10 Valuable Lessons For Autism Parents: A Journey Of Grace And Dignity

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.

autism

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

 

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36 thoughts on “10 Valuable Lessons For Autism Parents: A Journey Of Grace And Dignity

  1. >Hi Marissa..it really feel a relief after found your blog. Make me into tears while reading it. My son is 4yrs old and expected to have AADH.currently we are undergoing treatment at Prince Court for speech & occopational therapy. I really hope he will recovered..we travel from Terengganu almost every week for the treatment. Thanks for sharing & i definately going to visit your blog offen..

  2. >luv this post..about the diet,it's really hard to avoid gluten & casein coz my son likes roti canai (well,we r malaysian rite..)luckily he's more into rice now so slowly can practice GFCF..

    • You can try tosai . It make fr rice flour.. We use to eat at mamak a lot, roti canai.. Now we chg to eat tosai 🙂

  3. >Hi Marissa, from the whole 7 years of living with my autistic child, i think the hardest part would be the special diet. There's always hurdle everywhere and anytime. i feel like a loser everytime i read successful stories of parents implementing special diet on their children.good sharing 🙂

  4. >Hi all, thank you for your comments. Syahidah- Raising your special child for 7 years is a super accomplishment by itself already, many parents would have given up years ago. It is the hardest job in the world, only a selected few are chosen. Be proud of that my friend.

  5. Hi Marrisa, I want to take this moment to thank for all the wonderful comments and tips. It really open our eyes when my little boy Ryan Elijah,4, was diagnosed with Big A. It was tearful when I found him after married for six year, I finally had my little boy. All this while leaving peoples life…telling what to do and finally my hubby listening to me went I put my foot down and told him…it’s time to change Ryan’s diet and life for good. Your blog has full information, thank you for sharing with all the parents. All the best and God Bless.

  6. Dear Marissa,

    Can i know what is 5-HTP?

    Is there a difference between CANDEX and CANDIDA supplements? Which is better for the elimination of candida?

    My kid is 7 now and is there any change for recovery>What is the success rate of seeing a DAN dr? I have friend who have seen Dan Dr and there seems to be negative feedback.Is seeing Dan dr involved only by taking supplements or have to take chelation or HBOT or Neurofeedback trestment.

    Is HBOT and Neurofeedback treatment costly?

    I envy your success and am greatful to you for your services and advice to all the ‘sufferers’ of ASD,ADHD.I wished that i got to know you much earlier

    thank you for sharing

  7. Hi Marissa! This is my first reply to your blog but, I have been an avid reader for awhile. My 3 year old daughter is Autistic and we are doing the Specific Carbohydrate Diet, various supplements and just started MB12 shots. She is making slow progress. I can only hope she will look as great as your girls do now! I am so encouraged and impressed by all your work. Reading your blog gives me strength to keep going.

    We have tried things that work, and many things that fail…YEAST IS A BEAST! Did you ever try ThreeLac for yeast? She is currently using Diflucan, Cadex and Oregano Oil. Did you ever seem to get a yeast flare when starting MB12 shots? They seem to be improving her eye contact but, she also seems to have an increase in yeasty behaviours.

    I am also lucky enough to have Dr. Bock as her doctor (but we just started with him recently). I will pray for your girls continued success! Please keep my daughter in your thoughts too! Amy

    • Hi Amy,
      So sorry for the late reply. I agree, Yeast Sucks Big Time…..
      ThreeLac didn’t seem to do much for us. I never heard of MB12 causing yeast flare up. But MB12 is also known to cause some hyperactivity in some kids when first starting, can be up to 3 months. If you’ve got Diflucan, Candex AND OoO, then you’re well sorted with regards to yeast. At least in theory. However, if you find it’s not working, then you need to revise the protocol. OoO is powerful, it’s also antibacterial and antiviral. Some kids may not be able to address viruses too early. It’s great that you’ve got a wonderful doctor to work with. Hopes, dreams and prayers coming your way!
      Marissa

      • I am a mother of 2 children. My eldest son is 2 yrs and 2 months now. He is inspected as a autism kid at Mahkota medical center, melaka on 2 March 2013. We have make an another appointment at Dr Yee Clinic, melaka on 29 Jully, 2013.

        I would like to start the diet immediately for my baby. Milk can be said is his main drink. So, What is the alternative drink I should give him? Or any brand of milk can be recommended?

        Thank you very much.

  8. Salam,

    First of all, thank you for sharing your precious experience and tips with us. I have a daughter Sarah, she’s going 4 y.o this coming December. She’s just disgnosed with PDD-NOS and a week before the assessment, we already started GFCF diet. We did not hope high but Alhamdulillah, it does some wonders to our little girl. Just after a week with the diet, she added few new words and began interested in dolls and other food besides her routine. She loves to try new food now. Pity her that she could not take just ‘any’ food! Luckily, she has no problem eliminating milk and gluten from her diet. I even tried bake choc chips cookies with gluten free flour 🙂 Back to the diagnosis, we were recommended by the psychologist to send her for ST, OT and EIP. We are working towards that.
    Deep down my heart, i am scared of her future but vowed to do the very best i could so that she could at least enjoy the journey of her childhood and beyond.

    Thank you, Marissa 🙂

  9. Marissa, even after reading this first back in December, I came back to read this again. The best article ever on what to do when your child is newly diagnosed. Thank you. Bless you.
    Shelley, New York.

  10. Hi Marissa, my son who is turning 4 this December has been diagnosed with mild autism. We are doing our best to help him and I am wondering whether we should put him on Gfcf diet. I have been reading abt the diet in your blog and others. So far he has not shown symptoms commonly linked to the benefits of the diet — he has no constipation/goes to toilet every other day, no rashes, no tantrum, no sensitivity to change of env, sound, light, etc. His main challenges are speech (limited single words), low eye contact n occasionally hyper. My question is whether he wld benefit from the diet given his condition. I am also worried that change in diet may affect him adversely or create another prob like deficiency in nutritien. Appreciate your advise.

