It’s All Geek to me: ifun with function 26/5/11 By Carla D Oldham BS I touched down at the rainy cold windy city at 8.30am. Checked into the hotel by 10 am. Just chucked my bag in the room and … Continue reading
Category Archives: ABA
10 Valuable Lessons For Autism Parents: A Journey Of Grace And Dignity
Featured
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I am a mother of 2 children who are now recovered from autism. In my journey of healing and recovering them, I learnt that anything is possible. As a mother and autism advocate, I share with you some valuable lessons I learnt in my journey.
When both my daughters were diagnosed with autism, in the midst of my grief, I had to pick myself up and figure out a way to help my children. What do I do, where do I go, how do I start? For families who have just received the autism diagnosis, believe in HOPE. Without hope, you have already lost the fight before you’ve even begun. Always believe that our children can improve and even recover.
1. Attitude is everything
How you respond to something will determine your outcome. If you choose to walk down this path full of fear, anger, hate, scepticism, negativity, sorrow, or jealousy, expect to receive the same in return.
The first few months after my daughter received the autism diagnosis, I lived in a life ruled by fear. Fear of the future, fear of the unknown, fear of taking risks, fear of making the wrong decisions, fear of whether I can do what it takes to help my child. A life led by fear is not healthy. It also stops you from moving forward. It was a lonely, scary journey.
I realised that this is not helping my child at all. The fear is still there, it will never go away I think. However, the difference is, I no longer let the fear stop me from doing what is best for my child.
You’ve probably heard of the law of attraction. The philosophy of ‘like attracts like’ is extremely powerful. If you have a lousy attitude, chances are, no one is clamouring to help you and your child. More often than not, you will meet resistance and hostility.
Reset your attitude, you will be surprised to how much more you will receive in return. There is an infinite amount of love, hope and positivity in the universe. You just have to reset your frequency to tune in to that positive abundance.
2. Fill your space with positivity
Surround yourself with positive, supportive and encouraging people. These are the ones who will stay with you along the way and cheer you on. Don’t waste your precious time and energy on negative people who will only hold you back and make you feel worthless. They will drag you down instead of helping you up.
To the ones who make you angry or say hurtful things, just smile and walk away. Don’t scream at others. Screaming doesn’t help the situation, it only makes things worse. If you have done wrong, apologise.
Fighting only zaps your energy. Don’t fight in front of your children, they can hear you and remember what you said. Autistic children are not deaf. Don’t forget to hug and kiss your child. Even if you think they’re not listening, always tell them how proud you are of them. Love them and kiss them everyday, this is better than any therapy or medication. Don’t forget to surround your child’s space with positivity too. They need it.
Always treat your therapists, service providers and medical professionals with respect. They are there to help your child. Always pay them on time. Consistently paying them late is a sign of disrespect and lack of character on your part. Being rude or mean to them is just cultivating negative emotions. Surely you don’t want your child to be treated or taught by people full of anger and resentment right?
Choose hope and positivity. Expect this to be a journey full of challenges and pitfalls. But also expect pleasant surprises and wonderful progress. Autism never stops, it never takes a day off, it never gives us a break. Our children live in autism 24 hours a day. Always treat our children with kindness and respect, we can only guess how it feels to live in their bodies.
Trust me, it’s easier and happier to travel this journey when you fill your inner space with positivity and surround yourself with the right people.
3. You are what you eat!
Clean up your child’s diet immediately and focus on healthy, nutrient-dense foods. My daughter responded positively to the GFCF diet. Within the first week of the diet, she spoke her first word!
I went gluten-free, casein-free, soy-free and egg-free. Omit all gluten (wheat, oats, rye, barley) and casein (cow and goat milk-based products, milk, yoghurt, cheese, butter) I stopped soy too because soy’s biochemical properties are very similar to casein, plus majority of autism kids test very high intolerance to soy. Most ASD kids also have very high intolerance, if not allergies, to eggs.
Incorporate nutrient dense foods in your family’s diet. Go organic and GMO-free if possible. Choose grass-fed, free-range, antibiotic-free meats. Very important to reduce or stop processed, packaged foods and drinks that contains preservatives, colorings, flavorings, artificial sweetener, caffeine. Stay away from sugar and high fructose corn syrup. These really affect our kids and behavior!
Do the diet 100%. Yes, there are other kids eating junk food and bread in front of your child. Your child WILL try to eat forbidden foods. Yes, other family members don’t want to follow the diet. Yes, grandparents will smuggle a bit of ice cream in. There will be transgressions, it happens. Start the diet again. Find a way to make it work. Eventually, the diet becomes 2nd nature.
4. Autism is medical
Many children with autism suffer from gastrointestinal issues, oxidative stress, nutritional deficiencies, immune dysregulation, inflammation, allergies, chronic infections, and disorders resulting from environmental toxins.
Treat the underlying medical illness, a healthy body means a healthy mind. If your child has chronic constipation, diarrhea, unable to eat, frequent infections and illness, do not make autism an excuse not to treat your child. Not everything in autism is behavioral, some are medical conditions that needs medical treatment. Every child deserves good health, autism or not. Everyone deserves good health and medical treatment during illness, whether they are young or old.
Make an appointment with a biomedical doctor. They will help you address the underlying medical issues that are common in our children. Click here for Biomed Doctors. There are other treatments that are highly beneficial for children with autism and ADHD, including homeopathy, osteopathy, cranial sacral therapy, essential oils, to name a few. Please consult with a medical doctor or a healthcare professional to manage your child’s treatment.
5. Finding the right therapy and school
There are many types of therapies that are beneficial for our kids. In my opinion, any therapy you choose should be intensive, consistent, preferably 1 on 1 therapy. For many children who are new to diagnosis, larger student to teacher ratio may not be suitable initially. It is important to invest in a good quality therapy or therapies that are consistent, frequent and conducted by trained professionals. Choose therapies that are targeted at addressing your child’s needs. The therapy should adapt to suit your child, not the other way round.
