Special Needs

What's my next step?

Hi, I posted on this board a little over a week ago after a speech therapist suggested some sensory issues with my 25month old son. The past 2 weeks have been beyond stressful. His pediatrician feels that it is just a speech delay but gave me an EI referral. We have our assessment on the 11th. In the interim, we met with another private speech therapist for an evaluation. It was pretty inconclusive. She said it was too soon to say what is going on because she doesn't really know my son. She said she would like to hear him saying more words but was encouraged by how he played and mimicked her. She said she liked seeing him try to communicate. 
My husband and I have been reading as much as possible, just trying to figure out how to help my son. We also can't really pinpoint what the problem is beyond speech. To be honest, I feel like we got lazy for a long time. We would turn on the tv as soon as we got home from daycare/work. We weren't engaging him like we should. (no, we weren't ignoring him but we thought he enjoyed the tv shows) I feel terrible guilt over this.
We have gone electronics/tv free for the last two weeks and I can see a difference in my son's attention at home. We are reading every night and he is once again pointing to things I ask him to point to. His daycare teachers say that he has been very focused, following directions and participating in class projects.
I have taken and retaken every autism assessment quiz I can find and every single one comes back as low risk. I know there is no cookie-cutter kid with autism but I just want to find out what's going on with him. 
Do we contact a developmental pediatrician now or wait for the EI assessment? What can I expect at the evaluation??? 
BabyFruit Ticker

Re: What's my next step?

  • I would ask for a developmental pedi referral and go the ei route. It can take a really long time to get in with a good one. I'd rather have to cancel it because its unnecessary vs looking back and realizing it was necessary, Kwim?
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  • Yes, I called the area's best developmental pedi. Have to fill out some paperwork before they give me an appt. Next avail isn't until next month. Trying to keep myself from getting overwhelmed. I'm 3months pregnant and I've been SO consumed with ds that I keep forgetting I am having a 2nd!
    BabyFruit Ticker
  • edited November 2013
    Lovenyc said:
    Yes, I called the area's best developmental pedi. Have to fill out some paperwork before they give me an appt. Next avail isn't until next month. Trying to keep myself from getting overwhelmed. I'm 3months pregnant and I've been SO consumed with ds that I keep forgetting I am having a 2nd!

    You're lucky that you can get in that quickly! Here its 6-12 months, though I had my pedi call the office and she got her in within two. It's a pretty noninvasive appointment--they'll mostly have you go through an incredibly detailed history while they watch him in play, they'll do some testing which is mostly play based like puzzles and blocks, give you some sort of developmental delay dx, make sure he's getting the kind of therapies he needs, and say see you in six months.
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  • Is the developmental pedi the person who makes the "official" diagnosis?
    BabyFruit Ticker
  • Lovenyc said:
    Is the developmental pedi the person who makes the "official" diagnosis?

    They can, but at that young an age they probably wouldn't diagnose anything.
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  • KC_13 said:


    Lovenyc said:

    Yes, I called the area's best developmental pedi. Have to fill out some paperwork before they give me an appt. Next avail isn't until next month. Trying to keep myself from getting overwhelmed. I'm 3months pregnant and I've been SO consumed with ds that I keep forgetting I am having a 2nd!



    You're lucky that you can get in that quickly! Here its 6-12 months, though I had my pedi call the office and she got her in within two. It's a pretty noninvasive appointment--they'll mostly have you go through an incredibly detailed history while they watch him in play, they'll do some testing which is mostly play based like puzzles and blocks, give you some sort of developmental delay dx, make sure he's getting the kind of therapies he needs, and say see you in six months.


    That was how my sons eval went. He was 20m (red flags at 18m appt). That was in June, he is 25m now as well, and the f/u is due in Dec. They didn't dx at his first eval, just labeled him as "at risk" which opened up help from therapists and such at his age.

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  • Also, as someone who had two months pass when I wanted desperately to help my son and didn't know how (I remember crying into the phone when they told me the wait times for appts)...I just wanted to say that it sounds like you are doing a lot of the right stuff now at home.

