Special Needs

Developmental specialist and more FTM concerns

Grant is currently getting OT and ST.  He is delayed due to the use of his arms (no reaching, unable to push up with his arms, barely rolling over). He is generally behind because he still is unable to sit up on his own. He is behind in speech because of the noises he is making aren't the right type of noises.  He doesn't imitate mouth movements.  He seems to start to develop a skill, really make progress, then he will regress.  The OT said that she thought his skill levels were of about a 4 month old.  She also said she doubts he will be able to even crawl by a year.

Grant had his 9 month check up and our pedi recommended that we see a developmental specialist.  I am waiting for the referral to be processed before I can set the appointment.  We will be going to Riley Children's Hospital in Indianapolis.  

How long does it take to get seen by the developmental specialist?  How often are they able to make a diagnosis?  What should I expect?  Does anyone have experience with that particular hospital?  Any resources or books I should check out? 

I am a FTM and I have no experience with having a delayed child.  No one I knows has been through anything like this, and I'm not sure were to turn.  Everyone just tells me that I worry too much and that he will catch up.  I know that is a possibility, but there are just some things that are clearly different about Grant compared to other babies of any age.  I also have a few things that raise red flags for me (not reaching for anything and regressing with skills).

I am having trouble dealing with this and life in general.  I don't feel like I am enjoying my child like I should because I am constantly worried.  I also get upset when I try to play with him because his lack of abilities just really get to me.  He is such a cute little boy, but I just tend to focus on his weaknesses.  I feel like a terrible mother for so many reasons.  I am probably more depressed right now because I broke my foot a month ago and have been pretty much on bed rest since then.  I had surgery and I will have to have 2 more to fix my foot.  I had to quit breastfeeding because of the pain killers, and I absolutely hate giving him formula.  It makes me so depressed when I have to feed him a bottle.

How do people deal with all this stuff?  I need so much help.

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Re: Developmental specialist and more FTM concerns

  • First and foremost - you are NOT a terrible mother for anything that you listed above.

    I'm also a FTM and my DD was diagnosed with having had a stroke in utero. She is globally delayed, STILL doesn't crawl (she's 22 months), and only stands with a lot of support. She is at about a 6-7 month level physically. 

    We didn't see a developmental specialist so I can't address that. We went from pediatrician to neurologist. But DD has a very small head and that was why the pedi wanted us to see neuro. 

    It's VERY hard not to see the lack of abilities. It's a constant heartache. When you interact with him, focus on the things he can do. If he laughs while you make a stuffed animal dance, keep it up. It's hard but you *can* enjoy him and *will* enjoy him. 

    It's been 11 months since we got DD's diagnosis and it's still very difficult not to say, "well she's not doing this when other kids are doing this. She's so behind for her age." It's a constant battle to remind myself that she's come so far in under a year of EI. It's a constant battle to remind myself that our normal is *ours* and no one elses. It's a constant battle to remind myself of all of the joy she brings to everyone she meets. There isn't a single person who doesn't fall in love with her laugh, smile, and engaging personality. 

    this group here is quiet but one of the most supportive, knowledgeable and diverse groups I've ever encountered. Utilize us and remember that your situation is unique but you're not alone.


  • PS, your siggy pics are KILLING me. he's one handsome little guy!

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  • We see developmental peds at Riley.  If I remember correctly it took about a month to get in.
  • You're doing all the right things. 

    About the only question I can take a stab at is how long it'll take to see a developmental pediatrician -- and that totally depends on your area. I think it's often a wait of 2-4 months; sometimes it's six; in some places, the waiting time for a full developmental eval can take over a year. Hopefully it's on the shorter end in your area. 

    I was told that I was an over-worried FTM, too. Guess what, those people were wrong and I was right that something was off -- my DD1 got an autism dx at three. A mother's instinct is a powerful thing. Don't listen to them, as tempting as it is to be soothed that everything's okay. You already know something is up with your child, and you need a professional's guidance to help figure out what it is. As much as those people probably love you & your son & want the best for you both, they're not helping. If they can't be helpful, limit their knowledge/ability to second-guess you.

    Everybody *wants* nothing to be wrong, so they say that -- but sometimes something really is wrong, and being willfully blind to that hurts your son instead of helping him. Stay strong on pursuing the answers and help he needs. 