Remember, early intervention is key! I did 1:1 ABA therapy (Applied Behavior Analysis) for my daughter, and I can’t recommend it enough. When she was first diagnosed, I did home based ABA, 15 hours of therapy a week. By the time she was 3 years old, I changed to centre-based ABA, with 30 hours a week of therapy. That made a HUGE difference in her progress. There are pros for home-based as well as centre-based therapy. Ultimately, I chose centre-based therapy as there were many more benefits compared to home-based therapy for my daughter.
Doing home-based therapy was fine for a while, but after some time, I found many aspects of her development were not addressed enough if I kept her home all the time. Centre-based therapy helped with social-skills, generalisation, flexibility and also is a gentle transition to a mainstream school environment. Also, on the plus side, she had access to many more variety of toys, reinforcers and games at the school. And there were lots of therapists and other children there to play with.
I am the co-founder of Brightstars, it is a holistic school for children with autism, ADHD and learning challenges. I set up the school with my 2 good friends who are also mothers of children with autism. We have always dreamt of a school that had all the best therapies and programs that we felt were most beneficial to special-needs school. We dreamt of a school that focuses on quality rather than quantity. A school with a 1 to 1 student to therapist ratio. A school filled with the best, brightest and most compassionate therapists ever. A school that was sensory-friendly, quiet and calm. Most kids with autism find noisy and busy schools a sensory nightmare. So we put great thought in the design of the school. I wanted a school that was comfortable, friendly and fun. Most importantly, I wanted a school where each child can reach their fullest potential.
Brightstars incorporates a comprehensive curriculum with a 1 to 1 student to therapist ratio. Each child receives an individual education plan (IEP), ABA therapy, occupational therapy, sensory integration therapy, music therapy, Autism Movement Therapy, social skills playgroup, school readiness program, and more! To find out more about Brightstars – Life Skills For Exceptional Kids click here www.brightstars.my
6. Get connected
Get connected, get educated, start surfing – join the KL Biomed FB Group to connect with other parents who are doing nutritional approach, biomedical treatments and various therapies. Don’t forget to check out The Thinking Moms’ Revolution and connect with them on Facebook. Get acquainted with other parents, they will be your main source of support on this often long and lonely journey.
Remember, you are not alone.
7. Take care of yourself
Take care of your physical, mental and emotional health. Don’t be afraid to ask for help. Don’t forget to eat well, get enough sleep, exercise and eat healthy. By taking care of my health, I was more equipped to handle the stress and rigours of special-needs parenting. I could do more for my child when I myself was healthy.
Don’t forget to nourish your soul- go for a massage, go to a salon for a hair wash, go for a swim, go to the cinema, walk in the park, have an afternoon nap or go for a coffee with a friend. Try to do something just for yourself once a week. Without you, you child will not improve.
I take supplements, eat healthy, try to exercise and I make personal time for myself regularly. I feel all the better to face the challenges that autism throws at me everyday. Not everyone will have the resources to afford this, not everyone is blessed with helpful family members or friends who can share the burden and give us the break we need. As far as autism parents go, I am extremely lucky indeed and I count my blessings. Manage your resources wisely, however little we may have.
It is hard to strive for recovery when the mum is in deep depression and under extreme stress, the goalpost seems further away when we feel bleak, dejected and pessimistic.
If you are married, take care of your relationship. You are not the only one grieving, your spouse is too. Along the way, you will lose your sense of humour. Try to regain that, you will need it. Have patience. Learn to forgive.
Don’t forget to pray. Only pray for good things. Worrying is praying for bad things. So, pray for good things. Set realistic goals. Give yourself small challenges. Don’t sweat the small stuff, look at the big picture. Celebrate the victories, small or big. Mourn the losses, but pick yourself up and keep going to the next level.
8. Focus on what you CAN do, not what you CAN’T do
I always tell parents to focus on what they can do. Don’t focus on the things that you cannot do. Focusing on the things that you don’t have, can’t do, can’t afford etc, is a waste of time and energy. Instead, put your energy into the positive actions that you can do TODAY.
9. Set realistic expectations
Be realistic in your expectations. There is no miracle cure, no magic pill, no one size fits all when it comes to autism. It takes hard work, perseverance and TIME for our kids to improve. Expecting a child with 3 years worth of speech delays, behavioural issues and sensory disorders to improve drastically within just 6 months of therapy and treatment is unrealistic. You cannot catch up with years of delays in just a few short months. Anyone who promises you miracles cures or instant results, be wary.
Think big, aim high. Don’t underestimate your special child, you might just be pleasantly surprised. Don’t let anybody hold you or your child back.
10. Forgive yourself
It is not your fault. Your child’s autism was not caused by bad parenting. Blaming yourself only brings you down. Ultimately, you need to move on. Don’t waste your time on guilt, it is counter-productive. It’s not helping your child.
Remember to go through this journey with grace and dignity. Our children are voiceless, it is up to us to speak up for them. Don’t forget why we do this, out of love for our children. A smile goes a long way, a thank you even longer. Don’t forget those who have helped you along the way, pay it forward in the hopes that you too can help the next new parent that comes your way.
~ Marissa aka Spectrum Mum
>Survivor, Not Victim
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A parent had recently asked me if I was scared, she had written to me with such stark honesty about her fears and desperation. She wrote of her life, her child and how twisted her world had become. I can still remember living in a twisted world and I’m sure I have scared off a lot of friends and alienated many people around me with the intensity of my pain. Though I got a lot of sage advice, I was deaf to it because of the roaring of the pain in my soul.
