New Beginning

Hello there!
We have been away from this blog for far too long.. honestly amongst everything else I am working on (virtual groups for homeschoolers and for families with autism) I lost track and I lost account information. So, in assuming you have accepted my sincerest apologies (*wink *wink) I would like to introduce a series of med-free, and gentle-teaching methods and tools to help our kids young and old, get through the day more easily. Stay tuned!

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.