Moms of Autistic Children

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  • SarahCW1979
    SarahCW1979 Posts: 572 Member
    ^^ Thank you for the above post ^^ It's really encouraging to read as it gives me hope that one day my son will have what you have. Thank you again!

    No problem. I know my mother would have greatly valued this kind of story when she was struggling with me 20 years ago, as there wasn't much info about it at all in the early 1990s. I was hell to raise too. The Ritalin did NOT help. So if they try giving your child ADHD meds, you may wanna skip that. Made me really aggressive.

    This happened to my son, he was diagnosed with Autism at 3 years old, when he was 6 they decided to try him on Ritalin, it made his already explosive temper absolutely VOLCANIC!

    To the OP, I knew when my son was 9 months old that there was something amiss. Both of my older brothers are autistic so I guess I just saw the signs. Although he made eye contact and smiled he preferred to be left alone on the floor by himself. He slept through the night from 4 weeks and needed very little attention (there we were thinking we had a really 'easy' baby!) I agree with the other posters, an early diagnosis is best. Dont worry too much for now, enjoy him still being a toddler. Some days will be challenging but I like to look at it as getting the best of both worlds! Just remember, special kids get given special mommies for a reason :flowerforyou:
  • jogo8995
    jogo8995 Posts: 75 Member
    You forgot to mention the part that it felt just like they kicked you in the stomach when they said the word autism. That was my story exactly. There is tremendous hope! My son is 17 years old in 11th grade in regular high school getting A's and B's.Over the years, I tried to avoid labels but accept ALL help that was offered. My son qualified for special preschool through the public school. I put my pride aside and took the help. We did speech therapy at home. We paid a professional once a week and I watched what she did and repeated it each day with my son until she came the next week. We were blessed with wonderful teachers over the years that worked closely with me to make modifications and find what would WORK for my son. You are the best advocate for your son.My son taught me to appreciate and celebrate the little successes in life, the ones that are so easy to take for granted. There is a lot more help out there these days. We never did get a diagnosis. (probably Aspergers or somewhere on the spectrum)We just worked on whatever was the biggest problem at hand and made it as manageable as possible. There is tremendous hope!
  • Angie_1991
    Angie_1991 Posts: 447 Member
    I don't not have an Autistic child, but would love to help give support......
  • dolly3186
    dolly3186 Posts: 81 Member
    You forgot to mention the part that it felt just like they kicked you in the stomach when they said the word autism. That was my story exactly. There is tremendous hope! My son is 17 years old in 11th grade in regular high school getting A's and B's.Over the years, I tried to avoid labels but accept ALL help that was offered. My son qualified for special preschool through the public school. I put my pride aside and took the help. We did speech therapy at home. We paid a professional once a week and I watched what she did and repeated it each day with my son until she came the next week. We were blessed with wonderful teachers over the years that worked closely with me to make modifications and find what would WORK for my son. You are the best advocate for your son.My son taught me to appreciate and celebrate the little successes in life, the ones that are so easy to take for granted. There is a lot more help out there these days. We never did get a diagnosis. (probably Aspergers or somewhere on the spectrum)We just worked on whatever was the biggest problem at hand and made it as manageable as possible. There is tremendous hope!

    Oh, my gosh, when I heard the word autism from someone else I felt like I was literally dying. It's like the whole world stopped moving for what seemed like forever. I just...sat there. And stared at this woman who was saying this to me. I will never forget that moment for as long as I live. I swear the air went out of the room.
  • perfectingpatti
    perfectingpatti Posts: 1,037 Member
    What do y'all think of the DSM wanting to do away with the diagnosis of AS and PDD? I know the aspie community is very upset about it.
  • Justa_Paperbag
    Justa_Paperbag Posts: 59 Member
    My son was diagnosed at 14 months. Typically, they don't diagnose that early, but my step-son is also on the spectrum and because my son has a half sibling with ASD, they were able to diagnose him that early. Most places don't give a formal diagnosis until 2 or 3, I believe. My son just turned 3 last week, and is a different child. We still have struggles, but everyone is amazed at how far he's come.

    For what it's worth, most EI doesn't start for speech until 18 months, so you're fortunate to have him in early there, too. The earlier the better, for all EI therapies, is my personal opinion.