To most people, listening to an Autism Mum can be quite challenging. It is hard for most people to truly understand what life is like with a child with Autism, most think that it’s like the movie Rainman or what is commonly yet wrongly portrayed in TV as what Autism is. For a lot of us Autism Mums, we learn the hard way not to talk about it with most people, otherwise you end up alienating yourself and lose friends. How often can a friend or even family members listen to you about the stimming, the spinning, the lack of speech, the poop smearing, the obsession to lick every single thing or the bad nights that the mum has had? The ASD symptoms can be quite bewildering to non-ASD parents, most of them don’t understand why we obsess over the seemingly small things. So what’s the big deal about lining up toys, waking up singing in the middle of the night, climbing on the television, biting the teacher, spinning in circles, lack of cooperation or speech that is slow to come? What’s the big deal about a child’s constant drooling, lack of eye contact, repeatedly tapping on the walls or standing upside down? No one wants to hear about the insane screaming and tantrums that used to go on in my home (except maybe you guys who are reading this!) When I talk about the meltdowns and anxiety, the picky eating and the non-compliance, usually I get blank looks or condescending remarks on better parenting.
My friend had poured out her soul into her email and wondered why I hadn’t replied to her. I finally wrote back and apologised, explaining that both my girls were ill and so was I, thus the late reply. I also wrote “You asked me before if you scared me; I have been in situations a lot scarier. I don’t scare easily.”
As a parent with a child with Autism, you would understand what those scary moments are. I have been scared when my daughter would bang her head so hard against the floor that I thought her skull would break. I remember the fear when I heard Maya laughing insanely in the dark at 3 o’clock in the morning. I have let fear stop me from getting treatment for my child. I have been afraid of being left alone with her because I was not able to control her. I was scared of taking her out in public because she would scream so loudly as if she was being tortured that everyone would stare. After what my family and I have been through, an emotional email from a distraught mum doesn’t scare me. I have seen fear in my childrens’ eyes; that’s when I knew that just because Mummy is scared, it doesn’t mean that Mummy doesn’t have the courage to keep fighting for her baby.
I am guilty of holding my child back, for fear of her failing. But if I never allow Maya to be challenged, how will she ever learn and grow? The future was full of unknown fears, because Autism has such a bleak prognosis, I didn’t know how I should plan our future. Leaving her in a room with a therapist was difficult, so was letting her go to school for the first time.
Doing the first blood draw was so traumatizing for Maya and us that it actually stopped us from pursuing biomedical treatments further. I was scared that doing biomed would require us to do more blood tests, the memory of that first blood draw still brings shivers through Paul and I. It took 6 people to hold Maya down, drop after drop of blood was squeezed out of her arm. Vials and vials of precious blood, to the sound of Maya’s horrific screaming. I swore to never let her go through that again.
Ironically, that horrific blood draw was not even for Biomed, it was actually for mainstream medical screening tests. The worst thing was, all those tests came back negative or inconclusive. The doctor didn’t find anything “wrong”, there were no treatments to follow up with except some vague remarks about giving cod liver oil. All that trauma for nothing, it imbedded a deep mistrust in the medical profession in me for a long time.
I kept making excuses and delaying to see a DAN doctor for several months. We’ll see the DAN doctor when…… her ABA program is well under way, when she gets over this cold, when she’s healthy, when she is more compliant, when she can listen to us and not meltdown when we travel with her etc. Then when both girls were hospitalized for Rotavirus, it suddenly hit me that if I were to wait to travel to see a Biomed doctor only when Maya was healthier or when she was more manageable, it will never happen. She was having colds, flu, fever, coughs and tummy aches constantly. She was still non-compliant, there were still epic tantrums and meltdowns whenever she wasn’t doing ABA. There were very few moments when it was convenient for us to take time off to travel to the doctor. There were always important ABA programs that we couldn’t take time off from, there will always be chores and meetings. There was never a perfect time to travel, there were always other commitments that took precedent. It was a lightbulb moment for me, I really understood then that my child was sick. She will not get healthier nor will her behaviour improve until I get her treated. I finally understood that taking care of her underlying medical health should be our foremost priority.
I finally got up my courage to take that step and make an appointment with a real DAN doctor, someone who was listed in the ARI website. 6 months of wasted time, only doing ABA and not doing anything about her medical health. I finally realised that I was scared of the blood draw, that this fear was holding my daughter back from getting the medical treatment she needs. That fear held us back for so long, that when we finally met our first and then our 2nd Biomed doctor, I felt so foolish. Because the fear that I was so afraid of was unwarranted. There were no blood draws involved! Only a prick on the finger for a blood spot.
Months later, we were required to do blood draws for certain tests as we were doing more and more complex treatments. However, we took it all in stride. Sure, it was difficult and painful to go through. But we realise that Maya got over it much quicker than we did, it was foolish of us to hang on to that fear when the pain has already worn off long ago. We just did another round of blood tests a few days ago. Maya cried, Paul went a little pale and I got choked up when I saw Maya’s blood spurting out of her vein. But we got over it. We know that in order to ensure that we do all these treatments as safely as possible, we do need to go through a blood test once in a while. A small amount of pain now, for a lifetime of happiness right?
This morning, I was sitting in the lobby of a dance school, waiting while Maya is having her ballet lesson. She has been pleading with us for months to go to ballet class, but I always held back because I felt that she was not ready for it. After some time, we finally took Maya in for a class. As always,
whenever we felt that we were pushing her over her limit or demanding too much from her, she always exceeded our expectations. Again and again, she has shown us how high she can soar. I am in awe of this beautiful daughter of mine, her heart is so big, her strength and courage puts me to shame. And yet, I still tend to hold her back for fear of failure. Whether it’s hers or mine, I’m not sure.
