Desperate plea for comfort — The Bump
Special Needs

Desperate plea for comfort

I'm posting from mobile for the first time so please excuse any formatting issues. I have not posted in a really long while for many reasons, but I'm feeling really desperate and hopeless right now.

A little background:
DS 2 was diagnosed with ASD back in February when he was twenty months old. When he was first diagnosed I guess I convinced myself that it wasn't that bad and he would eventually be fine. The professionals all told me that he was a mild case and with therapy had a real chance of going to regular kindergarten.

Well, he's now two and a half and still not talking. That wouldn't worry me as much if his receptive language was decent, but it's not. He understands very, very little spoken language. I'm downright terrified that he will never get better. Terrified.

He does have some skills. For example, he can do puzzles, match colors, sort shapes, eat at the table with utensils, etc. He is also very social. He loves playing with his three year old sister, he loves playing chase with the boys at the park, he is very attached to me and the rest of the family, gives hugs and kisses, etc. None of these things are done on command though because if you tell him to do anything he does not understand, even if he's paying careful attention. It's scary how little of language he understands.

I'm just really scared and losing hope of a somewhat "normal" life for him. I'm scared about what will happen to him when I die. Who will take care of him? Will he end up in an institution? Someone please tell me there's still hope. That things will get better.

Sorry for the long post from a stranger, but I really need to feel like I'm not alone and that it's not hopeless for my beautiful baby boy

DD born 6.13.11 at 37w5d

DS born 5.23.12 at 36w5d

BFP 6.9.13|heartbeat of 128bpm 7weeks|7.23.13 ultrasound revealed no heartbeat|natural m/c and d&c 7.25.13

DS born 5.20.14 at 38 weeks

All are welcome

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Re: Desperate plea for comfort

  • I am so sorry you're in a difficult place.  Have you considered finding a therapist for some talk therapy?  Sometimes it helps to have someone to just get it all out to.

    My boys don't have ASD, but have a genetic issue and understand very little language.

    It's hard, because you're moving through the stages of grief. One stage is bargaining.  "Ok, well he has ASD BUT it's just a mild case" and then we move to another stage and it hits us in a totally different way.

    We all have children with different issues, but we can all empathize/sympathize with you.  <<Hugs>>
    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
    bumpuser511563
  • hopecountshopecounts member
    Sixth Anniversary 2500 Comments 500 Love Its Name Dropper
    edited December 2014
    ((hugs))
    remember developmentally your son is 1/1.5 when you compare him to that age group it sounds likehe isn't that far off in terms of language.
    Give it time, therapy is a work in progress at this early stage.
    Is he in ABA? For DD that was a game changer she wants to communicate/interact/etc but didn't know how, ABA has layed it out for her in a way she could make sense of and she had a big leap in language skills.
    She was basically non-verbal at 3 and over the last year became verbal  (i.e. when she was developmentally 1.5/2)
    POF DE gave us our Miracle
    April '09 BFN
    Sept. '09 Fet BFN
    Dec. 11 '09 FET... hpt 12/18
    Beta 12/21 151 Beta 2 12/23 284
    U/S 1/6/10 1 healthy baby w/ Heartbeat
    August 24, 2010 Sweetpea is born!

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  • I don't have much to offer, but a creepy internet hugs.  I know that a SN trust can be done to care for a child in case of a parent death/disability.
    Wendy Twins 1/27/06. DS and DD
  • (((((Hugs)))))!!!!
  • Big hugs, Momma. <3
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    "I wanted you more than you'll ever know, so I sent love to follow wherever you go."

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    Ginny DX 21-Hydroxylase Deficiency Congenital Adrenal Hyperplasia

    Charlie DX Specific Antibody Deficiency & ASD

  • Sending you big hugs! My son finally started talking right around 2.5 years old and at 3.5 is doing great! What made a huge difference for him was a lot of therapy hours. We had him in a speech program with a one on one student therapist 12 hours a week for 6 months before he finally started talking. And since then 12 hours a week of ABA plus preschool, speech and OT have been a huge game changer for him. ASD's can't be treated over night, it is a life long disability and its a long road. You can absolutely do this!


    DS1: 4/15/2011
    Dx: ASD, SPD and receptive and expressive speech delay at 21 months
    BFP #2: CP 5/2012
    DS2: 4/24/2013
    BFP #4: Miscarriage at 5 weeks 7/2014
    BFP #5: 8/8/2014 Due 4/20/2015 
    Its a healthy girl!!!!! 
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  • Thanks so much for your replies everyone. It helps to know that I'm not alone and it's not completely hopeless.
    For those of you who asked, he receives ten hours of Floortime, ten hours of ABA, plus speech, ot, and pt three times a week.

