Patience, Mothers and Autism: A Look Back



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Five years can make an amazing difference in the life of a parent, a child and a family.

Five years ago, my daughter Zoe was four years old and quite a handful. Autism had me on the ROPES.

My poor girl once struggled so much!

Five years ago, the autism diet was an idea scoffed at by my doctor, alternative healing was not even on my radar and I had no idea why the word “detox” was suddenly so popular.

Five years ago, I lived in a nightmare that many families raising children with autism are suffering through today. Today, I’m taking a look back at those days. This post was originally written in June, 2010 and here are some of my struggles with my beautiful daughter, who was trapped behind a veil of sensory issues and speechlessness:

I have had it. I mean, when Amelia was 4, we had already been putting her in time outs for a year. It worked (for another couple of years anyway)!

But here’s a parenting challenge: How do you punish a 4 year old who does not speak (much), will not take direction, and has legitimate sensory issues? I mean, I only painted my house in the winter (beautiful colors no less) and now it’s all covered in pen, crayon, and pencil. Is there a book out there somewhere? “Positive Parenting Kids with Autism”?

Spanking is not the answer, ok? Did I mention she has sensory disorder? For a person who struggles inside their own skin (raising my hand wildly), spanking is cruelty, IMO. Plus I could never bring myself to hit my children when I’m calm, and we all know you can’t when you’re upset.

MOTHERS & AUTISM: IT’S A LEARNING CURVE

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An outfit she picked out herself. She then spent like 10 minutes proudly admiring her fashion sense in the mirror! She’s way better at fashion than I ever was.

Right there, that’s it! My mama instinct kicked in. I believe that spanking is a choice, but as my wise sister once told me, “There’s no one answer for every child.” She was talking about discipline but it truly applies to mothers raising kids with autism. Not every course of treatment, food intervention, conventional therapy will help every child. That’s what makes autism such a slippery beast that’s challenging to study, particularly if you are a government agency hellbent on closing your eyes to studying certain things. A host of issues set off the reactions that trigger autism and only a host of intensive, and child-specific interventions can heal the difficulties caused by autism. What was my daughter struggling with back then?

She is becoming unruly at times. She won’t wear a diaper at home. It’s true she does have a small blemish on her tush, but still! One time I let her go and she pooped all over her quilt. And a tantrum for no ice cream? The movie’s end? Not being let into a room? She doesn’t sit often at the table either, who knows why she does that.

I grow weary of this battle. It’s not completely her fault; her disability caused tantrums that she was smart enough to use other times on indulgent caretakers, lazy family members, and tired and/or sick mommy and daddy. I’m determined to find a way that doesn’t kill me. (Just so we’re clear, the thought of consistency, schedules and the like with little or no improvements from her does kill me. )

If this is you, I feel for you  because you do not know that THERE IS HOPE. You do not know that there is a God who loves you, who has comfort for you. You do not know that your child is eating, drinking and being exposed to things may be destroying her ability to communicate or smile or laugh. You do not know, because no one told you, because naysayers said, “We’re waiting on the science” while your little child screamed and cried and bit herself, and others looked down on you, alleging poor parenting skills when you did EVERYTHING THE DOCTOR RECOMMENDED: Floor time. ABA. Well care check ups. Vaccines on schedule. Antibiotics for illness. Tylenol and OTC drugs when “needed”. GMO foods and formula. It turns out that some of those things did more harm than good – but you didn’t know, and that’s ok.

You know now because I’m telling – from my own experience – these things matter and they may be hurting your child. But don’t lose hope! God is with you – waiting for the right time, the right opportunity to show you what you could change, what you needed to change and when. He lead you to read this post right now. He still is there now watching over your children. I know that now, but I didn’t see it then:

I love her so much. She has so much awesome potential and she’s maturing her abilities very well this year.  But she needs to learn behavior, respect, or as much as a four year old can handle.  Is that too much to ask, in the last few months before she’s 5?

