Moms of Autistic Children

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  • perfectingpatti
    perfectingpatti Posts: 1,037 Member
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    While I know you're probably upset that he has autism, I'm glad to hear he is getting help at such a young age!
  • diadojikohei
    diadojikohei Posts: 732 Member
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    My little boy was diagnosed at 2 and a half, it meant he got the help he needed and in the UK if you have a statement of educational needs you (the parent) gets to chose which school you want your child to go to. He is just 13 now and he has done well at school, and had some nice friends. He is very nerdy, and doesn't speak much, but most of the time he seems happy in himself and calm which is what we want for all of our children.

    We had horrible times too, like when one of the mums went into school and said she didn't want her child playing with my son (like autism is contagious!) I had a long talk with the special needs co ordinator who's daughter is also autistic and she gave me the best advice ever.

    People are bigots- get a tough skin.

    Since then I try not to let what others say bother me as much. I hope you don't get this in your journey.
    xxx
  • lissamia4
    lissamia4 Posts: 90 Member
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    My daughter was diagnosed at 1 /12 years old. The doctors suggested she needed to get tested mostly cause of her not speaking. But we they came to evaluate her they saw she lacked in alot if areas. She flaps alot and goes off In her own little world. So they gave early intervention. They wanted to put we in a disability school right away but my fiancé and I didn't feel comfortable with that. So every day a teacher would come and work with her. My daughter is 5 now and she is just starting to talk now. Some of the concerns now and just minimal. But they still say mind set is still about a year and half behind.

    It's a long road with lots of ups and down. But once you see how much progress they make its a great feeling. Message me if you need someone to talk to.
  • dolly3186
    dolly3186 Posts: 81 Member
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    My daughter was diagnosed at 1 /12 years old. The doctors suggested she needed to get tested mostly cause of her not speaking. But we they came to evaluate her they saw she lacked in alot if areas. She flaps alot and goes off In her own little world. So they gave early intervention. They wanted to put we in a disability school right away but my fiancé and I didn't feel comfortable with that. So every day a teacher would come and work with her. My daughter is 5 now and she is just starting to talk now. Some of the concerns now and just minimal. But they still say mind set is still about a year and half behind.

    It's a long road with lots of ups and down. But once you see how much progress they make its a great feeling. Message me if you need someone to talk to.

    That's so awesome that your daughter is starting to speak! That's the one thing I want SO BADLY for my son. I just want him to say ONE THING...anything!!

    We have him starting an intensive home based therapy incorporating some ABA and also a Floortime/Early Start Denver Model approach.

    Does anyone have any opinions on the different therapies available, (ABA, Floortime etc.?) I've researched them, but I'm interested in hearing what types of therapy did or didn't work for anyone.

    I know ABA is the "gold standard" that is recommended, but my son is currently getting Floortime and seems to be doing well with it. Anyone care to chime in here?
  • SoViLicious
    SoViLicious Posts: 2,633 Member
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    My son is four yars old. He was diagnosed at three with PDD-NOS. He is currently attending pre-K for early intervention. It has been working. He went from barely speaking and now he speaks! He has also had occupational and speech therapy.
  • SoViLicious
    SoViLicious Posts: 2,633 Member
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    You know, everyday is a blessing with my son. When I found out he was on the spectrum, I was not sure how to react. I felt lost. I was angry and wanted to know why of all people my child has to have it. I was pregnant with him around the same time that three other people I knew were pregnant. I notice something was off with Shane when he turned four months. He would stare off into space and did not babble. As he got older he spoke early, walked at 10 months. He was able to memorize everything, yet could not respond to hi how are you. He did interact with people but it was very robotic, as though he was following a script. Around 15 months he stopped eating and would only eat cheese sandwiches.

    I was told that he was spoiled, that my husband and I were making meal time too much of a big deal, and that he was seeking attention. He would not sit still and was always on the go. I remember going to the park wondering "Why can't he play? Why do he keep running away?" We stopped going out and to church. I started researching online. Looking up youtube videos. I became obsessed and was sure he had autism. My husband for a while did not believe me.

