task at all but to be self-aware myself and know the environment, being mindful myself, I slowly acquaint them with their environment by helping them give conscious constructive thoughts to their subconscious instincts. In hopes that they will walk themselves through more and more challenges on their own. So far it works.

- when a meltdown hits, we like to call it when 'too much' gets out of control or sensory explosions. Whatever the trigger, (whether its being pulled out of concentration too suddenly, an overload of negative sensory experiences coinciding, or simply mismanagement) I try to provide support directly, maybe a hug, space, turning on sensory goodies, or transitioning to a different task (be it, cognitively challenging, outdoor physical activity, or socially-demanding) as smoothly as possible. In the case of meltdowns that are recurring, and he is resistant to my solutions, I give space immediately, rethink my own strategies (ensuring they are correct, pairing the behaviours with triggers and consequences, eventually finding a simple answer), and intervene immediately with as much confidence and presence in the moment I can muster.

- If he is feeling down, we discuss or commune on the past, whether it was this morning, the latest upset, or a simpler time, I try to connect with them through this process of reflection. If he is feeling too high-strung and anxious, I join him in worrying about the future, what is next? we lost our footing, and now the future is highly uncertain again. We talk about what may happen depending on his behaviour, if he calms down we can have this, if he remains up there, these things may happen. It is different for each child, but to talk out my own reactions, instincts, worries, and concerns, I can also share with them hopes, dreams, loving memories, and smiles. I try to bring them from pain or fear back to joy. When this is successful we sort out what may have caused this sudden mood swing, and show them a different approach, which would likely not bring on such an intensely overpowering sensation. I also try to differentiate between emotion and sensation. Happy and anxious don't have to be on the same level, and can be experienced together..when they are able to see that these things are experiences not how they are emotionally feeling at the time, it gives more logical information for them to process. When they get it, I rarely have to revisit the same catalyst many times.

Dr. Joe Dispenza, author of Evolve your Brain

In practice a few ideas I have in regards to encouraging self-care in this department varies from each individual in the household to the next. We are all familiar with each other's mechanisms and tools, sometimes even sharing in these in an attempt to grow and understand, or the comfort of borrowing somebody else's strategies until you find your own.

I love to pair vestibular challenges with new phases of working through anxieties, and mindfulness practices with 'D'. His level of caution in life and lower activity levels due to too many 'can'ts' and 'too much's make things like this wobble deck a great place to start. Right now we use an hourglass and the picture window, to keep him in the moment and something to focus on outside of himself, literally. His job is to try and stay still for however long the hourglass runs for, usually one to three minutes. When he is distracted or giggly, he takes deep breaths and continues on, trying not to tip it! 

Diggin Wobble Deck

With 'A' it is a different story altogether. He is quite active and his response to unpleasant sensory input is to be even more active. Sometimes struggles dealing with noise pollution can be quite a bit to deal with in an urban center of any size. He likes to create music, in many different ways. When I work with him to calm him down or to talk to a more centered version of him, we dance, sing, or play gymnastic games. More often than not, nowadays its about providing him the right musical tools for him to find his own auditory pleasure.

Assemblage 23 - Ground

Next in this area: working on the skill of attention.

you have a diagnosis!

1. take a deep breath. 
2. pick a goal, for him and you. 
3. pick a goal, for school or therapy 
4. pick a goal for daily living. 
5. pick a goal for social skills. 
6. slow down and take notes (mental or paper) on how he is in each of these 5 goals. what are his obstacles, and why. 
7. isolate the sensory and motor issues from the typical child developmental issues. 
8. AIM << go there and find a solution, you can learn any individualized approach in about 5 minutes, and some trial and error with your child. 
9. write out your goals, what you know he does need support in, any tools, resources, and services you want access to.. bring this with you to the doctor. 
10. don't be afraid to ask about money, most publicly funded services are not beneficial enough to warrant the side effects they may cause to your family or your child's life. 
11. look into cognitive behavioural therapy, and mindful meditation practices. 
12. evaluate his overall health and consult the best nutritionist you can find.

I have been following this strategy since my oldest was 16 months old. The greatest advice I ever had was from our first speech language pathologist, Lisa. She was brand new to the world of autism, having only taken her first few extra courses and workshops for her specific trade and interacting with children on the spectrum.

These twelve principles fall in line with her advice. My children have yet to receive intensive interventions, strict ABA or anything outside of myself. 'D' did attend public school in a contained classroom environment segregating the autistic children from the neurotypical children. This proved to be in his case, detrimental, when I decided to homeschool we had to re-instill all of his social skills, daily living skills, self-regulatory skills, and self-awareness development that he had prior to school. 

Here's how I try to keep track of it all.

