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ASD / PPDNOS Moms

JcrabJcrab
in Special Needs
My son was diagnosed with PPDNOS this week, the day before he turned three. I am curious how long it took for you to accept / process the diagnosis and what first steps were the most helpful for you and your family. Any particular books, websites or online groups that are particularly awesome?

I am not in denial, just really sad that my son and the entire family will always have to work harder. We have essentially no help, an almost six month old baby and I go back to work next week. Last December we got his CP diagnosis can we just skip 12/2013 please?
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Re: ASD / PPDNOS Moms

  • typesettypeset member
    Heh. We got the kid an autism diagnosis for his second birthday. That was less than a month ago. I had two cries in the shower, dropped ten pounds and many hours of sleep, and then busied myself with interviewing specialty service providers and riding herd on EI to get him therapy ASAP. ABA commences next week and I suspect it's all going to catch up to me. My husband is in the throes of denial, which is Not Helping. 

    The ladies here have recommended keeping a diary, a log of all the things you do toward helping your kiddo. Mine includes phone calls made to programs, notes from articles, etc. It's been immensely useful. I've also been blogging it out. I'm not wild about the organization, but the 100 days packet from Autism Speaks is a decent resource. Make copies of all the reports so you're not scrambling for them every time an agency or provider needs them. Better yet--scan them and make computer files. 

    Hugs to you, Mama. You're not alone. 
    Baby Birthday Ticker Ticker
    11/10/10 The Kid
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  • RdmaggieRdmaggie member

    DD doesn't yet have her Dx, but we know its coming...she will be 2 on the 23rd. We just got EI on board, and have an appointment for the 18th to write up her IFSP. We are waiting for Jan 17th to have her seen at the Behavioral Science Department of Childrens in Cincy. You could just write her name at the top of the "Red Flag List", what few things she didn't do initially she now does (spinning, watching only the wheels on cars, echolalia).

    I can't be much help, I'm right there where you are. I lean on my husband for support, but he is hurting as much as I am. I ended up having to go to the doctor myself. Initially I was hysterical, I cried every moment I was awake and woke up hourly at night getting sick. I still breakdown daily, and there are many days when I don't see how I can ever be happy again. But I am now able to eat, and I can compose myself in public, so babysteps, right?

    I did follow the advice that typeset mentioned and make a journal, it reminds me that I'm doing all I can for her. I also add any progress shes made, so I can have a visual reminder that she continues to learn and grow, albeit differently.

    Hugs to you

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  • Catch23Catch23
    Rdmaggie has shared a few things that her child does that led to the diagnosis spinning, echolalia, etc. Would anyone else care to share signs/symptoms their LO has that led to diagnosis? I am right now watching DD closely and trying to decide if she's just being 3, just being quirky or if it's something more. TIA so very much!
    One beautiful toddler and one beautiful baby.
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  • JcrabJcrab
    Thanks for all the thoughtful and kind replies, they are appreciated.

    Auntie I agree that it is definitely going to be a long constant process of acceptance and heart break rather than a single obstacle. I am not wishing away 2013, I know fighting for my son will be good for both of us and getting therapy started will be a huge step in the right direction. I was just wishing we aren't given any more big diagnoses.
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  • JcrabJcrab
    Catch 23: my son has been monitored closely since 1.5 years r/t developmental delays. He also had a lot of trouble transitioning from breastfeeding to bottle / foods, sensory aversions and is kinda stoic. His first developmental pediatrician team recommended that ABA might be helpful with my concerns that he doesn't follow commands well very temperamental and doesn't seem to understand safety dangerous to wander in parking lot. Another big thing was at his IEP meeting we were told his self care skills and social skills are still quite behind but his academic skills are at or above age level. Several days later we had his first "psych eval" with a separate developmental pediatrician and as we suspected / feared he qualified for PDDNOS.

    Since you have doubts I would definitely talk to your pediatrician and try to get a formal evaluation. Knowledge is power in the end. Good luck!
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  • Catch23Catch23
    Jcrab thanks so much for your response. It is greatly appreciated.

    I wish nothing but great things for you and your family for 2013. esp 12/13!

    One beautiful toddler and one beautiful baby.
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