It turns out that this – this love – this is all you need as a parent: love that’s just crazy enough to find a solution where others tell you not to look. Love that has broken your heart so badly, you will do ANYTHING to make your child smile, laugh or talk. Love that fights for truth, fights for right, fights to help an injured child, fights to protect her and the families of other injured children. God’s love is like that too:

Love suffers long and is kind; love does not envy; love does not parade itself, is not puffed up; does not behave rudely, does not seek its own, is not provoked, thinks no evil; does not rejoice in iniquity, but rejoices in the truth; bears all things, believes all things, hopes all things, endures all things. -1 Cor. 13:4-6

It’s that love that lead me, in God’s time, to the solutions that were right for my child. Sometimes you have to get to a breaking point before things can get better. There is a time and place for everything, and those times and places came together when I met a friend who attended my childrens’ school briefly who taught me all about the alternatives for treating autism.

These treatments take financial and emotional commitment. For women balancing motherhood and autism, there are no quick fixes or easy answers. This is a challenging journey but it can be a path to promise and a brighter future for your child. Not every solution will work, that’s true, and yes, you’ll find friends on this journey who you may envy as you watch their children heal at a pace your child cannot.

Let that go. Don’t waste precious time comparing your child to anyone, nor line up your sorrow against anyone else raising a child with more or less of a disability. That’s never ok to do; it will only lead to pain and pride or jealousy. Instead, look for the good in your child. Every kid comes to this earth with a strength, with a unique ability. Never underestimate the worth of things the world doesn’t value: like a small smile, a big hug, a new ability your child attains even if it’s 5, 10 years later than his or her peers.

CELEBRATE THE SMALL

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A recent trip to Cabella’s. We’d have never willingly gone to a big, crazy store like that when she was 4.

God wants us to do this: to celebrate the small. To enjoy the blessings we have now, for our children are blessings (Psalm 127:3). If you’re feeling weak and overwhelmed, that’s ok too, because then God can truly shine in your life, as the apostle Paul shares with us:

And He (God) said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. 10 Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake. For when I am weak, then I am strong.  -2 Cor. 12:9-11

I want you today to be challenged, encouraged and inspired by my blog. I’m praying for this to happen, and if you want to see something here that I’m not supplying, please ask. I want to help you in this journey and make your burden lighter. Your children deserve that.

Editor’s Note: This post was originally published in June, 2010.

 

 

  1. My first inclination .. the first thought was remove everything sensory away from her. Instead of punishing her, remove everything. Take everything she would use for entertainment and put it out of her reach and then use them as rewards for when she behaves. Kind of a reverse pyschology thing. Either that, or paint the bottom half of your walls with chalk board paint and let her go. Choose your battles for your own sanity.

    • Hmm, that’s interesting! I’ll consider that. Thanks Ginger. No, no blackboard paint on my walls BUT maybe there is another solution? Paper taped to the walls? Rows of black boards? Thinking on it..

  2. I wish I had some answers for you. I gave up on time outs with Em, instead, I put her to work. I give her a rag (or a container of wipes) and give her a piece of furniture, a toy box, etc. to clean. I don’t think she REALIZES she’s being “punished” but she ends the behavior and is productive. But I know there are different issues involved. Hugs for a survivable day tomorrow!
    CJ recently posted…Karma And Such?My Profile

  3. {{{HUGS}}} I have no magical words of wisdom, and the mental health professionals *still* haven’t settled on an official diagnosis for my boy, who is now 17. But if he’s any indication, things *do* improve eventually.

    So hand that child a Magic Eraser, and see what happens. 🙂

  4. I just wrote a really long comment full of empathy, mild profanity and complete faith in you as you continue powering through this weary time. I think it may have been erased. So instead I will just tell you you’re doing a great job. I can tell, just by your words here…

    And I just noticed you included me on your parenting blog list. Thanks so much! Can’t wait to see what the others are all about.

    Love,
    Laurie
    Living Power blog
    Laurie Wallin recently posted…You’re Doing It Wrong!My Profile

    • Hi Laurie! I didn’t get it at all, must have gone into the ether 🙂 Thank you. I’m managing, really, but both girls are in a rebellious phase – just in time for summer! Oy.

      You are welcome 🙂

  5. I just wrote a really long comment full of empathy, mild profanity and complete faith in you as you continue powering through this weary time. I think it may have been erased. So instead I will just tell you you’re doing a great job. I can tell, just by your words here…

    And I just noticed you included me on your parenting blog list. Thanks so much! Can’t wait to see what the others are all about.

    Love,
    Laurie
    Living Power blog
    Laurie Wallin recently posted…You’re Doing It Wrong!My Profile

    • Hi Laurie! I didn’t get it at all, must have gone into the ether 🙂 Thank you. I’m managing, really, but both girls are in a rebellious phase – just in time for summer! Oy.