    The word autism is a kick in the gut, because it's so misunderstood. And I'll be honest - it's hard. Some days, it sucks. I have a beautiful, happy, sweet, funny, silly, smart little boy who happens to be autistic - it's part of who he is, but doesn't define him as WHO he is.

    Some of the things you mentioned sound sensory in nature to me. A lot of times, there are sensory issues that go along with autism that are also red flags, but sensory processing disorder can also be a stand alone diagnosis - have you ever done any reading into that? The Out of Sync Child is a great book to gain some insight.

    Also, has he been tested for any kinds of food intolerance? There's a lot of research on the "autism diet" which is gluten and casein free. Not all kids on the spectrum have an intolerance, and my own son is only intolerant to casein, but he had a language surge after eliminating all of the casein in his diet. I'm not saying that removing something will make your son suddenly more verbal, but it might be something to at least research if there are any bowel problems.

    It's overwhelming and can feel isolating and scary. I understand all of that, trust me, I do. At the end of the day, just know that giving your son the help he needs, regardless of what that might be, is worth it. You're a good mom. <3
  • prjoy98
    prjoy98 Posts: 250 Member
    My step son is a 10yr old Aspie with Anxiety but his mom has done nothing to help him be self sufficient. My husband and I are trying to do everything within our reach to help him succeed but when we only have him every other weekend it is a bit difficult. I am currently at work but will definitely be coming back to read and engage in the conversation later tonight.
  • I'm struggling with some of the same things. My daughter is 34 months and she has delayed speech. She was diagnosed with speech delay in March but I already knew it. She started talking right on track, she just didn't pick up on new words as fast. She tends to learn them use them constantly for a few days or weeks and then won't use them at all. She has yet to put together a two word sentence, other than to repeat "That's you" when she points at pictures of herself. She picked that up because she would point at pictures and we would tell her who they were. When it was her, we would say, "That's you." She won't use words to communicate at all unless we remind her. She'll point and grunt or scream and I'll prompt her with "do you want the book?" and she'll say, "book". Repetition is her key. There are days that I read the same book 100+ times. Because that's what she wants and eventually she will try to say some of the words along with me. We are working with baby sign language videos and she enjoys them and will sign. But, I have to remind her to sign as well as use her words. Unless it's "more" she'll sign that almost anytime she wants more without prompting. We have pictures of different foods taped all over the front of our refrigerator and encourage her to point at things she wants. That helped to start with quite a bit with her frustration and with ours. Now she just opens the door and grabs what she wants. Which doesn't help MY frustration one bit but fixed hers completely.

    The speech delay is frustrating and worries me constantly, but the worst part is the tantrums. She throws violent tantrums when she is frustrated. She'll bang her head into the wall or whatever else is handy. She's broken her crib. I've had numerous busted lips and 1 black eye from trying to keep her from hurting herself.

    I guess my point is... you are not alone... don't feel alone. Just take things one day at a time. So many people have asked me if she's been tested or ask what the doctor said. He told me she would grow out of it...the tantrums that is. I'm working with her daily and she is improving on speech. They did not recommend early intervention for her, yet. They are going to re-evaluate when she turns three. I guess we'll see. The tantrums, speech delay and she does flap her hands but only when she's excited.. are the symptoms that she has. I am stuck in the wait and see phase. Right now they don't believe she's on the spectrum but they honestly aren't sure. She's up to around 175 words.. if only she would use them.
  • Justa_Paperbag
    Justa_Paperbag Posts: 59 Member
    I was thinking too, and your speech therapist might be doing something like this, but visuals were really helpful for my son (and my daughter, who had problems with her speech). We'd laminate pictures of things and put velcro on the backs, then we had a board where they could choose what they wanted. We had a picture of the sign "I want" and then the picture of the food/snack/drink. It really helped us out a lot. We also had binky and lovey and bottle on my son's, as well as books, and favorite toys and tv characters (we gave him the choices, so it wasn't like he was calling all the shots, lol). We would sign "I want" while saying "I want" and then if I knew the sign for the food, I'd sign that, too. When I had signed to me, "I want more fish crackers, please" to me one day for the first time, instead of using the picture choices, it was the same amount of emotion that I felt when I had words spoken to me. It gave him a voice - and it helped tremendously.
  • Justa_Paperbag
    Justa_Paperbag Posts: 59 Member
    So many people have asked me if she's been tested or ask what the doctor said. He told me she would grow out of it...the tantrums that is. I'm working with her daily and she is improving on speech. They did not recommend early intervention for her, yet. They are going to re-evaluate when she turns three. I guess we'll see. The tantrums, speech delay and she does flap her hands but only when she's excited.. are the symptoms that she has. I am stuck in the wait and see phase. Right now they don't believe she's on the spectrum but they honestly aren't sure. She's up to around 175 words.. if only she would use them.