She did so amazingly well, in a class of a dozen little girls in identical pink tutus, you would not see her any differently from the other ballerinas. Except for her huge smile and graceful arabesques. She has had several classes and her enthusiasm and love for dancing is apparent. She pays attention and obeys everything the dance teacher says, points her toes and follows all the moves. She is dancing in a group with other tiny adorable ballerinas, stretching on the barre bars and standing at first position like a prima ballerina. I was surrounded by other mums who, though proud of their little girls, seem to take it for granted that their girls are fine. I’m so freaking proud of Maya that I had to stop grinning like a fool in the lobby, my heart is so full of pride for her I feel it would burst. They are chatting about family vacations and private schools, while I still can’t let go of the grip of Autism just yet.
In the first few months after Maya’s diagnosis, the fears and the tendency to hold Maya back was turning me into an Autism Victim. When I discovered that about myself, I swore not to be a victim, that my daughter and my family will not be a victim to Autism. Instead, together we took the journey to be Autism Survivors. Sometimes we need to go through a war in order to survive. Though the war on Autism is over in our home, we still feel like we’re living in a war-torn zone. It will take time to rebuild this family, though we are well on our way. It will take even longer to recover financially, though our initial investment has multiplied ten-fold in other ways. We have kicked the enemy’s ass and regained our country. We are no longer Autism Victims, we are now Autism Survivors.
>Favorite Subjects at School
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We are gradually transitioning Maya into a mainstream kindergarten for the past 2 weeks. Together with a shadow, we started Maya for 1 hour a day every day at the new school. Meanwhile, Maya still gets at least 5 hours of intensive ABA everyday. She immediately liked her new teacher and she has enjoyed every new experience. So far, she has done a science experiment, a music and dance class, a speech and drama session, learnt Mandarin in school and gone on a field trip with her classmates.
In the past 1 week, Maya has mastered writing her name, day and date on top of her worksheet. Maya has learnt to write her name a long time ago, but she only learnt the days of the week and month only a few weeks ago with ABA. She learnt the names of the day and month, but she has never learnt how to write it down. We have not taught her how to write numbers either. Initially, she needed a bit of prompting writing down the date, but once she learnt how to look at the blackboard and copy the words and numbers down, she is doing well.
Writing is a difficult task for her, her fine motor skills are still something we are working on. She surprised me a few days ago when I asked her what day it is. She said “Today is Thursday” and I asked her to write down the word. There was no prompting or visual guide, yet Maya was able to write and spell it correctly. We are also working on reading during ABA, she can sight-read quite a few words already, mostly 3-4 letter words.
She communicates well with all her teachers and happily takes part in all the activities. She interacts well with the other kids but she has yet to make a best friend in class. She raises her hands to answer questions and always gets the answers right. She loves going to the school library and borrowing a book. Maya is compliant with wearing the school uniform and socks everyday, even the PE uniform which is a round neck white tshirt and plain red shorts. As you may know, this is not an outfit that Maya would ordinarily want to wear.
Last week was Maya’s first exposure to science and she learnt about soluble materials. She listened to the teacher’s instructions and carefully did her experiment without any help from the shadow aide. She was extremely excited and told me all about it after school “Mummy, I made a soluble!”
Maya has always loved music and dancing, but as this was her first time with a new music teacher I was naturally apprehensive. There were also more children there, the acoustics of the room was louder and more echoey and the format was different. I peeked in and saw Maya happily joining in on the fun, dancing around the room with the other kids, waving a handkerchief on a stick in time to the music. Later on in the car, Maya said to me “I did a handkerchief dance, Mum! The music teacher’s name is Ms ****”
The school had organized a field trip for Maya’s class to the fire-station. We were keen on Maya joining in all the activities and our ABA team helped prepare Maya for this big adventure. As much as I wanted to expose Maya to the real world, I was still apprehensive about the school trip. She had never been anywhere without us before apart from with her grandparents. She would be going on a big schoolbus with 25 other kids. Even though she will be accompanied by her shadow aide, I worry about the strange environment, the many kids and the fact that Maya had never been on a bus before. Also, she has had a lifelong fear of men, we were not sure how Maya will react to the firemen.
We were told that Maya really enjoyed the bus ride and the singing with the other kids. She made immediate friends with other girls that were in the other class (same age group, but different class). She listened carefully to the fire safety lecture by the fireman and watched a demonstration of the fire extinguisher. She did not want to climb on the fire truck but most of the girls didn’t, mostly the boys did this. She didn’t want to try on the fire helmet either, but neither would I, who knows how many sweaty smelly heads it’s been on!
When the firemen demonstrated how they slide down the pole, she told one of the fireman to do it again! And she also tried out the water hose with a little bit of help from the friendly fireman. It was hot, noisy and strange and my daughter took it all in stride. Not only did she conduct herself well, she also enjoyed herself. It was a big big milestone for us, words cannot express how proud we are of Maya.
Today, we extended the school time to 2 hours. It was her first time with a new subject, Mandarin. The school has a multi-lingual curriculum, English is the primary language however there is a Mandarin class every day. There are always 2 teachers in the class, one who speaks and teaches in English and another teacher who only speaks in Mandarin. However, for students whose parents do not wish to emphasize on Mandarin language skills, the school has a more relaxed policy for those kids.
There is also a Bahasa Malaysia class 3 times a week, but we will introduce Maya to that a little bit later as the time of the class is not suitable right now. A year ago, Maya could barely even speak English, now we’re introducing her to a 2nd language and soon a 3rd language! Even though Maya is half-Malay, I have never spoken to her in my mother tongue. Unfortunately, due to her language delays, it was better that we only speak in one language so as not to make it harder for her to learn how to speak.
