Autism: Your Steps As A Parent

I have recently replied on a random post on LinkedIn, which mentioned one of my connections having an autistic child. I rarely comment, however whilst browsing through the comments, I have stumbled across so many harmful advice, that I could not just keep my mouth shut.

And by harmful advice I mean things like “meditate with your autistic child to “calm his/her brain””, or “start with yourself — you’ve got an autistic child because you’ve been consuming alcohol and drugs during your pregnancy” (yeah, put it all on mothers, why don’t you), “take this pill — it will 100% help your child” etc.

And since too many people have turned to me asking what I did as a parent of autistic children, I have decided to make a post about it, because I couldn’t reply to all, unfortunately. If I missed your message, I apologize.

Disclaimer: I am not a medical specialist, nor am I a tutor, psychiatrist or a speech therapist. I am “just” a parent of autistic children, who has gone through (and who is still going through) numerous challenges. There were things that we did right, and it might be that they would help you.

However, every child is different, and it’s up to you which system you will follow to get results for your kid. It will always be up to you, unfortunately — there is no one else who will be there for your child but you. Whatever choice you make, it’s always on you. But without taking risks, we will move nowhere.

Just another thing to consider.

With that said, let’s start with a short intoduction: I’ve got twin sons, who both have autistic variations.

One of them has got ADHD plus autism, another is more on the “autistic” side (more issues with communication).

I won’t be bothering you with many things that didn’t work for us, and how we lost precious time back then hoping that doctors will somehow eliminate this autism thing from our children with their drugs.

I hope parents learn ONE thing early in their journey: Doctors can NOT heal autism with medicine. It’s incurable. BUT it can be corrected, so that the behavior and the functional capabilities of the child will be as close to normal as possible.

The GOAL is to integrate your child into the society. To that end, do think, which skills he/she will need first.

Naturally, self-care and communication skills come first, academic knowledge and learning their future trade or occupation comes second.

Your autistic child will never be the same as other children. It takes time to accept that. I’m only learning to accept that now, and my twins are 9 y.o now. Hopefully, it will take less for you, because from that moment, everything becomes so much easier. You will see the path clearer, without useless distracting hopes, and you will be able to only focus on things that would make your child’s life (present and future) better.

NOTE: It’s extremely important that you start treatment and tutorship and all rehabilitation process before the child is 3 y.o. If he/she is older, start as soon as possible. 5 y.o is already sort of late, and 7 y.o is beyond reparation in some complicated cases. So, the earlier you start, the better the results would be. We have lost precious months trying one thing after another, and those were crucial months, because my kids were about 2 y.o back then.

So here are some things that we did, and some notes as well:

• We noticed weird behavior at 1.5 y.o., right after one of our last DTwP (tetanus, diphtheria and pertussis) shots. The child who had been always talkative (in a “child” language), stopped talking at all, and rejected all food that we offered to him (and he ate everything before that). From now on, he only accepted bread. Silent, not eating properly, and totally inside himself — so unusual that even we, young parents, noticed. So we went to a neuropathologist, who prescribed us nootropics (“Noofen”).
  
  Now, many people are against nootropics, and I personally can’t see why. IF it makes your child’s progress faster, then by all means, give it to them. Of course, always measure results and always watch how your child is reacting and whether or not it’s good for them.

For my kid, it was good (only one of the twins has been prescribed nootropic at the age of 1.7 y.o.). AND it did miracles for him: he started “talking” again (not words, sounds at least), and started trying different food, and changed his mood to a better one immediately. It was like “switch ON” mode activated. We did a course of nootropics and stopped taking it. It did its job, so no more intakes were required.

Always track how your child reacts to every possible treatment and solution.

• Now, the first mistake we did: even though it was neuropathologist who prescribed us nootropics that helped, in most cases for autistic children/people, their main doctor should be, in fact, psychiatrist. Let it not scare you off, because it has definitely been an issue for me — to acknowledge and accept the fact, that my kids need a help from a psychiatrist. But at least in my country? Psychiatrists have MORE experience and qualification to deal with autism. So find your psychiatrist who will just guide you though your journey.
• Even though medicine cannot CURE autism, it can eliminate certain conditions and get rid of unwanted reactions (or at least, make them controllable). Because autism rarely comes alone: some kids have ADHD, some epilepsia (seizure disorder) or other mental conditions. So to lower the harm from those conditions, doctors prescribe your kids medicine, to block unwanted reactions and THUS help them learn new skills, both basic and academic. My personal opinion is, that if it helps, why not.