    We talk about a grief process when it comes to having a SN child. You have to let yourself grieve for the child you thought you'd have, the parenting experience you envisioned, and realize that it's okay to have those feelings and still love the child you actually live with. It takes time and processing to get to a place of accepting that your child isn't typical, and concentrating on their strengths while helping them address their weaknesses.  

    It sounds like you could really use some help for yourself -- a therapist who can listen to you without trying to fix or judge, or maybe even meds to help you through for awhile. One of our regs, auntie, talks about how it's kind of like the rule for the masks that pop down on an airplane -- you put your own on first, then you can help the person next to you. You need to make sure you're in a healthy place, because if you're depressed or struggling, dealing with your child's differences is even harder -- and he needs a healthy, happy mommy. 

    I've been there, I know it's hard. The best thing you can do for your son right now is to get help for yourself so that YOU feel better and stronger and more confident as you help him move forward and make progress. 

    You think you're the only person you know who has dealt with this, but I guarantee there are others out that you just don't know. Maybe they don't talk about it, maybe their kids are older; but they're there. And there are people like there are here, online, who maybe haven't been in that exact boat but have been through something similar. You're not alone.  


    DD1, 1/5/2008 ~~~ DD2, 3/17/2010
  • I know it can be so overwhelming at first, but you're on the right track. I'm from Indy so Riley has a special place in my heart but I don't live there now. In our area, waits to see a developmental pediatrician are 6-18 months (for Alex it ended up being 6 months). Is your LO's current therapies through EI? Could you see if he'd qualify now for PT as well? (If you haven't already.) I also agree with pp that seeing a therapist for yourself is probably a good idea, too, since you are dealing with a lot of stresses at once. Hang in there!
    fraternal twin boys born january 2009
  • Just chiming in with a similar post.  My experience is a little different, but we struggle with a child who isn't fitting in with the baby books.  :)  Our DD has struggled with bottle and food refusal for 10 months now (just turned one in Nov).  She also does not have any speech besides babbling, and is now getting hit with fever after fever (104 or so each time).  So, more medical, but still, very scary.  I am not even a FTM, but I definitely feel like I am.  It is almost worse, because I compare her to my son very often, who was a HUGE eater, had decent speech and has only had one fever in his life, and he is almost 3.  I have been going to a counselor, because I am such a neurotic person anyways, and when it comes to my children, I lay awake at night worrying.  With recent issues regarding my DD, things have been worse, and I think I developed an ulcer, so that pushed me into seeking help. 
    I understand how you feel about not loving this first year of their life.  All I want to do is forget about my worries and just enjoy this time; but it is hard.  Every meal is a struggle, and every time she gets sick (which is about every 3 weeks), she gets closer to dehydration and a trip to the ER.  I want to take back the last 10 months of worrying, but I know that I can't.  I am working on trying to find a little time every day to calm down, close my eyes and take a deep breath and think about what I appreciate about her and this time.  It is a slow start- but it is something.  It is the only time when I don't have racing thoughts and mini panic attacks.  Dr. Google is the worst, and I would tell you to stay off as much as possible, but then I would be the world's biggest hypocrite.  One thing I ask- Do something nice for yourself.  Even if it is just to buy a new shirt, get a good cup of coffee, get a massage- whatever.  Do it when you can.  It probably won't be a regular thing, but once in a while stop and think to do it.  It can even be a call to your counselor.  Auntie's advice about the plane and O2 is right- we can't help our kids like this.  It is not sustainable for us to be sane! 
    Good luck and my thoughts are with you.


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  • I can't answer any of your questions really, but HUGS to you. I am a FTM as well, and I have known for a while that my DD was different. Like you, I was often told "wait and see" or that everything would be fine.

    Even when she flagged on a screening around 8 months or so the pediatrician dismissed it as us being confused about the questions (we weren't). LO did not crawl until she was 11 months and did not walk until 13 months. She waved and pointed when she was around 10 or 11 months but she no longer does that...which is another easy way for her to get by a screening. When a question is asked "can she do suchy such" I would think "well sure she can" but in truth she never does anymore...even when asked. She can count to 25, read, say and knows all letters, sing entire lines of songs from memory but she can't tell you she wants a bottle or something to eat, and doesn't point out anything of interest.

    My point in telling you all of that is simply that I KNEW something was different about her, and now I am pushing for answers too. Follow your instincts, push for help. Tell people you can trust for support but who aren't going to nag you or ask you to support them or argue with you. I'm right where you are.

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