    My best advice as someone who KNEW something was off with my child, but was brushed off by our pediatrician is to get another opinion. You're mom, and you know best - if your gut is saying something is up, then pursue it. My son throws horrendous tantrums (and has hurt himself numerous times - it's awful, isn't it? Knowing they're upset about something so much and you don't know WHAT). A lot of what you're describing sounds sensory to me - hand-flapping, head-banging, and all. A lot of doctors don't understand sensory issues because it's not yet outlined in the DSM (in the next revision, I believe it will be). I'm not a sensory pusher, honest, even though it might seem that way from my comments, it's just that having gone through it with my own child, I know I didn't know anything about it and had never heard of it before, and I find so many people with kids who have sensory issues that can be worked through and can be life-changing. If you don't know about them, I recommend The Out of Sync child, or even just googling sensory processing disorder. It's really helped us tremendously to address sensory issues - his tantrums have decreased, and we're more aware of what he needs and how to help him. It also helped us to see more speech and to have him USE his words (which we knew he HAD, he just wasn't using).
  • dolly3186
    dolly3186 Posts: 81 Member
    My son was diagnosed at 14 months. Typically, they don't diagnose that early, but my step-son is also on the spectrum and because my son has a half sibling with ASD, they were able to diagnose him that early. Most places don't give a formal diagnosis until 2 or 3, I believe. My son just turned 3 last week, and is a different child. We still have struggles, but everyone is amazed at how far he's come.

    For what it's worth, most EI doesn't start for speech until 18 months, so you're fortunate to have him in early there, too. The earlier the better, for all EI therapies, is my personal opinion.

    The word autism is a kick in the gut, because it's so misunderstood. And I'll be honest - it's hard. Some days, it sucks. I have a beautiful, happy, sweet, funny, silly, smart little boy who happens to be autistic - it's part of who he is, but doesn't define him as WHO he is.

    Some of the things you mentioned sound sensory in nature to me. A lot of times, there are sensory issues that go along with autism that are also red flags, but sensory processing disorder can also be a stand alone diagnosis - have you ever done any reading into that? The Out of Sync Child is a great book to gain some insight.

    Also, has he been tested for any kinds of food intolerance? There's a lot of research on the "autism diet" which is gluten and casein free. Not all kids on the spectrum have an intolerance, and my own son is only intolerant to casein, but he had a language surge after eliminating all of the casein in his diet. I'm not saying that removing something will make your son suddenly more verbal, but it might be something to at least research if there are any bowel problems.

    It's overwhelming and can feel isolating and scary. I understand all of that, trust me, I do. At the end of the day, just know that giving your son the help he needs, regardless of what that might be, is worth it. You're a good mom. <3

    Thank you so much for this post! You seem to be full of information. I really, really appreciate it...more than you'll know. It's nice to hear that I'm a good mom (even though I don't know you in person!) from someone. I hear it at home, and i know I am one...but I always feel like there's more I can do with him and I get down on it sometimes.

    It's really hard because I work full-time so I can't work with him as much as I would like. I'm doing the best I can for now.

    As for the sensory issues - that's funny you mentioned that. My son has a ton of sensory issues with touch and with his mouth. He was biting for months...not out of anger, just to feel something in his mouth. That has thankfully slowed down. He still touches everything and I mean EVERYTHING. He loves crunchy items...crackers, leaves that crackle...he also loves small pieces of string and anything that hangs down. He's currently obsessed with the strings from our blinds. I have to make sure I tie them up or he will mess around with them all day if I let him. Other things such as shoelaces, carpet fibers...strange things. (Well, strange to me, I guess...not so much to him.)

    We do have a sensory specialist coming in next Monday to start working with him. She's supposed to be very good. From what i understand she is going to bring in different textures...differently textured toys, balls etc. to get him used to other things. I'm not too familiar as I've never even heard of anything about a sensory disorder before.

