10 Ways Being the Parent of an Autistic Child has been Different than Being the Parent of a Neurotypical Child (So Far…)

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Lila is our one and only – and from what I can tell so far – here are just a few of the differences between us and parents of non-special needs children:

1.) The Routine

For the love of sweet baby Jesus, don’t change the routine. It’s a lot like the movie “Groundhog Day” at our house, except the routine doesn’t always work…yet we cling to it like a lifeboat in the middle of a storm. Those with autism have a huge problem deciphering what will come next – having a set routine helps them create stability, and allows them to feel safe.

 2.) Food/Eating

I can count the number of foods our daughter will eat on one hand. When she DOES try a new food, even if it’s super unhealthy (like a donut, or cookie) – we’re thrilled! She is not just a “picky eater”, she is a “problem feeder” – meaning she has an extremely restricted number of foods that she will actually eat on a regular basis, she cries and falls apart when presented with a new food, and will refuse entire categories of food based on texture.

 3.) Sleep (or Lack Thereof)

We didn’t sleep through the night for over two years. She was up at least 2-3 hours overnight – every night. The lack of sleep was crippling, and I have no idea how we continued to function. Some children with ASD use melatonin since they’re bodies don’t produce it – that didn’t work for our daughter, but we DID eventually find something that worked best for her.

4.) Public Outings

Everyday outings can be overwhelming for those with autism – the lights, sounds, the typical hustle-and-bustle that you or I would consider “normal” can just be way too much for them to handle, so they either shut-down or meltdown. Sensory processing issues can be crippling at times, and all of it definitely plays a big part in where we can (and can’t) take Lila successfully. She has to work incredibly hard just to be “OK” in our world – every single day.

Play dates are the most difficult thing to watch (for me, anyway). Our daughter and our life are completely normal to us – until I’m faced with “typical” children her age. Seeing children genuinely try to interact with Lila; call her name, go up to her and speak, follow her around, and attempt to play with whatever she’s playing with – and watching her get upset and run away – it’s brutal.

 5.) Medical Decisions

ALL parents are nervous when their child goes medical tests, procedures, surgeries, etc( and we’ve been through plenty of them). However, once you have seen your child have a regression due to something no one was able to warn you about (ie nitrous), it takes that paranoia to a whole new level. I second-guess everything, and do more research than you can possibly imagine on a myriad of topics you’ll never have any need to know about (ie MTHFR gene mutations).

She has fought SO hard to get where she is, the thought of us making a decision that could cause us to “lose” her again is beyond terrifying.

6.) Friends/Family

We used to have more friends (and family for that matter). The truly good people stick around, and there are those who don’t. It’s a lot to deal with – totally understandable. If you’re not willing to put in the work to actually interact with Lila on her terms, or if you look at her and treat her as “less than” – she doesn’t need you in her life – and neither do we.

 7.) Holidays

All of us have these preconceived ideas about the holidays and what they “should” look like. There are a lot of things about the holidays that those with ASD find difficult to deal with (change of routine, crowds, the noise, new and different smells, traveling, etc). We have had to ditch a lot of the old ways of doing things and find ways to celebrate the holidays that are new and different – we create our own “normal”- and just do what works best for our family.

8.) Communication

We don’t have a child who runs to us yelling “Mommy! Daddy!” and hugging us. That’s just not how it works with Lila. We’re so incredibly grateful for where we are now – a year and a half ago (to her) we didn’t exist. She wouldn’t acknowledge us hardly at all. Nowadays she follows us around wanting to interact with us – it’s incredible! She is still currently considered “non-verbal”, and trust me – she loves us just as much as any other child loves their parents (I can FEEL it!) – she just shows it in a different way, such as resting her head on my shoulder, touching her forehead to mine, etc.

She cannot talk, point, etc. so she uses PECS (picture) cards to let us know what she wants. She may also push us and squeal to try and get us to do something she cannot yet communicate. Having a toddler with an average or above-average IQ who cannot effectively get across her wants and needs is beyond frustrating for her – we continue and try to help her develop new ways to help her use her own “voice”.

Because as cute as the meme is – I don’t WANT to be her voice. I want her to be able to speak for herself!