    DD born 6.13.11 at 37w5d

    DS born 5.23.12 at 36w5d

    BFP 6.9.13|heartbeat of 128bpm 7weeks|7.23.13 ultrasound revealed no heartbeat|natural m/c and d&c 7.25.13

    DS born 5.20.14 at 38 weeks

    All are welcome

    image

  • We were first told DS likely had asd at 21 months (June '13). He pretty much only hummed, would say Ma if he needed something from me. Receptive language, that I could tell, was nil. A year ago he had maybe a dozen rarely used words, including some 2-3 word phrases. Receptive language still was iffy. Sometime this spring, so at 2.5, his receptive language took off. Now his expressive language is probably at 50+ words, including many spontaneous speech

    Obviously every kid is different, but perhaps DSs history will calm you a little.

    I've had moments like you are. honestly, I've found that I can't think about the big picture.  DS is only three. If I think about what will happen when he is 13, or 30, or 70 my anxiety flips out. So I focus on the shorter term. Now up to Kindie. Yeah, we're preparing for the long term financially and such, but there are so many unknowns at our kids young ages. Things will become clearer as they get older, that's what I'm telling myself anyway. ;)

    BFP#2 2.5.11 (EDD 10.15.11) DS born 9.28.11

    BFP#4 8.27.13 (EDD 5.6.14) DD born 4.23.14

     

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    [Deleted User]
  • Also, I can't speak for everyone else's kids, but I've had several moments where DS makes it clear that all those times I was talking to him and thinking he was ignoring me, I thought he didn't understand anything...he wasn't ignoring me and he was absorbing more than I thought. He pointed to the moon in a book one night when asked to. I'd pointed it out to him eleven billion times and not once thought he was paying attention... but he was. He takes things in, just not the same way most people do.

    BFP#2 2.5.11 (EDD 10.15.11) DS born 9.28.11

    BFP#4 8.27.13 (EDD 5.6.14) DD born 4.23.14

     

    Lilypie - (2llN)

    Lilypie - (2L9u)

     

      My Recipe Blog
    ~All AL'ers welcome~

  • oh and yes now that DD is talking I am amazed at her comments that show how much she was actually taking in even if it wasn't clear at the time since she couldn't verbalize it. It sounds like you have a great therapy program going so keep on keeping on because he is probably getting more then you realize out of things.
    POF DE gave us our Miracle
    April '09 BFN
    Sept. '09 Fet BFN
    Dec. 11 '09 FET... hpt 12/18
    Beta 12/21 151 Beta 2 12/23 284
    U/S 1/6/10 1 healthy baby w/ Heartbeat
    August 24, 2010 Sweetpea is born!

    [IMG]http://i51.tinypic.com/67p4t4.jpg[/IMG][IMG]http://i38.tinypic.com/2ly1xz5.jpg[/IMG]
    [Deleted User]
  • DS is a couple of months younger than your LO, but he does a lot of those same things. Loves playing with other kids, puzzles, shape sorting. But he just doesn't understand most things we say. It's how we knew there was more than just a speech delay. Hugs. You definitely aren't alone and it's not hopeless.
    DS 10/2012
    image
  • Big hugs. You are not alone. Some days are so dark. I hope tomorrow is brighter.
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  • I just want to lend my support.  I have had many bleak moments when I fear that my son may have reached his potential and "capped out," and that from here on out, the gap between him and his peers will only widen.  But he has continually proved me wrong, and progressed by leaps and bounds when I least expect it.  Now I know that just because he seems to stall out every now and then, not to jump to the worst conclusions.  As long as your son continues to receive therapies from innovative and relentless therapists/teachers, he is likely to progress.  Sometimes that improvement will happen by surprising leaps and bounds, and other times it may be at such a small pace that your don't realize it until you look back at how far he's come, but either way,you'll see that there is improvement.

    I will pray for your comfort and solace when things seem bleak and uncertain.  Lord knows I've been there.

    august06mom
  • Big, big hugs.
    Baby Birthday Ticker Ticker
    11/10/10 The Kid
  • Just wanted to offer support.  I spent the better part of a year in a very dark place when DS was dx, wondering if I'd ever feel true happiness again.   It was so hard, and the worst of it was the people around me couldn't possibly get it. But it turned around eventually and there is happiness and true joy again.  I promise it won't always feel like it does right now. 
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