      You are welcome 🙂

  6. Hi Gina,

    I’ve been following your blog for quite some time now, and I just can’t seem to get enough of it. If you have a Paypal address I would love to send you a donation to help support your blog. If you could email me the details that would be cool.

    • Hi John! I really appreciate your offer, but I think I’d prefer if you just sent more readers my way, and made use of the affiliate programs on my page. Thanks!

  7. Hi Gina,

    I’ve been following your blog for quite some time now, and I just can’t seem to get enough of it. If you have a Paypal address I would love to send you a donation to help support your blog. If you could email me the details that would be cool.

    • Hi John! I really appreciate your offer, but I think I’d prefer if you just sent more readers my way, and made use of the affiliate programs on my page. Thanks!

  8. I hear you about consistency and schedule. my son will be 2 next month I just can’t seem to make that happen. It’s against my nature I think. So, instead I try keeping little things predictable like when we leave the house my son gets to open the door for us. It’s do cute he holds the door open and says “here you go, mama” in a super sweet voice. This always calms a bad mood if I am in one.
    Christine recently posted…Will’s pet adoptionMy Profile

    • Christin that is great thinking! It astonishes me how much creativity in being a parent of a child with special needs. Given that my other work is also creative, no wonder I have a hard time filling my creative well!! Predictability is a good thing to emply, and I do when I can 🙂

  9. I hear you about consistency and schedule. my son will be 2 next month I just can’t seem to make that happen. It’s against my nature I think. So, instead I try keeping little things predictable like when we leave the house my son gets to open the door for us. It’s do cute he holds the door open and says “here you go, mama” in a super sweet voice. This always calms a bad mood if I am in one.
    Christine recently posted…Will’s pet adoptionMy Profile

    • Christin that is great thinking! It astonishes me how much creativity in being a parent of a child with special needs. Given that my other work is also creative, no wonder I have a hard time filling my creative well!! Predictability is a good thing to emply, and I do when I can 🙂

  10. I like the suggestions of enlisting her aid in cleaning her artwork off the walls. Be forewarned though, if she is like my Aspie, it may appear a daunting, insurmountable project. See if you can break it down for her so she’s not overwhelmed??

    Best wishes. You’re doing great!!
    Tammy P recently posted…Friendly Friday Blog-HopMy Profile

    • Well, I have to consider it. At this point, what’s left on the walls is the stuff that’s even too hard for me to get off without stripping the paint, but I can move forward on this for the next bit of mess, i mean artwork.

  11. Ai yi yi! I just saw this. I have nothing to add to the excellent advice other people have given, and maybe some compassion. Do post again to let us know how the day went though!

    *hugs*

    • We are surviving. We are kind of cracking down. It’s difficult to find something that works, but we do what we can!

  12. I have an almost 22-year-old son with Autism and I definitely remember those days. I had a therapist give me some advice a long time ago that worked for me and maybe you could try and see if it works for you. She told me to keep a notebook up on my counter and when my son had a tantrum about something or a less than ideal behavior, I needed to write down the less than ideal behavior, write down when it started, when it ended, and what made the behavior or tantrum stop.

    This process really opened my eyes that my son was a master of his world. A lot of times, the end result was that he would have my then husband and I arguing and my son would just go off and play. These kids are much smarter than we give them credit for sometimes and we need to remember that.

    Jane

    • Hi Jane, thank you – that is a great tip! I have to remember to try it. I don’t ever underestimate the intelligence of my children. Academics and development are only 2 ways to measure; contentedness, how they make themselves heard/known, and whether they can make their way through life (or a day) can show you things that test scores and bell curves never can.

  13. I have an almost 22-year-old son with Autism and I definitely remember those days. I had a therapist give me some advice a long time ago that worked for me and maybe you could try and see if it works for you. She told me to keep a notebook up on my counter and when my son had a tantrum about something or a less than ideal behavior, I needed to write down the less than ideal behavior, write down when it started, when it ended, and what made the behavior or tantrum stop.

    This process really opened my eyes that my son was a master of his world. A lot of times, the end result was that he would have my then husband and I arguing and my son would just go off and play. These kids are much smarter than we give them credit for sometimes and we need to remember that.