• Be careful with medicine though. Watch after the reactions. Whether it’s good, whether it’s not — and consult your psychiatrist each day if required, to correct the medical treatment in time. We have tried multiple things (and several doctors) until we found a professional and medicine that actually helped with our ADHD (not autism in general, to be clear). The progress went so much faster after this, it was like somebody finally gave us a ride when previously we’ve been only used to walking.
• Now, back to the EARLY REHABILITATION. It’s called “early rehabilitation” for a reason — the sooner you start, the better the results would be. Now what we did (ALL of the below — SIMULTANEOUSLY, for the duration of about 5 years, from their 2 y.o. to 7 y.o., adding some lessons and cutting others when required):

1. Psychologist / behavioural scientist — 2 times per week (individual 1 hour sessions; preferably more often, if you can afford that)
2. Musicotherapy — 2–3 times per week (group sessions)
3. Exercise therapy / remedial gymnastics / physical therapy (group sessions) — 2–3 times per week
4. Sensory therapy (attending special dark room with soothing sounds of the nature, different glowing objects, etc. If there’s none available in your area, you can really do it yourself… or basically just spend some time each week in the nature)
5. Sensory therapy with a therapist / behavioral practitioner — 1–2 times per week (individual 30 min sessions)
6. Hippotherapy — 1–2 times per week (don’t expect miracles though, horses and other animals only help to sooth children, and help them control their bodies, while they are sitting in a saddle. After the adaptation period, my kids loved horses and we did hippotherapy for 5–6 years since, just because they enjoyed it. And it was important for them as city kids to learn more about nature anyways)

7. Speech therapist — 2 times per week (we only started attending them after kids started pronouncing their first words with the psychologist / behavioural scientist)

8. Speech-language pathologist — 2 times per week (same)

9. Homework (IMPORTANT!) — 1 –2 hrs per day (each day), doing “homework” from our psychologist / behavioural scientist, who was our lead specialist and with whom we’ve consulted about almost everything. That “homework” was basically the constant revision of her lessons, doing the exact exercises so that they don’t forget, and do them better, so that they could move on to learning next skill during their next lesson.

There is such thing called “controllable stress”, meaning that the child under a slight stress will develop faster. However, it should be contollable, meaning that it should never ever be excessive.

• Bear with me repeating this again, but it’s important to understand that autism cannot be healed, only corrected. And correction should come in all directions: behavior, mind, speech, body (!), manual dexterity (!!!), gross motor, etc. Only then it is possible to teach them academic skills (reading, writing, math etc).
• As to academic skills, there are different techniques that help children to learn faster and easier, but that’s another huge topic. We used methodics from Russian educationalists (Zaitsev methodics) and also Cuisenaire rods key (you can google both, information available in English).
• On top of those lessons, we added up attending nursery/pre-school/kindergarten at the age of 3.5. The most painful experience ever! They didn’t want us there, my kids (of course!) misbehave, and there was fighting with the head master every day. BUT we knew that our core weakness was lack of socializing. My kids needed to learn how to interact with other children. So we took them there for 2 hrs first, a couple of days per week only, then for 3 hrs, and took them away as soon as we got phone calls from their child-minder. The hardest time of all, but it was worth it. Our kids learned how to be at least a little more independent. They learned about their belongings, about their footwear and clothes — basic skills plus communication. So in the end? It was really worth it. FIND some place where your child can learn to socialize. Even though unwillingly (of course…). Couple of hours per week, couple of days per week… It’s gonna be tough, but better to learn how to communicate early on in their lives. It will be a little easier for them to adjust to other people later on.