    Thanks for the info about the special diet. My son has been off of casien for a few months now. He never tolerated milk well and couldn't even have cow milk formula as a baby. We had to special order formula for him as an infant because he would get sick off of regular formula.

    I haven't noticed much of a change in his behavior, but taking milk and dairy out of his diet has for sure helped with his extreme diarrhea. He had horrible constant diarrhea from about the time he turned 12 months old. He was constantly having awful diaper rash and no matter how quickly I cleaned him off he would get it. Now that the dairy is gone at least that problem was eliminated.
  • Justa_Paperbag
    Justa_Paperbag Posts: 59 Member
    You're welcome - it's HARD to be the mom of a child who is special needs - regardless of what those needs are. Being different is hard - and it's really easy to feel alienated when your child isn't doing something that all the other kids are doing. You have that moment of "why me" and feel guilty for it, because it could be way worse, but it's hard to remember that it's OKAY to feel bad for yourself sometimes, and it doesn't make you any less of a parent. I've been there. I go through it frequently. Sometimes you just need to hear that doing the best you can is enough - and doing anything at all makes you a good mom. You could be sticking your head in the sand, like a lot of parents do, while their child continues to struggle. Knowing there's a problem that you can't solve yourself really shows that you love your son and want what's best for him. Message me any time - I've been around the block with this, and I'd love to help if there's anything I can do.

    Check into chewy tubes - they're great! They even have ones that clip onto zippers etc. My son would only eat crunchy food for the longest time, and sensory issues have been sorting out and he's able to tolerate other textures of food, which is great! We use a brush and compressions with my son and they help a lot, too http://www.youtube.com/results?search_query=sensory+brushing+compressions&oq=sensory+brushing+compressions&gs_l=youtube.3...389.4151.0.4232.29.22.0.5.5.0.128.1871.17j5.22.0...0.0...1ac.1.3jb_z_mFl38

    There are tons of things you can have your son do that are fun, that will help with sensory integration, too. If you're on Pinterest, see if you can search around and find things. I have a bunch of things pinned that we have been trying. I try to incorporate a sensory activity into play because it's fun, and it helps! We do a lot of shaving cream painting, which is fun and messy, but he LOVES it and it's really helped us. He also really likes hair gel in a ziplock bag, that's taped down to a table to paint with - he loves to paint, but doesn't like to get dirty, so this gives him the ability to feel a different texture without getting dirty.
  • Justa_Paperbag
    Justa_Paperbag Posts: 59 Member
    http://out-of-sync-child.com/

    And if you can afford to buy the book, it was the best money I ever spent. I'm going to be purchasing some of the other ones, too, because it was a really enlightening read. I felt like I finally understood my kid after reading it.

    If you're dealing with tantrums, something I noticed that helped was deep breathing. Sounds silly, but kids will often mimic you, so if you start breathing **iiiiinhaaaale* *exxxxhaaaale** with a calm look, they will often copy that. Since he's not verbal, it might be a great coping technique. We also use counting and singing and the alphabet now, but my son "loses" his words when he's upset, so he doesn't always do it with me. But, if *I* am the one doing it, it will often calm him down. Is he into music? Laurie Berkner is invaluable to us - we sing Laurie Berkner songs all of the time (and actually, when my son's sensory issues were OFF THE CHART when he was wee little, "The Goldfish" song calmed him down when nothing else would). Also, her videos (she has 3 dvds out) are high motion and colorful, along with the music, and they will calm him down when nothing else will, too.
  • trackercasey76
    trackercasey76 Posts: 780 Member
    My Nephew has Autism and is one of the coolest kids I know!! He just doesn't talk much or deal with loud noises and change well. My brother finds it offensive when people refer to him as "Autistic" because that is not who he is, he is a smart , caring, Handsome young man that happens to have a disorder. Much like you don't say "that is a downs syndrome" no that is a child that has down syndrome they are not the disorder.

    The schools today are so much better equipped to deal with children with autism and know how to teach them in a manner that they will learn and advance in much the same way as the rest of the students. Early diagnosis is paramount in getting the best plan in place for YOUR CHILD because every child is different in their individual needs.
  • dolly3186
    dolly3186 Posts: 81 Member
    http://out-of-sync-child.com/

    And if you can afford to buy the book, it was the best money I ever spent. I'm going to be purchasing some of the other ones, too, because it was a really enlightening read. I felt like I finally understood my kid after reading it.

