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.