    It was not until his second birthday that my husband saw what i saw. We had my son's party at my sisters house in NJ. We had always had carpets in my home, so my son became obsessed with my sisters hardwood floors. He spent the entire party on the floor lining his toy cars in a perfect line next to his face. Finally with my husband on board we made the calls. ( Just to let you all know, I had already been speaking to people about my sons behavior without my husband knowing. I had a feeling something was not right and was not going to ignore it even if hubby did not feel the same).
    He was diagnosed with a speech and developmental delay.

    At three he was diagnosed fully.

    Most days we don't even think about his Pdd. He is very mild on the spectrum. The worse days are when we remember and it knocks the wind out of your sails because you know he will always have this.
    I thank God for my son, because I celebrate him and my daughter all the time. We celebrate little things! A friend of mine had her daughter diagnosed with Leukemia on her fourth birthday. I said a little prayer because God spared us.
  • dolly3186
    dolly3186 Posts: 81 Member
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    You know, everyday is a blessing with my son. When I found out he was on the spectrum, I was not sure how to react. I felt lost. I was angry and wanted to know why of all people my child has to have it. I was pregnant with him around the same time that three other people I knew were pregnant. I notice something was off with Shane when he turned four months. He would stare off into space and did not babble. As he got older he spoke early, walked at 10 months. He was able to memorize everything, yet could not respond to hi how are you. He did interact with people but it was very robotic, as though he was following a script. Around 15 months he stopped eating and would only eat cheese sandwiches.

    I was told that he was spoiled, that my husband and I were making meal time too much of a big deal, and that he was seeking attention. He would not sit still and was always on the go. I remember going to the park wondering "Why can't he play? Why do he keep running away?" We stopped going out and to church. I started researching online. Looking up youtube videos. I became obsessed and was sure he had autism. My husband for a while did not believe me.

    It was not until his second birthday that my husband saw what i saw. We had my son's party at my sisters house in NJ. We had always had carpets in my home, so my son became obsessed with my sisters hardwood floors. He spent the entire party on the floor lining his toy cars in a perfect line next to his face. Finally with my husband on board we made the calls. ( Just to let you all know, I had already been speaking to people about my sons behavior without my husband knowing. I had a feeling something was not right and was not going to ignore it even if hubby did not feel the same).
    He was diagnosed with a speech and developmental delay.

    At three he was diagnosed fully.

    Most days we don't even think about his Pdd. He is very mild on the spectrum. The worse days are when we remember and it knocks the wind out of your sails because you know he will always have this.
    I thank God for my son, because I celebrate him and my daughter all the time. We celebrate little things! A friend of mine had her daughter diagnosed with Leukemia on her fourth birthday. I said a little prayer because God spared us.

    THanks for your story. :) That's so great that your son is mild on the spectrum. It's too early to tell where my son will be, but I'm hoping he will make great progress. I'm really struggling with trying to decide which type of therapy is best for him...ABA/Floortime/Early Start Denver Model...did you use any of these therapies with your son?
  • SoViLicious
    SoViLicious Posts: 2,633 Member
    Options
    You know, everyday is a blessing with my son. When I found out he was on the spectrum, I was not sure how to react. I felt lost. I was angry and wanted to know why of all people my child has to have it. I was pregnant with him around the same time that three other people I knew were pregnant. I notice something was off with Shane when he turned four months. He would stare off into space and did not babble. As he got older he spoke early, walked at 10 months. He was able to memorize everything, yet could not respond to hi how are you. He did interact with people but it was very robotic, as though he was following a script. Around 15 months he stopped eating and would only eat cheese sandwiches.

    I was told that he was spoiled, that my husband and I were making meal time too much of a big deal, and that he was seeking attention. He would not sit still and was always on the go. I remember going to the park wondering "Why can't he play? Why do he keep running away?" We stopped going out and to church. I started researching online. Looking up youtube videos. I became obsessed and was sure he had autism. My husband for a while did not believe me.

    It was not until his second birthday that my husband saw what i saw. We had my son's party at my sisters house in NJ. We had always had carpets in my home, so my son became obsessed with my sisters hardwood floors. He spent the entire party on the floor lining his toy cars in a perfect line next to his face. Finally with my husband on board we made the calls. ( Just to let you all know, I had already been speaking to people about my sons behavior without my husband knowing. I had a feeling something was not right and was not going to ignore it even if hubby did not feel the same).
    He was diagnosed with a speech and developmental delay.