    • Hi marissa.
      I read ur article as well as the comments each one has posted. After reading ida comment I can say my son is also in the same spectrum . He is very mild autistic n his main concern is also speech. I have also decided to introduce gfcf diet for him but afraid if by doing this he wouldn’t get a complete nutrients diey that a small child at his age needs. Wat can I use to replace cow or goat milk. ?

      • Hi Al Shaikh, you can use rice milk, almond milk, hazelnut milk, quinoa milk, camel’s milk. The only nutrients that cow’s and goat’s milk and formula provides would be calcium. However, there are also many other sources of calcium apart from milk. We give our children calcium supplements that you can easily buy from local pharmacies. There are many non-dairy sources of calcium in foods, just Google it.
        Marissa

  11. Dear Marissa,

    Could you please advise the dosage for each of the supplement.
    As for the epsom salt, how frequent do you bath your daughter with it.
    Appreciate your reply on this. My son is now 11 years.

    Thanks

    rgds
    Sam

  12. Pingback: Healing children with autism blog list « Raising a Sensitive Child

  13. Hi,

    I have a nephew who is Autistic. He was diagnosed about half a year ago. He is almost 2.5 years old now. I am desperately trying to look for someone that knows how to do Speech Therapy especially during weekends. His gross motor is great but his speech is non existence. Can anyone advise me on where or who I can look to help into his speech? Thanks!!

    Tia 0107668606

  14. Hi Marissa,
    I’m Tini from Puncak Alam..this is really such an insipiring blog. Having kids with A doesn’t mean it is end of the world. After reading your blog it’s really motivate and increase my passion to support more spectrum’s parents. I’m currently doing my PhD in Monash Uni, my reserach area is on spectrum’s parents..your writing really inspire my PhD journey.

  15. Hi Marissa
    Found your blog by “Accident” – would you be interested in sharing your journey with some of my fellow colleagues for an afternoon talk? Please let me know

  16. Hi Marissa,

    My boy was diagnosed w asd couple of days ago at 32 mos but we have already been sending him for ot and st at 30 mos.
    I didn’t know what else to do to help my boy. When the dr confirmed him, I was shattered. Here I am, searching for hope and answer and I stumbled upon your blog. Please educate me about biomedical intervention. My boy is on fresh milk and he loves his rice and noodles. He doesn’t try new foods. Not into chocolate nor ice creams. We don’t offer processed food but we do put soy in our cooking. His taste bud is very oriental.

    He has improved quite a bit after therapies but there are some behavioural traits that couldn’t be shaken off. He does have speech but he will only say a word or two whenever he wills.

    Just a little background on Noah. He’s a bubble, happy and an affectionate boy. Loves to be cuddled and doesn’t have any other health issue. Sleeps well. Very gentle. Only tantrum he throws is when we failed to understand him sometimes. He normally gesture to bring us or show us stuff. Lately started to point towards objects he wants after therapies. Started pretend play. Loves singing, abc and 123.

    I’m so new to this. I would like some advice and how we can curb this to make him well. I couldn’t sleep well. Every morning when I wake up I felt a stab in my chest but I always have to put up a strong facade so that I don’t affect my family. Both my husband and I are of course broken to learn about this news. Hope to hear from you. Thanks.

    Leng

    • Hi Leng,
      There are many things we can do, starting with the diet. It’s great that he’s on an asian diet and that you avoid processed foods. You are already well on your way for the GFCF diet. Most children respond well by removing milk and dairy products. You can substitute with rice, almond or hazelnut milk. You can contact me directly at klbiomed@gmail.com and we can

  17. I’ve come back to this particular post numerous times in the past 2years. I always share it with other autism parents. It amazes me how this post renews my faith each time. Reminds me that I am doing my best and humanly possible with the limited resource that I have. Makes me feel good about the decisions I’ve made with my son. Thank you Marissa. I can only pray for a success story like yours.

  18. Hi marrissa,
    Hoping for your reply…i’m really in trauma…crying alone….any doc in klang to consult whether he asd or not? I need your moral support and guidance now…thank you in advance

    • Hi Kalai, I’m not sure about Klang, however you can consult with Dr Malinee in Pantai Hospital, Dr Ranjini in Baby & Beyond in Bangsar Village 2, Dr Rajini in Prince Court, or the psychologist in Oasis Place. Do join the KL Biomed group to meet other parents on the same journey https://www.facebook.com/groups/169950843212148/
      I wish you the best of luck!
      Kind regards, Marissa

  19. Dear Marissa
    I have not yet diagnosed my daughter but suspect very strongly that she has ASD. It has been four very stressful and devastating weeks. I am Malaysia but currently reside in Switzerland. Unfortunately believe it or not they are not very advanced in this country in providing ABA or other therapies. The waiting list for a diagnosis in six months! Anyway, I have family in Malaysia and reading your blog makes me wonder if I should bring my daughter back to Malaysia for treatment. Could you tell me what it would cost without any compromise to do the treatments that you recommend?
    Thank you
    Aghila

    • Dear Aghila, there are many things that you can do from where you are. Firstly, I would definitely start your daughter on better nutrition. That means eliminating sugars, preservatives, additives, MSG etc. Basically no junk food. Next step is to remove dairy, then gluten and soy. You can consult with biomed physicians in the UK, or any naturopaths or homeopaths. You can also see an osteopath or chiropractor. Do join the KL Biomed group to meet other parents on the same journey https://www.facebook.com/groups/169950843212148/
      I wish you the best of luck!
      Kind regards, Marissa

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