However, because we live in a multi-cultural city, Maya has been exposed to many languages. She hears me talking in Malay to my parents, our maid speaks Filipino to her friends, we hear Chinese and Tamil spoken on the street every day. One of the many joys of living in multi-lingual Malaysia, many of us speak 2nd and 3rd languages. So I assume that she won’t be fazed by a strange language. Right enough, Maya really enjoyed Mandarin class. She has excellent intonation and could pronounce all the words really well, said her teacher.
Our immediate goals now will be to extend her school hours till she is able to attend the full session everyday. And gradually we will phase out the shadow aide. Our ABA team has done a wonderful job preparing Maya for this big transition. They continue to support us daily by brushing up on skills that Maya has never been taught before yet are essential in a typical school environment. A comprehensive ABA program combined with intensive biomedical treatments have brought us here, we are closer and closer to recovery every day. For a child who was diagnosed with Autism 1.5 years ago, Maya is definitely proof that Autism is Treatable. There is always hope of recovery.
In Speech and Drama class last week, all the kids made a little speech about what they did during the holidays. Maya listened carefully to all the other kids’ stories and listened to the teacher’s instructions. Her shadow aide did not prompt or assist Maya in her speech, all she told Maya was that soon it will be her turn to make a speech. When it was Maya’s turn, Maya talked about our holiday in Sabah, how we all played and swam in the pool and when we saw the orangutans! It was all unprompted and completely accurate. Her class teacher, the drama teacher and the shadow aide were there and they were amazed by how eloquent Maya was.
Later that day, Maya told me “I made a speech today, Mum! Ms Lizzie is my favorite teacher!” We went to Sabah in December, 2 months ago. It was gratifying to know that the effort and cost of going on family holidays was memorable to our little girl. I pray that she has many h
appy memories stored away in her mind, hopefully one day she will tell us all about it. I hope we will continue to fill her memories with good ones, may the bad ones be long forgotten in her mind.
appy memories stored away in her mind, hopefully one day she will tell us all about it. I hope we will continue to fill her memories with good ones, may the bad ones be long forgotten in her mind.
>ATEC Score
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The Autism Treatment Evaluation Checklist (ATEC) was designed for parents, therapists and doctors to evaluate a child’s response to a treatment. It is also commonly used by parents as a tool to track the progress of their child.
I have done this several times for Maya. This was a good way to track Maya’s progress, it gave me actual scores of where Maya was at that moment. The tests scores can range from 0 to 180. The higher the score, the more impaired the subject. A score of 0 indicates a child who is indistinguishable from other neuro-typical children. If you are concerned about the accuracy of the scoring, you may choose to have others such as therapists, spouse or someone close to the child do the ATEC. You can then compare the scores.
The ATEC is not meant as a diagnostic tool. In order to do a comprehensive assessment and obtain a diagnosis for your child, please contact a healthcare professional. You may do the ATEC evaluation online at http://www.autism.com/ari/atec/atec-online.htm
Maya’s ATEC scores was 100 in February 09, 35 in July 09 and 25 in December 09. Both Paul and I did this separately and we both came up to pretty much the same score. Please see below for Maya’s ATEC scores;
|
ATEC |
Feb 09 |
Jul 09 |
Dec 09 |
|
Speech / Language / Communication |
15 |
n/a |
0 |
|
Sociability
|
22 |
n/a |
3 |
|
Sensory / Cognitive Awareness |
22 |
n/a |
2 |
|
Health / Physical /
Behavior |
41
|
n/a |
20 |
|
Total |
100 |
35 |
25 |
I am overjoyed at the scores. We will continue with biomedical treatments and ABA. However, early next year we will place Maya in a typical kindergarden with a shadow. She will gradually increase her attendance from part-time to full-time. We hope that Maya will integrate well and will no longer need a shadow. How long we will need to continue with ABA remains to be seen.
From 100 down to 25 within 10 months is amazing indeed. Today, Maya is a much happier and joyful girl compared to last year. Who knows what next year will bring, but I’m sure Maya will continue and progress. We’re on the road to Recovery. She is my Warrior Princess.
>The Year That Was…..
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Coming up to the new year, I get very introspective of the past events in this last 12 months. Instead of coming up with new year’s resolutions, I choose to remember the highlights and achievements of 2009.
1 week ago, we went to a little girl’s birthday party. Previously, Maya had the most intense fear of birthday candles. Birthday parties were always a nightmare, she would cry and scream at the crowds. Whether it’s her own birthday or going to other children’s birthday parties. Previously, Maya had never blown out the candles on her own birthday cake, ever. Last week, for the very first time in her life, she blew out the candles on the cake on behalf of the birthday girl.
Last year, Maya couldn’t even make a simple 1 word request. She would instead cry or tantrum and we would have to figure out what it was she wanted. The progress in 2008 was very slow. She eventually managed to make 2 word requests. “More milk”, “Chocolate cookies” and “Daddy fix” by the end of last year. However, this year, her language and communication skills have made a huge leap. She can now talk in 9 word sentences. She can talk in 3 back to back sentences. And she has proper chats with us with back and forth conversation. Her pronounciation and articulation is at the level of a 7 year old. She can articulate her needs and feelings at age appropriate level. She made 1 1/2 years progress in speech within 7 months, her therapists, doctors and us are all amazed.
She has lost many of the stims and behaviors typically seen when she was initially diagnosed with Autism. She no longer walks on tip toes, the echolalia has stopped and she has very few tantrums. She is now able to tolerate loud noises and strange places. There is less fear of strangers and she is able to play with other children. We can take her to other people’s houses or to social events without her having a complete meltdown. She is able to concentrate and finish a task. She is no longer hyperactive. When going out, she doesn’t run away but stays close to me. Some of the behaviors relating to sensory processing issues have reduced, she no longer mouths and lick objects. She can also tolerate loud noises such as a busy airport or the sound of construction work.