    If you're dealing with tantrums, something I noticed that helped was deep breathing. Sounds silly, but kids will often mimic you, so if you start breathing **iiiiinhaaaale* *exxxxhaaaale** with a calm look, they will often copy that. Since he's not verbal, it might be a great coping technique. We also use counting and singing and the alphabet now, but my son "loses" his words when he's upset, so he doesn't always do it with me. But, if *I* am the one doing it, it will often calm him down. Is he into music? Laurie Berkner is invaluable to us - we sing Laurie Berkner songs all of the time (and actually, when my son's sensory issues were OFF THE CHART when he was wee little, "The Goldfish" song calmed him down when nothing else would). Also, her videos (she has 3 dvds out) are high motion and colorful, along with the music, and they will calm him down when nothing else will, too.

    I'm going to check around on Pinterest for some ideas. I didn't even think of that! I'm a Pinterest junkie! Lol! :)

    My son absolutely LOVES music. If he's having a bad temper tantrum, if I start just bursting out singing that'll usually calm him down. He loves music and will usually laugh and giggle right away. I'm going to check out those videos you mentioned. Thank you!

    All this information on here has been so valuable to me. I really, really appreciate it!
  • ellenxmariex3
    ellenxmariex3 Posts: 165 Member
    Have you thought about getting an assessment done by a speech therapist? A speech therapists cannot/is not supposed to diagnose autism but their assessment could help you with some strategies to promote language and verbalization.

    My brother is special needs. He has cerebral palsy. He was never formally diagnosed with autism but he exhibits many of the behaviors and my parents/his doctors use many of the therapies for autism with him.

    He started seeing his private speech therapist at around 2. He was nowhere near speaking at that point. She helped develop a communicative aid for him. It was just a little book with pictures of various things (food, bed, ect) that he could point to to get his needs/wants across. He also began learned sign language, which he still uses occasionally today. He began really speaking at age 5. He now has a verbal age of about 2.5 years old, a drastic improvement.


    That story about the autistic teen was so nice! My brother just graduated from high school at age 21. He had the time of his life. His classmates were very supportive. They would give him high fives, something he loves, in the hallway when he passed them. I didn't go to that high school but whenever I saw someone from it they would always talk about how much they loved my brother and how awesome he was. They gave him and the one other handicapped student who graduated a standing ovation at their graduation! I totally admit that I cried when that happened.
  • oops
  • A lot of what you're describing sounds sensory to me - hand-flapping, head-banging, and all. A lot of doctors don't understand sensory issues because it's not yet outlined in the DSM (in the next revision, I believe it will be). I'm not a sensory pusher, honest, even though it might seem that way from my comments, it's just that having gone through it with my own child, I know I didn't know anything about it and had never heard of it before, and I find so many people with kids who have sensory issues that can be worked through and can be life-changing. If you don't know about them, I recommend The Out of Sync child, or even just googling sensory processing disorder. It's really helped us tremendously to address sensory issues - his tantrums have decreased, and we're more aware of what he needs and how to help him. It also helped us to see more speech and to have him USE his words (which we knew he HAD, he just wasn't using).


    Thanks! I will certainly check into it.
  • contingencyplan
    contingencyplan Posts: 3,639 Member
    My mom tells me it was pretty obvious with me beginning at around a year old. I wasn't nonverbal, but I would go days at a time without speaking until I was in like 3rd or 4th grade. I still do hand-flapping, rocking, and other forms of stimming.
  • karylee44
    karylee44 Posts: 892
    i have had two of my kids tested for autism. my oldest son is 14 and diagnosed with pdd-nos. i have to say.. he has come a LONG way and even though we have all the teenage crap to deal with now.. he has friends, he is social, and alot of his weird ways (circling, hiding, lining things up) have mostly gone away.

    my younger boy didnt talk, or have eyecontact at all as a baby.. didnt like to be touched and had all the flags.. he was in early intervention and we taught him to use sign language at an early age to help communicate. he is now very smart, straight A student.. has friends (although not alot) and does very well.

    early intervention is the key for sure.. feel free to pm me or friend me or both.