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.