Maya’s sweet nature is now showing through. She is very polite and has beautiful manners. She says please and thank you and is very affectionate. Maya is gentle and caring. She can now have short conversations on the telephone. She can grip a pencil properly now and able to make age appropriate drawings. She is currently learning how to write the alphabet and learning to read. She can spell and write her name. She can count to 100. She learnt how to drink from a straw 4 months ago and is now able to feed herself with a spoon. She can now hold a cup and drink by herself without spilling it. We finally managed to toilet train her when she turned 4 years old. And she requests nicely to go to the bathroom and so far has only had 2 accidents. After a life-long phobia, she can now tolerate taking medicine from a syringe.
She has learnt how to play simple games on the computer and able to use the keyboard and mouse properly. She has learnt many card games such as Uno, Snap and Happy Families. Uno is her favourite game and she’s pretty good at it too. She can play simple board games too. Maya now enjoys playing with her sister Yasmin. These days, the 2 girls are happy to play together and make up little games to play. She has learnt to appreciate and understand so much more now; previously when we went to the zoo, she would be concentrating hard on the toy she’s holding and not aware of the animals in front of her. Now, she loves going to the zoo, night safari, butterfly park and bird parks. Her eye contact previously was fleeting, it was very hard to get her attention. She had a very short attention span and seemed to be lost in her own world. Her awareness and cognition has improved immensely. Previously we’d be calling her name and she would not respond. Now, whenever we call her, she says “Yes, Mummy” and looks us in the eye.
She has some very girly interests now; princesses, ponies, fairies, mermaids, ice skating, baking cookies, castles, flower gardens, tea parties, wedding gowns and other pink sparkly things are her absolute favorites.
We struggled with daily chores like getting her dressed, wearing shoes, going to school and learning to toilet-train. It was a struggle every day getting her dressed. She would tantrum whenever she had to wear clothes. She also had an obsession with ballet tutus and would insist wearing it every day. She then developed a fancy to wearing princessy dresses and would wear it even to bed. She preferred wearing sleeveless string tops and skirts. She hated wearing pyjamas. Now she wears only the softest prettiest nightgowns I can buy.
Certain key supplements and biomedical treatment made a big impact in certain behaviors and skills. Once we started her on TMG in October, she started tolerating wearing tshirts and pants without any fuss at all. TMG also helped her with toilet training. Her language and cognition made the biggest progress the moment we started her on MB12 shots in July 2009. She started making 1 word requests the first week of starting the GFCF diet. Her hyperactivity and constant climbing and jumping stopped once we started her on anti-fungal treatment. She used to scratch her bottom and bite her toenails, that stopped once we addressed the skin and toe fungal infections.
She used to cry every time we dropped her off at school for the first 3 months. Now, she absolutely loves school. Music class is her favourite subject and she loves doing Arts and Crafts. Previously, going out with her was an ordeal. Now, she is a joy to be with and behaves well. We can now take her shopping, to friends house and to many other places with very little stress.
Recently I asked her what she did in school. She replied “I played Uno!” What else did you do I asked. “I did Arts and Crafts. And music class with Ms Phoebe!” What did you sing in music class? “Hannah Montana! Hannah Montana has an acoustic guitar! Miley Cyrus is a girl. ” Then I asked what she had for lunch. “I eat chicken…… not sausages.” When I checked with her teacher the next day, the teacher confirmed that all of the above were correct. The teacher also said that Maya had chicken f
or lunch yesterday, but she had sausages the previous day.
or lunch yesterday, but she had sausages the previous day.
We baked christmas cookies and cakes recently. Maya said “Mummy, what are you cooking? You’re a good chef Mummy. I am a waiter!” She loves helping me in the kitchen. She helps to stir the batter, brush margerine on the cake tins, places the muffin paper cups into the tin, spoons the batter into the cups. Then she gets to decorate them anyway she likes. There’s lots of rainbow sprinkles, silver balls, sugar flowers and chocolate buttons.
A couple of weeks ago, Paul and I were in our room. Maya came in dressed in her current favorite white dress and wearing a little wedding veil on her head. She said “Look mummy, I’m a wedding girl!” I asked her who she wanted to marry, is it Prince Charming? And Maya said “No, I’m going to marry Daddy!”. I had a sudden flash forward then; I could picture in my mind Maya walking down the aisle and getting married. Someday, my little girl will grow up and fall in love, get married, have children of her own and lead a happy life. We are very proud of her indeed.
When we first received Maya’s diagnosis, we despaired that we may not be able to help our child. Our main concern was the mistaken belief that Malaysia may not have the resources and services compared to other developed countries. We felt pressured to move to Australia, the UK or USA. It took a little bit more effort, but we managed to overcome any challenges that came our way. Being a Malaysian and living in Malaysia did not stop me from helping my child. It wasn’t easy, but nothing in Autism is easy. Malaysia Boleh!
A combination of intensive biomedical as well as intensive ABA has shown us tremendous results. When we first started ABA, we were warned that ABA will turn our child into a robot. That her speech and behavior modification will be stilted and robotic. We were told that ABA methods were unnatural, that it was like training a dog. When we first started biomedical interventions, mainstream medical doctors would try to discourage us from it. Claiming that it’s unproven, it’s nonsense, that we’re wasting our money, that it will not help at all. How wrong they are…… We experienced utmost kindness, patience and dedication with our ABA team. ABA has shaped her skills and abilities. Maya’s speech is very natural, she is full of joy and life. She is certainly not a robot. Biomedical treatment has made amazing improvements in Maya’s health and behavior. We would not have achieved such rapid progress with ABA without the help of biomedical treatments. These two interventions complimented each other.