    Jane

  14. I feel your pain on this matter. Here’s what i have done with my 2 year old son. we have 2 boys with autism and i have had it with my youngest’s recent issues with no diaper, and peeing and pooping everywhere. he also tries to write on everything as well. he had the wonderful 6 month period of tantruming until vomitting on demand for 6 months. our behavior teacher suggested hand over hand ‘making him help clean up all the messes he makes”. this is very difficult as you can imagine but he has stopped vomitting for meltdowns. he graduated to hitting and pinching and pulling his diaper off to pee everywhere. so now i am putting him in a booster seat strapped into a chair with the feeding tray on it. i then show him time out visual card with whatever he did( like no hitting, kicking, throwing card) you get my drift. this is my new strategy. if he pees on purpose or accident i don’t get visibly angry and hand over hand make him clean it up. after a while of yelling, he stops and i trudge on. as far as the writing everywhere. i would suggest using your cam corder if you got one and record her. show her what is good behaviour. if you have a time out card use it and show her the card and print a card like no throwing. show her time out card then throwing so she understands why she is there. my son has a lot of sensory issues as well, but he has bad behaviors that need stopped now cause he is very strong and physical with us. that is my words of wisdom. also, no crayons or messy stuff unless you are watching her like a hawk.

  15. I feel your pain on this matter. Here’s what i have done with my 2 year old son. we have 2 boys with autism and i have had it with my youngest’s recent issues with no diaper, and peeing and pooping everywhere. he also tries to write on everything as well. he had the wonderful 6 month period of tantruming until vomitting on demand for 6 months. our behavior teacher suggested hand over hand ‘making him help clean up all the messes he makes”. this is very difficult as you can imagine but he has stopped vomitting for meltdowns. he graduated to hitting and pinching and pulling his diaper off to pee everywhere. so now i am putting him in a booster seat strapped into a chair with the feeding tray on it. i then show him time out visual card with whatever he did( like no hitting, kicking, throwing card) you get my drift. this is my new strategy. if he pees on purpose or accident i don’t get visibly angry and hand over hand make him clean it up. after a while of yelling, he stops and i trudge on. as far as the writing everywhere. i would suggest using your cam corder if you got one and record her. show her what is good behaviour. if you have a time out card use it and show her the card and print a card like no throwing. show her time out card then throwing so she understands why she is there. my son has a lot of sensory issues as well, but he has bad behaviors that need stopped now cause he is very strong and physical with us. that is my words of wisdom. also, no crayons or messy stuff unless you are watching her like a hawk.

    • Hi Heather, I so appreciate these tips! We try to police Zoe with crayons, pens and pencils, but she’s fast and there is more than one caregiver so it can be tricky. Where do I get time out cards?

      Yes, I like this idea of using pictures. It’s like what we’ve done in the past for food; now for behavior. And potty training (my least favorite thing to do.)

  16. you can use a number of picture exchange picutres free at do2learn.com check out our webpage on facebook if you have a facebook account. add me as a friend if you want. Heather Patricia Stafford. our support network is Ohio Valley Autism Network. We just got it up and running. if you can find a sit down picture on do2 learn just print and set it up. they have lots of no hitting, kicking ect on that site. i find it useful to keep the no kicking ect. velcroed all over my house so i dont even have to raise my voice just hand them the card and into time out

  17. It’s really awful to be unable to control your own child. But life is constant struggle and you must fight for the happiness of your family and of your daughter in particular. Never give up and your efforts will undoubtedly be crowned with success. Good luck!

    • Hi Helen, welcome! It’s not awful, it’s just…wearing. It wears me down 🙂 And I don’t want to control her, I want to teach her to want to behave properly. Because her brain works differently than mine, so it’s hard to understand what stresses her and what reaches her and so sometimes “control” is the best I can do. But yes, we must fight for the happiness and success of our children. Oddly MOST of that work is done by improving OURSELVES. (Learning that the hard way, lol!!)

    • Thanks Christy! It’s important to share hope with others so they don’t do anything desperate.

    • Thanks Judy! I’m glad to hear he’s doing well. I’m blessed that I live in a time and place where I have access to help and resources.

    • Now that is brilliant! Their wall writing days are behinds them now…wish I thought of it them!

    • Thank you Abi! That’s so encouraging. And good for you for helping that girl – our aides have been such a vital part of our lives all these years!