    At three he was diagnosed fully.

    Most days we don't even think about his Pdd. He is very mild on the spectrum. The worse days are when we remember and it knocks the wind out of your sails because you know he will always have this.
    I thank God for my son, because I celebrate him and my daughter all the time. We celebrate little things! A friend of mine had her daughter diagnosed with Leukemia on her fourth birthday. I said a little prayer because God spared us.

    THanks for your story. :) That's so great that your son is mild on the spectrum. It's too early to tell where my son will be, but I'm hoping he will make great progress. I'm really struggling with trying to decide which type of therapy is best for him...ABA/Floortime/Early Start Denver Model...did you use any of these therapies with your son?

    ABA is not covered by most insurances. What we did was read about it and incorporated the positive reinforcement aspect of it. My son had certain behaviors that he has grown out of. Such as, spinning, arm flapping, running objects near his eyes close to his face, and grunting. Now he constantly need something in his hands, and he will sometimes make wiered noises. My son receives SSI medicaid. As long as he receives $1.00 he will have the medicaid. Which is helpful because we barely qualified for the SSI in the first place. He sees his speech and occupational therapist twice a week. He also gets them both in school. We did floor-time with him. What we do with Shane is let him explore the world. When we go to new places he has to explore. If we hold him down then he will have a melt down. So we explore with him. We urge him to ask questions. We play a lot in my home.

    It does become overwhelming because, everything is a teachable moment. Sometimes it feels like we are constantly teaching him about life. Sometimes we just go to the park and just walk and not say a word only to disconnect from the constant teaching. We have to teach him how to take in the world around him. My husband and I also spend a lot of time observing both of our children. We look for their triggers and try to avoid them, but most importantly we are trying to show Shane and his sister (Who is not on the spectrum) how to cope on their own.

    Every few months we have to change it up.

    It is a lot of hard work, but you can do it.
  • Cmh1211
    Cmh1211 Posts: 104
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    I read every post on every page and it is amazing to hear such similar stories to my own. I have a 3 1/2 year old daughter tht has pdd. She is my right hand gal and my best friend. She has taught me to be a great father and an even better friend. We, as parents have lots to learn from such an amazing group of children that perceive the world in such a fascinating way. Autism to me has just been a new character trait my daughter has. Like saying she has light brown hair or beautiful brown eyes. There is a huge difference from having an autistic child or having a child with autism. You learn the difference with time. Although it took 3 years to diagnose, my wife and I knew in the back of our minds all along. It is a shame we waited in the same denial as dr's and family. It's actually my biggest regret in life. We should have gone with our gut instinct and gotten her help earlier. Learning "more" can never cause any harm.

    Proudest moment was putting my daughter to bed she had bullseye in one hand and woody in the other (toy story). I went to take bullseye away because he has plastic feet and didn't want her to fall asleep on top of them. She reached out to me and said " no I need that ". Needless to say it took my breath away. It had a bigger effect on me then her doctor giving me her diagnosis. I will remember that moment forever and it will carry me on this asd journey with a smile on my face.

    Good luck on all your journeys, and u guys should change the thread title to "parents of children with autism". My daughter isn't autistic she has autism and I'm not a mom . Lol
  • Azexas
    Azexas Posts: 4,334 Member
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    I know the topic is "moms of autistic Children", however I am not a mom. I am a nurse working with Adults with developmental disabilities. I work in a few group homes for a non for profit agency in NY. If you ever need someone to talk to, or have any questions I will be glad to try and help you. Send me a FR if you would like.
  • MizTerry
    MizTerry Posts: 3,763 Member
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    My middle girl has Aspbergers, a high functioning form of autism. She was slow to speak and slow to walk, but we didn't rush her. See, she also had an older sister to do all her talking for her so we figured she didn't need to.

    Anyhow, it really showed when she was in grade school and couldn't speak that well. She had to go through speech therapy, then the bullying from other kids began. Sheesh...kids...anyhow, we got her in to see a psychologist, and it worked wonders. She can be loud sometimes (part of her condition), but she can function fairly normally. She's in high school now and has a boyfriend.