We couldn’t have done this without the help of our hardworking ABA therapists, our DAN doctors and the support of family and friends. Although 2009 has been an incredibly challenging and stressful year, it has also brought us much satisfaction and happiness. We feel that we have our daughter back, that she is no longer lost in Autism. Maya is not yet Recovered from Autism, however we truly believe that soon she will lose the ASD diagnosis. It’s so close I can smell it. We are on the way to Recovery and we hope that next year be filled with more love and joy. Happy New Year!
>How To Give Supplements
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When doing biomedical intervention, it consists of multiple tablets, capsules and liquid supplements. The child has to take up to 20 different supplements a day, for some many more. And getting your young child to take it all is a herculean task, even more difficult when dealing with a child with Autism Spectrum Disorder. No amount of rationalizing, bribing, encouragement and begging would force our kids to open their mouths, and if they do, they end up spitting it in your face. Some children including Maya are so resistant to taking anything remotely suspicious, their long-term feeding issue makes taking supplements even harder. And I don’t blame her, those supplements tastes horrible!
When first starting biomedical, we had a really tough time with Maya. We found out very quickly that ‘tough love’ did not work with her whenever we forcefully fed her with the supplements. Apart from spitting, she would usually end up vomiting everything in her tummy, she would cry and rage for a long time.Because our girls are physiologically too young to be able to swallow capsules and tablets, we end up opening a capsule and dissolving it into milk or juice. Previously I would grind up tablets in my lesung tumbuk, however I have since found pill crushers which grinds it up into a very fine powder. We tried feeding the liquid supplements with a spoon, but that turned out to be a disaster too. She would knock the spoon out of our hand, precious supplements flying everywhere.
We experimented by mixing and hiding it in milk or juice. Tried different coloured sippy cups, drinking from a straw, only putting in 1 capsule into a big bottle of milk, hiding it in rice, mixing into peanut butter, mashed bananas, we tried everything. It took us a long time to find a groove; we now know which supplements are better tolerated taste wise in milk, which ones are better in juice. Maya is very sensitive to taste, she would refuse to drink the milk constantly when we added in supplements. We wasted so much money, milk and supplements down the drain. We would start very slowly, adding just 1 supplement to the milk, and at only a quarter of the dosage. We would then slowly build up the amount till she can tolerate the whole dosage. Then we would add on a 2nd supplement and start at 1/4 dosage. This worked very effectively for us, we can now add 3 to 4 supplements into 1 bottle of milk.
There are supplements that turns the milk pink or green, we would give these supplements in milk in the middle of the night while they are asleep. We also find that the girls are more tolerant of stronger tasting supplements when drinking it in milk when they are deeply asleep. We take turns to feed the girls their milk at midnight, for now this is what works for us.
I have melted precious organic gfcf chocolate, mix into some rice crispies for some crunch and add the supplements in. And chill them in tiny paper cups like candy. It worked beautifully for 1 day. The next day onwards she refused anymore chocolate. Because both the girls don’t like soft slimy food, I couldn’t try adding supplements to jelly. One desperate day, I mixed some of the more bitter supplements into ice cream – this worked the best! However, there are no GFCF ice cream available in Malaysia so the thought of giving Maya dairy-filled ice cream everyday went against our GFCF principles. I’m still considering buying an ice-cream maker, hopefully I can create a delicious homemade GFCF ice cream.
I bought a box of colorful straws and this worked wonders in getting Maya to drink the supplements mixed with juice in a cup. Everyday she would request for a particular colored straw and will happily drink the supplements. She may not drink it all in one go, we would still have to chase her around the house and coax her to drink it all up bit by bit. Slow but steady I say.
We enlisted the help of our wonderful ABA team to start a tolerance program for taking supplements with a syringe. We supplied the team with a large box of 5ml syringes and the team got to work. After a couple of months into the program, it seemed to me to be a complete waste of time and precious syringes. Maya would only tolerate taking water from a syringe if it was from a therapist, she refused to do it with us at home. It has now been 3 months since Maya started the program and this week we managed to give her supplements in a syringe! We have managed to give her 3 different types of supplements in a syringe, but there are still 20 more to go. Perhaps next year we will do a program to teach her to swallow tablets using ABA.
Maya has always had an intense fear of syringes, ever since very young. She would run away screaming whenever she saw a syringe, she would be so scared and agitated she was inconsolable. We still have to smuggle in supplements in milk bottles at midnight, however there has been great progress.
For any parent feeling frustrated trying to figure out how best to administer these many supplements, only know that the gains and benefits are enormous. Every precious supplement that you successfully manage to give your child is another step closer to improving his health and mind. By being creative, consistent and resilient, you will find what works best for your child.
Don’t feel discouraged, you can’t compare your child to Maya. Don’t compare your child to the neighbor’s son who learnt to swallow tablets at 4 years old. Don’t compare your child to your nephew who’s compliant and meekly takes any vitamin given to him. Each child has their own preferences, each child has their own diagnosis to battle with. Also remember that it took us 9 months to get to where we are now. It has been some time since Maya rejected a milk bottle complaining of the taste. I feel an enormous sense of pride for Maya, allowing us to put the much hated syringe in her mouth and swallowing those nasty tasting supplements. She is the one who has worked the hardest, her accomplishments and improvements are testimonial to her strong spirit and amazing strength.
>Maya's Progress
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Having done a recent psychological evaluation, we are gratified to see on paper an accurate and comprehensive overview of Maya’s progress and how far she has come. Maya was diagnosed with Mild to Moderate Autism in June 2008. After over a year of early intervention, we have seen many improvements in Maya. Here are some of the details from her recent assessment compared to previous tests done.
Intelligence & Mental Development – Maya’s IQ is now 107 which falls within the Average range. 1 year ago, her IQ was 77 which indicated a Borderline score.
Auditory and Expressive Language – Maya is now communicating at her age appropriate level of 3 years 9 months at the time of the assessment. She has made 1 year and 2 months progress in her language ability in 7 months.
