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  1. #1
    Simon is offline Ruby level (4000+ posts)
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    Default I keep bursting into tears today

    I am struggling to come to terms with our situation with Ds2.

    Ds2 is only 18mo and has been diagnosed with a significant speech delay. His ST has suggested it might be oral motor planning and depending on what I read online this seems to fit very well or not at all. He has trouble with basic communication (verbal and nonverbal), speech (language) and maybe fine motor too (he has trouble signing).

    I feel like we know that something is clearly wrong, but there is very little we can do about it right now. There doesn't seem to be any way to do more testing or get an actual diagnosis until he is closer to 3yo. Logically, I can understand that he is still so very, very young in terms of speech/language development but he has many, many red flags that indicate he will not simply be a late talker.

    I feel a burning desire to be more proactive, but its like I have no direction and no where to put my energy. Other than EI, everything seems geared to much older kids. Again, the logical side of me understands why, but the other part of me weeps at the thought of having to wait another year or two to get more help!

    I am also feeling the roller coaster emotions of seeing improvement a few days in a row then regression for the next week. Its like, "Hey, we're making progress. I can feel good about this" and then "wait, where did it all go?" Ds2 had a real growth spurt 2 weeks ago, and the skills are mostly gone again.

    I am just feeling all alone though I know I am not the only person dealing with these issues. If you've made it his far, thank you! I made the mistake of reading too much online yesterday and that was a bad idea. Can anyone suggest a good boards for parents whose kids have developmental delays (speech specific or not?).

  2. #2
    goldenpig's Avatar
    goldenpig is offline Sapphire level (2000+ posts)
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    I am sorry I don't have any info on this but I just wanted to give you a hug.
    Party of five!
    Double big sister
    Big brother
    Little brother

  3. #3
    Melaine is offline Blue Diamond level (20,000+ posts)
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    I don't have much to share either, but I hope you can find the info you need to get started on whatever course of action needs to be taken. I also wanted to mention that my younger brother had significant speech delays and some other developmental issues as a toddler but he is now incredibly articulate and confident, has his own musical/vocal CD out, and has actually done some radio work. Speech therapists can truly work wonders and in an amazingly short amount of time.

  4. #4
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    Gena is offline Emerald level (3000+ posts)
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    Hugs. You're in a very hard place right now. I remember being there.

    The good news is that you realize there are issues and you are getting started now, while your child is still very young. That's huge!

    The even better news is that there are things you can do now. Look into The Hanen Programs. These programs train you the parent on how to help encourage your child's language development. Ask your child's SLP about this. Or your local library may have some of their materials. Or you can attend their parent training sessions.

    Find out if there are resources for the PLAY Project in your area. This is a form of play therapy sometimes called "Floortime". The PLAY project is targeted towards children with Autism, but please don't let that scare you. It concentrates on parent and child playing together to build communication and relational skills. Many children with language delays benefit from this approach.

    Get a copy of The Late Talker: What to Do If Your Child Isn't Talking Yet . This is an excellent book that talks about langiage delays vs. language disorders. It focuses mainly on Childhood Apraxia of Speech, which is a problem with oral motor development. It sounds like this might be part of what you are dealing with. This book has a lot of good information about testing, diagnosis, treatment, and things you can do at home. Again, your local library may have a copy.

    Here are a couple of good websites:
    http://www.speech-express.com/
    http://www.apraxia-kids.org/
    http://www.cherab.org/information/sp...alapraxia.html

    Hang in there! And remember there are a lot of parents here who have been through this sort of thing.
    Gena

    DS, age 11 and always amazing

    “Autistics are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It's that you're destroying the peg." - Paul Collins, Not Even Wrong

  5. #5
    Simon is offline Ruby level (4000+ posts)
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    Thank you for the hugs and encouragement.

    Melaine, it is very encouraging to hear your brother's story. Thank you for sharing.

    Gena, I put the book you recommended on reserve at my library and am looking forward to reading it. Thank you also for the recommendations for new therapy options. I haven't heard of either one before and I am going to see if there are any local options. They do both sound as if they have potential for us.

  6. #6
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    I can well remember all those same feelings when DD was the same age as your son. We went from everyone telling us that she was fine and just a "late talker like her daddy" to hearing that she was at least a year behind in her speech, she had fine motor issues, possible apraxia of speech and possible other motor planning issues. It was a LOT to hear at once and I knew virtually nothing about any of it. It's very overwhelming and scary and heartbreaking when it's YOUR child.

    The advice I have, now that DD is nearly 7, is that there is lots that can be done and that there is a lot of hope. DD did speech therapy from 18 months to almost 6 years old. She started with one speech therapist in EI, who wasn't at all a good fit and scared me to death with all the "what if" scenarios, then we switched to a different speech therapist (along with a developmental therapist for fine motor) and things started to click. Lori was our therapist, and we had her until we aged out of EI at three. By that time, DD was saying words and short phrases and doing well, albeit still behind. She graduated out of the fine motor therapy (although I think we could have benefitted from a bit more, looking back). Then she moved on to the school system and group speech therapy. That wasn't as helpful as I would have liked, so we hired our former speech therapist back privately and worked with her along with the group therapy. She made great progress...and then continued through the school system with a one on one therapist.

    When she was ready to start K, we took a break from therapy because I felt comfortable with her progress, as well as my ability to help her continue learning. I knew that all day K was going to be enough stress for her...and it was. When we were evaluated at the end of the year, even without any more therapy, she was found to be age-appropriate (she still can't say her "r" sound, but that's normal) and we are pretty much done with speech therapy.

    As for the other stuff (apraxia, motor planning) we are still dealing with them, but they are more mild. They show up in everyday life, but we're adressing them. Right now, we're also dealing with sensory processing disorder, likely ADHD, possible mild Aspergers and the motor planning stuff. So one thing that we're doing to help is taking gymnastics to help her with her coordination, balance, social skills, and motor planning. It's not as scary as it sounded all those years ago.

    There are still plenty of times when I get a little emotional because life is just harder for DD. Right now, she's fairly oblivious to her differences (and to be fair, they are subtle to the average observer) but she has to work harder than almost every other kid her age to do what most kids just instinctively know how to /can do. Her little brother can do things that she struggled for years to do. It's hard as a parent to watch, but on the other hand, DD is one of the most persistent hard-working kids I've ever seen, so it's not all negative. She's also got a lot of empathy for others because she can relate better than most kids to those who struggle.

    So all that to say, that while it's really overwhelming at first (and sometimes along the way) you adjust. You learn. You grow. You cry sometimes. And then you resolve to get the help for your child that he/she needs. And you just do it. And you rejoice at each victory along the way because they are hard-fought.

    You can do this. I promise.
    Christina
    DD 9/04
    DS 7/09

  7. #7
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    You are not alone! I have been in your situation and although we are still dealing with delays, it does get better! DS was diagnosed with a severe speech delay at 2 and "apraxia-like symptoms" at 3. He's now seven and still in speech therapy. But you know what? He is doing just fine in school, has lots of friends, and is a happy child. I'll admit it's a little frustrating at times but I am committed to helping him no matter the work. One regret I do have is not applying for preschool-based funding for private therapy. I thought the public therapy was fine, but now that we're going through the same thing with DD (4) I see how my son could have benefited from more frequent therapy sessions.

    As for (fine) motor planning we are dealing with this with our daughter. OT has been a huge help and it's only been a few months.

    Therapies DO help, I almost cried this summer when I heard DS say "SH". Keep advocating for you child and expect great things in the future!

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