• When kids were about 4 y.o, Israeli specialists from “Sulamot” early rehabilitation school came to our home city, and we took 20 lessons from them, along with our psychologist / behavioural scientist. We’ve learned how to better teach our kids, and the progress became faster, even though it didn’t change much in our routine. Just the methods/approach changed / was corrected.
• Final note to medical treatment: for ADHD, in OUR case, “Strattera” did miracles. ADHD went away, the only side effect was lack of appetite (the child lost quite a few pounds while taking it). So we have been taking it for 2.5 years, from 5 y.o to almost 8 y.o, and we were super happy with it. The child finally was able to listen and thus learn super fast. However, the stomach aches can be another side effect, and there’s an entire manual how to take it right. My son did experience those pains, so we did lengthy breaks from our medicine. We don’t take it anymore. ADHD is now sort of back, but definitely NOT the uncontrollable way it was before. My son can actually be talked into calming down, which was unrealistic few years back. It’s a Canadian medicine from Lilly pharmaceutical company, so it should be available in any country. However, it doesn’t work for everyone, so ask your psychiatrist about it, and if it might be helpful for you.
• Another thing we did at about 2.5 y.o was Transcranial direct current stimulation (TDCS). Probably it stimulated our ADHD even further. Yes, it can stimulate a child into some talking (in terms of sounds at least), however the side effects are quite serious. If you have epiactivity (you should absolutely check it!), then it’s forbidden to do TDCS. And even if it’s not, it’s quite risky anyways. We didn’t know that, and the children became more restless and more ADHD-ic (both, even the one who didn’t have any issues with ADHD previously). But, at the same time, the progress sort of became faster. I cannot say for sure if it was thanks to TDCS or other things that we did at that time. I wouldn’t recommend it, but since we did it, I had to mention it as well. This one should be approached with extreme caution, if you go into the risk of trying it.
• Also, we did several genetics tests, to find out whether or not our children had gluten or casein intolerance. If they had, they would have had to keep special diet all their lives, just like diabetics, because gluten and casein would have been like poison to them AND their brains. I have seen children of my friends with this intolerance, and this is a real pain for their parents, having to cook those gluten- and casein-free food, and making sure the kid doesn’t eat anything forbidden outside home. Also, it is quite pricey, as those gluten free food items cost more than ordinary food. Luckily, it appeared that my kids don’t need this diet.
• Last thing to remember: No time to lose. The more you do with your child while he/she is still very young (UNDER 3 y.o is the optimal time to start the rehabilitation process, but then again, the earlier the better), the better the results would be.

Yes, one of the parents would probably have to dedicate several years of his/her life, driving their autistic kid(s) to/from the lessons (we had about 4 hrs per day of lessons with the specialists, and about 2 hrs per day doing “homework” at home), and browsing the web for some new methods, and sitting on parents’ forums and inside Facebook groups for parents with similar issues, to try to learn something else they might have missed.

Ideally though, both parents should contribute, to understand their child in full, and to learn to love them the way they are. Harsh truth: sometimes one of the parents becomes a caregiver, whilst another strays away. Earning money is way easier in this case, and more “rewarding”, like, so some parents prefer to only focus on this side of things. Which might be harmful. Common thing to happen, an autistic child can become a total and unwanted stranger to both parents in that case. To the caregiver, because he/she is too tired of such a life, to the earner, because he/she takes no time or effort to get to know AND love their child.

Love is not something that comes by default when your child is born. Fortunate are the souls to whom it comes naturally. In case of autistic children, the cause of love becomes even more complicated to fathom. In many cases, your child will not hug you back, nor say how much they love you. It hurts.

It hurts to the very core. For all your incredible efforts, you might get nothing in return. Unlike parents of “regular” kids, who can see the outcome of their doings. It hurts even more. So make yourself a favor — don’t compare your autistic child to non-autistic children.

Please remember: it is crucial to learn to love your child. Because if you don’t, nobody else will. They deserve your love. This is, in fact, the most important skill for any parent to master.

Learn to love your children the way they are.

Me & my hubby were lucky to do it all together (we worked shifts back then), and there was nothing that I wouldn’t trust my husband to do. Even though our kids had tantrums every hour, I knew I could totally rely on my husband — even more than on myself. He turned out to be stronger.

• As your child grows, the social pressure will grow accordingly, and the situations will become more complicated. Your child will face with new challenges, so it’s important to prepare them for those at the right time. Tutors in school might be a great solution, if this option is available in your country, or if you can afford them.
• Last but not least? Take good care of yourself. Prioritize yourself and your health first, because you need to be strong and healthy in order to take care of your child. Don’t neglect your well-being, both physical and mental. Take any opportunity to have your own time, hobbies, work if possible — don’t focus on autism solely, it will eat you up alive. You should integrate your autistic child into your life and into this world, not integrate your life into autism. Don’t let it win. Please take care.

Not all problems will go away. It will always be there, in one form or another. You will fail, stagnate, probably feel lack of resources (financial, mental, physical, and all of them at the same time), and lose your heart time and over again. This is all part of the progress. Your mutual progress.

Your goal as a parent is to make your child as close to the society norms as possible. To make your child as independent as possible.

And God help us all on this journey.