1) I avoid tracking sheets and in-their-face clinical practices.
2) block out everything but your child in the moment, following floortime and DIR practices here, weighing his cognitive responses to my interruptions, and adaptations of routines (ie.. doing for him, or offering help, and letting him lead me into how or what he wanted to do)
3) breathe in those moments of togetherness, and keep them all. Find them anywhere and everywhere you can, from bedtime routines to grocery shopping. If you can be close to his apparent thoughts, you can learn what his sensory triggers are before something happens.
4) measure by frequency and stress levels.. sure taking mental notes isn't the most efficient way of doing things, but truly most services only encourage you to focus on one goal at a time, no harm in monitoring your others along the way.. in my opinion.
5) combine your goals with any therapists or specialists' goals, and insist they listen to yours and include you in their decision making.
6) mimic the desired outcome in other ways. Ever heard of play therapy? I like to take a serious challenge and use play to discover whether they have the dexterity, strength, focus, and self-awareness to complete the task, if they do, I find a developmentally non-threatening play thing to encourage the action, and through pairing verbal cues, visuals, or even similarly-tactile transition tools, they develop the skills independently, leaving you to focus on how to achieve the goals set out by the specialists who are supporting YOU.
7) keep track of the tools you are using, the developmental ages associated with them, and follow the criteria for developmental assessments used by your local family services young children departments. You will quickly find you have the knowledge of your child's ability, demonstrate intuitive reactions to your child's needs, and have labels you can share with your team that is understandable by most if not all.
8) last but not least, I monitor stims.. I really distress when they would normally be removed from their activity by others, because it is usually a seemingly traumatic and triggering scene to the child.. through trial and error (mostly indirectly if possible in this case) sort out what the possible goals are of the activity, and how you can expand on it with/for them. With this it does help to have aspergers, or a strong understanding of the child, or of stimming in general. For the sake of relieving social awkwardness, I do strongly encourage to find near-to or popular alternatives to their stimming when in social scenarios. What I mean is this, when indirectly encouraging the stimming behaviour, focus on functionality. ALWAYS remember you want the play to at least seem functional to others. I follow this rule to this day, and it works. On good days my kids appear high functioning autism, and most stims have been masked with socially appropriate alternatives, wherein they feel the freedom and confidence to interact with neurotypical individuals, or strangers.. without the loss of what they find to be 'centering'. 
9) always learn what others see and feel about your child's behaviour, accept comparisons, and bear with the disappointments and bad days in between.. you will find support in even the most unlikely of places, by being honest and hard-working in this. 
10) when life gets in the way take a break, because if these things work for you, and your child has had plenty of 'stimming' time, it is very likely he will bounce back two-fold and show you what he has taught himself when you were mentally 'away'.

So your child is being assessed for autism

be afraid, very afraid!

As soon as you start down this road, you will be faced with a series of nightmares. Will your child be ridiculed in school? how will this impact his relationships with peers and siblings? Will your life ever be the same again? All of the rules you had dreamed of, or live by, are crumbling! We need help to build these 4 walls back up again. Your child needs therapy. Your child needs intensive intervention. You need to be prepared to lose yourself to the machine of forms, charts, checklists, data collection and paperwork.

If your child is already sick, you may begin to wonder what more this will add to his and your plates. What IS autism?! Why us?! The series of concerned yet hollow faces you will see over the years begin to haunt you already. In public you may be doing alright with social perceptions if your child is young, but as they get older..? When a tantrum over a toy is no longer cute..? what will you do..? How much can ABA really change this..?

In 2013, Canadian statistics are at 1 in 88 people are diagnosed with autism. If you do not have a business-inclined mentality, then please take a moment to breathe that in, and abruptly make a horse sound and spit it out again. It means nothing for you. Is your child part of that number? who knows. Where did all these kids come from? well, either its something in the water, food, or lifestyle; or maybe its just a new craze. What does all of this mean for YOU? How other children are doing in school will be very different than yours, I assure you. What services other children receive, and how effective they are, is purely subjective and circumstantial. What are YOUR goals? How does autism interfere with those? What can you do to bring the two together? Because you see, I don't think autism interrupts our hopes or dreams, I think how we learn to deal with differences, this is what changes our reality.

The scariest part of your child being diagnosed with autism, is that you are slowly and methodically given the option to let your child be segregated from neurotypical peers, or to pull the plug on your own dependency on the social construct that is the popular culture.

Personally, henceforth, you will read of how I choose to pursue integration, not in school, not in extracurricular activities, but true integration. If we are at 1 in 88 individuals on the autism spectrum, then a few years ago we were at 1 in 100, a few years before, 1 in a few hundred, there has always been autism, and aspergers, but never before has there been such a rush for fundraising to prove a cure, therapy, or intervention like there is now. Be wary of any sponsored ads or specialists.

Right now, my greatest fear is really whether my child likes dinner tonight or not, what's yours?