Adaptive Functioning – Maya’s level of communication, daily living skills, socialization and motor skills has increased overall to 88, which indicates Adequate Adaptive Functioning. 1 year ago, she scored 67 which is in the Low range of functioning with Mild Deficit.
Getting to where we are now has been tough, we have cried blood, sweat and tears and sunk in enormous amounts of money and resources. We have suffered many personal and professional setbacks, made sacrifices that no one else could understand except perhaps for another parent with a special needs child. The monetary cost, sleepless nights and emotional toll it took may never be recoverable.
Some people have asked us whether it was ABA or biomedical that made the difference for Maya. It was both. The biomedical treatments has healed and repaired some of the damage in Maya’s body. A healthy body is a healthy mind. This in turn allowed Maya’s mind to better concentrate, absorb and learn, making ABA more effective. Maya’s progress has been rapid in the past 9 months, which coincided with us intensifying her biomedical treatments as well as increasing her ABA hours. I do not know whether this is considered `normal progress’ or exceptional progress, however a combination of intensive ABA and intensive biomedical intervention is what works for now.
I am amazed at the strength and resilience of my daughter, she overcame all odds that came her way. She continues to struggle with many debilitating aspects of Autism, throughout it all her naturally sweet and gentle personality still shines through. The glowing assessment report couldn’t have come at a better time. Constantly battling Autism every single day has left us battered, weary and drained.
We celebrated the good news with a long overdue holiday in Phuket. Even though it was monsoon season there and rained continuously, we all had a wonderful time. The girls especially loved breakfast time with the baby elephants every morning. We still have a long road ahead, but at least we know that we’re heading in the right direction.
>1 Year Later
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Maya has improved considerably in the past 1 year since her diagnosis. Some skeptics choose to feel that the improvements were part and parcel of her getting older. Occasionally we feel that our efforts were being undermined by people whose lack of knowledge or ignorance makes them so quick to jump to conclusions. However, we are blessed with good friends and family who support and encourage us.
My goal is Recovery for Maya,and I look to several people for answers. Lisa Ackerman, Jenny McCarthy, Karyn Seroussi, Stan Kurtz, Dr Brian Jepson, Dr Kenneth Bock, Dr Steve Edelson, Dr Nancy O’Hara, Dr Jerry Kartzinel, Dr Elizabeth Mumper, Dr Andrew Wakefield, Dr Jon Pangborn, Dr Bernard Rimland – they may not be household names, but for us parents who chose to do biomedical, these people are our heroes. Lisa, Jenny, Karyn and Stan have recovered their kids from Autism using a combination of behavioral therapy and biomedical intervention. The doctors are all key members of Defeat Autism Now!, a fantastic foundation created by the late great Dr Bernard Rimland (www.autism.com). I have met some of the speakers and key members of DAN! and find them kind, caring, highly knowledgeable, helpful and full of integrity. So I chose to follow in their footsteps.
Autism if left untreated will either show no improvement at all or get worse. Different children will respond differently to every therapy or treatment. A combination of intensive ABA and biomedical treatment has shown the best result for us.
This is a look at Maya 1 year ago – intense echolalia, very little eye contact, prefers to be alone, lines toys up, doesn’t play appropriately, mood swings, does not handle transitions well at all. A lot of temper tantrums, banging head on the floor, crying and rolling on the floor, hyper active, wakes up in the middle of the night for 2-3 hours talking or laughing. She was constantly licking everything including toys and supermarket floors, very picky eater, addicted to milk and bread, chronic constipation, red rimmed eyes, dark circles under her eyes, tip toe walking, always climbing and jumping off furniture, runs sideways and looks out of the corner of her eyes. She was uncontrollable at times, had an intense fear of strangers, unable to form relationships with peers, indifferent to other children, does not seem to hear when we call her, when asking for something she will pull our hand and point at the thing with our hand or tantrum. We avoided taking her to public places because she would scream and scream, she was continually living in her own world. Her Psychological Assessment reports her developmental age at only 18 months, even though she was 2 years 8 months old at that time. There was very little happiness in her and we couldn’t seem to get through to her.
Maya now – she speaks in 7-8 word sentences, looks us in the eye, obeys and understands instructions, beginning to understand reasoning, she is calm and no longer agitated, no tantrums, no more rolling on the floor, sleeps 11 hours straight every night, smiles and laughs, plays well with her sister, very affectionate, greets us every time she sees us, good appetite, very easy to take out in public, shows interest in other children, has tried to initiate conversation with other kids, requests for everything with proper language, let’s us know her likes and dislikes, no more irrational fear of strangers. She now plays appropriately, has pretend conversations with her dolls and her imaginative play has finally emerged, always asking us to play with her, she is loving and responsive. We love taking Maya out, always trying to expand her horizons and giving her new experiences because she is able to absorb so much more and she genuinely enjoys new experiences. Life with Maya is now full of happiness, however there are still other issues we need to keep working on and I will keep on going until Maya is recovered.
Maya is doing intensive ABA for 30 hours a week, she is doing her programs really well and her progress is good. From not being able to sit at the table, she is now learning to draw, plays games with other children, increased her vocabulary tenfold, learning more complex sentence structures, build tolerance, master many of the fine motor skills she lacked previously, able to ask and answer simple questions. ABA has helped shaped many of Maya’s abilities and intelligence that was previously shrouded by Autism.
Maya is on gluten-free and casein-free diet, low sugar, no yeast and no soy. Most of our foods are now organic, we only use organic cleaning products including laundry and dishwashing detergent, all natural and organic soaps and shampoos, we changed our Teflon cookware to stainless steel and we’ve cleaned up Maya’s room of all possible allergens.
Along with the improvements, we have experienced several set backs. Our journey has been hard, but every day we get closer and closer to the end of the tunnel.
Spectrum Mum in Malaysia 