    Some kids are still ugly to her, but she's pretty grounded in that she doesn't give a rats rear end what they think of her.
  • Mrder37
    Mrder37 Posts: 904
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    I'm a single dad both my kids have autism my girls 12 and my wee boys 5 he is more severe I had to fight hard to get him in to the best school my girl was diagnosed late so we are getting there the 3 of us have a great bond and my wee boy even thou he has no speech is starting to really show emotion with me which is worth a billion pounds :)
  • JanieJack
    JanieJack Posts: 3,831 Member
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    15 months seems a little early to me... and even if he is autistic "diagnosis" can be a mixed blessing: IEP and assistance is good, but limiting him in a "box" early on might clip his wings too.

    My best friend runs a blog about being Aspie and about her aspie son. She doesn't post as often anymore, but she's left her old stuff up and for those parents out there with kids on the spectrum, her blog can give you insight into what it's like:

    http://savedaspie.blogspot.com/
  • dolly3186
    dolly3186 Posts: 81 Member
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    I read every post on every page and it is amazing to hear such similar stories to my own. I have a 3 1/2 year old daughter tht has pdd. She is my right hand gal and my best friend. She has taught me to be a great father and an even better friend. We, as parents have lots to learn from such an amazing group of children that perceive the world in such a fascinating way. Autism to me has just been a new character trait my daughter has. Like saying she has light brown hair or beautiful brown eyes. There is a huge difference from having an autistic child or having a child with autism. You learn the difference with time. Although it took 3 years to diagnose, my wife and I knew in the back of our minds all along. It is a shame we waited in the same denial as dr's and family. It's actually my biggest regret in life. We should have gone with our gut instinct and gotten her help earlier. Learning "more" can never cause any harm.

    Proudest moment was putting my daughter to bed she had bullseye in one hand and woody in the other (toy story). I went to take bullseye away because he has plastic feet and didn't want her to fall asleep on top of them. She reached out to me and said " no I need that ". Needless to say it took my breath away. It had a bigger effect on me then her doctor giving me her diagnosis. I will remember that moment forever and it will carry me on this asd journey with a smile on my face.

    Good luck on all your journeys, and u guys should change the thread title to "parents of children with autism". My daughter isn't autistic she has autism and I'm not a mom . Lol

    I'm the one that originally started this thread last year. My son will now be 2 in May and he does have an official autism diagnosis. He isn't speaking yet, but has already learned so much now that we have tons of therapies in place for him.

    I loved your post, the part about the toys in bed...oh, my gosh! Tears, seriously. That's beautiful. It's amazing the little things you remember forever.

    My son had a sort of similar moment recently. He has never once asked me for anything (by speaking or otherwise, he just screams and cries.) One night, a few months ago he grabbed his empty sippy cup, brought it to my lap, pointed at it and signed "more." I was floored.

    As for the title - I'm sorry!! Does anyone know how i can edit the title?? Of COURSE I want parents of children with autism...not just moms! :):):) Everyone is welcome!

    I'm so, so, so glad to see that this thread has picked up again. I love hearing everyone's stories and moments of accomplishment.
  • nancycaregiver
    nancycaregiver Posts: 812 Member
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    I am a preschool special Ed teacher and I would like to offer one word of advice. Be your child's advocate. I have dealt with parents who sit in the meeting and don't ask questions or ask for services. That drives me crazy! But I think they are overwhelmed and afraid to come off as pushy or obnoxious. I've also had parents who come to meetings asking for everything they can think of. Even if the parent wants a service that I don't think will be beneficial to the child at all, I still respect that parent who wants to exhaust every option to help their child! Don't ask yourself one day years from now,"Why didn't I ask for that?" Stand up for your child and even if the doctor, interventionist or school system balk, insist. And if that idea doesn't work, look for something else and push for it. Try everything you can.
    And like everyone else said, early intervention is a good thing. I mean, even if it turns out your child is not autistic, what is the harm of receiving services. All she can do is improve!!

    Oh yeah! And I saw someone earlier mention Temple Grandin. She is AWESOME! She is an adult woman who was diagnosed with autism as a child in the 60's and her mother pushed for services before school systems were mandated to provide services. I went to a conference where she was the speaker and then met her afterward. She is extremely intelligent but pretty quirky. There is a movie called Temple Grandin about her life. One of my favorite movies ever!!