 9.) Therapy & The “Language”

I rattle off acronyms when I’m talking to people about what’s going on: IEP, PDD-NOS, ASD, NT, PECS, MTHFR, IFSP, DD, EI, GF/CF, ABA, the list goes on and on. It’s just part of our everyday language. Therapy – a loaded topic nowadays within the autism community. You’re either primarily an ABA family, or a Floor-Time/Play Therapy family. We’re the latter. I have nothing against ABA – I just think different methods work better for different children. Either way you go, it involves about 40 hours a week. With ABA, professional therapists are doing the work with the child, and with floor-time it’s the parents working round the clock on new and existing techniques.

 10.) General Outlook & How we Live Our Life

There is an increased level of awareness for disabilities of ALL kinds, and a vulnerability that comes along with that – “those things” don’t happen to “other people”, they can happen to us – any of us – at any given time.

Lila stopped hitting the typical milestones a long time ago. We live our life at her pace, and nothing (I mean nothing) is taken for granted. We are truly grateful for each and every accomplishment, no matter how small it may seem. We no longer sweat the small stuff – there’s no time for that! We live day-to-day, and have honestly become all-around better people because of our daughter. If I could only choose one child in all the world – I would choose her, every single time. She has been (and no doubt will continue to be) one of my greatest teachers.

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10 thoughts on “10 Ways Being the Parent of an Autistic Child has been Different than Being the Parent of a Neurotypical Child (So Far…)”

    1. We tried Melatonin for quite a while, but it didn’t work well for Lila. It DID help her get to sleep, but she had night terrors, and we had increased problems with night-waking (she was up for 2-3 hours in the middle of the night – every night).

      Our pediatrician’s nurse recommended Periactin (Cyproheptadine) – we started it maybe 4 months ago and it changed our lives. We give it to her in some juice around 8-8:30pm. She still doesn’t go to sleep till around 10pm, BUT she sleeps all night now unless she is having GI pain.

      I hope you find something that works for you and your kiddo!

      Like

    2. This, 100%, could have been written by me a year ago. I have a 3 years old girl with ASD, reading this reminds me of us in the early days of her diagnosis. You are doing great, and I’m sure she will be the best Lila she can with all the love, patience, understanding and guidance you have shown

      Like

  1. Hi, please can you share how you got your daughter to sleep through the night after 2 years. We are 8 years in now and our son wakes between 1-3am and stays awake until 10pm the next day. The melatonin helps to get him to sleep but doesn’t sustain his sleep. We’ve tried various other methods with no success. Just wondering what you did? Many thanks from one asd mum to another x

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    1. We tried Melatonin for quite a while, but it didn’t work well for Lila. It DID help her get to sleep, but she had night terrors, and we had increased problems with night-waking (she was up for 2-3 hours in the middle of the night – every night).

      Our pediatrician’s nurse recommended Periactin (Cyproheptadine) – we started it maybe 4 months ago and it changed our lives. We give it to her in some juice around 8-8:30pm. She still doesn’t go to sleep till around 10pm, BUT she sleeps all night now unless she is having GI pain.

      I hope you find something that works for you and your kiddo!

      Like

  2. Every child is different, but this article was very close to my sons challenges .Thank you for sharing. Not being alone in this world is so important . My son now talks and has a couple of dear friend. The many hours of therapy was so hard but worth it:) yes, our world changed as well, but we have the best! We are family, we are love. Take care all of you.

    Like

  3. Hi, We have a 6 year old ASD confirmed and a 4 year old ASD has any one found any thing that works for sleeping, me and my husband are now unable to string a sentence together due to lack of sleep. We are absolutely exhausted.

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    1. We tried Melatonin for quite a while, but it didn’t work well for Lila. It DID help her get to sleep, but she had night terrors, and we had increased problems with night-waking (she was up for 2-3 hours in the middle of the night – every night).

      Our pediatrician’s nurse recommended Periactin (Cyproheptadine) – we started it maybe 4 months ago and it changed our lives. We give it to her in some juice around 8-8:30pm. She still doesn’t go to sleep till around 10pm, BUT she sleeps all night now unless she is having GI pain.

      I hope you find something that works for you and your kiddo!

      Liked by 1 person

  4. Hi i loved reading your blog i have worked in the special education secter for the last 16 yrs we also swore by PECS but over the last two yrs have moved onto Podds for communication the outstanding difference in most of our students have been short of amazing look up a lady called Jane Farral she works on the four blocks of literacy getting lids to read write and speak amazing stuff just thought i would share wigh you 😄

    Like

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