    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~

  • Thank you. We had a very frustrating speech therapy appt this morning. This was only our 2nd visit but my gut is telling me that the therapist is not the best fit for my son. She is an older woman and was just a little too antsy with some of his toddler behavior. Constantly saying "ooh be careful. will he put that in his mouth? i don't want him to choke" etc, etc. Thing is, he wasn't even putting things in his mouth. She has me totally on edge.
    She was giving him one toy, letting him play w it for 2 minutes and then took it away and moved onto something else. My son engaged with her in some of the activities but not all. I could tell he was starting to get frustrated by the end of the session. She told me it's a process and it will take time for him to get used to her and the room. I understand all that but I left in tears, my son was nearly in tears and it really felt like a waste of time. I'm not expecting miracles but it didn't seem right. She wasn't telling me what she was doing...gave no input on how to help him at home, etc. Just frustrating.

    He was happy as a clam when I dropped him off at daycare. Went right into his room and sat down for circle time. He was happy and having fun. 

    I think it's best for us to hold off on further therapy until his EI evaluation next week. I just feel they will be able to give us an action plan and will help us figure out the next step. I think he will benefit from services at home or at daycare. Taking him out of his routine for 2 hours for a 35 minute speech session seemed so counterproductive.
    BabyFruit Ticker
  • Lovenyc said:
    Thank you. We had a very frustrating speech therapy appt this morning. This was only our 2nd visit but my gut is telling me that the therapist is not the best fit for my son. She is an older woman and was just a little too antsy with some of his toddler behavior. Constantly saying "ooh be careful. will he put that in his mouth? i don't want him to choke" etc, etc. Thing is, he wasn't even putting things in his mouth. She has me totally on edge.
    She was giving him one toy, letting him play w it for 2 minutes and then took it away and moved onto something else. My son engaged with her in some of the activities but not all. I could tell he was starting to get frustrated by the end of the session. She told me it's a process and it will take time for him to get used to her and the room. I understand all that but I left in tears, my son was nearly in tears and it really felt like a waste of time. I'm not expecting miracles but it didn't seem right. She wasn't telling me what she was doing...gave no input on how to help him at home, etc. Just frustrating.

    He was happy as a clam when I dropped him off at daycare. Went right into his room and sat down for circle time. He was happy and having fun. 

    I think it's best for us to hold off on further therapy until his EI evaluation next week. I just feel they will be able to give us an action plan and will help us figure out the next step. I think he will benefit from services at home or at daycare. Taking him out of his routine for 2 hours for a 35 minute speech session seemed so counterproductive.

    I wouldn't give up based on one session. She likely was trying to get a feel for what kinds of activities would be motivating for him, seeing how he did with transitions and getting an idea of where his play skills are since therapy is play based. You say she didn't give you any input for at home, but did you ask for any?
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  • Not giving up. It was 2 sessions. Our EI eval is next week. I think what upset me the most was she didn't seem to be very comfortable with a toddler. I think she has more experience with older kids.
    BabyFruit Ticker
  • And yes, she told me it would take a few sessions before she could get to know him. Understandable. She also told me it would take time for her to tell me how to help him at home.
    BabyFruit Ticker
  • edited November 2013
    Lovenyc said:
    Not giving up. It was 2 sessions. Our EI eval is next week. I think what upset me the most was she didn't seem to be very comfortable with a toddler. I think she has more experience with older kids.

    You said you were going to stop until your ei Eval. Unfortunately, your ei Eval probably isn't going to give you much insight as to ways to help. If your child participates, its going to be a while and afterwards your kid is going to be done. They'll calculate the scores, give you the results and say whether he qualifies. A therapist who evaluates him for a bit isn't going to give much in the way do advice outside of anything you can find on google. His slp will be the one to give you more targeted advice to help. My advice would be just be patient with the process. Your kid is young.
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  • I am so confused. If EI doesn't give us guidance, then who does? 
    BabyFruit Ticker
  • Lovenyc said:
    I am so confused. If EI doesn't give us guidance, then who does? 

    The people who do the ei Eval are not necessarily going to be the therapists that work with her. You would get guidance from her therapists.
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  • Ok, thanks. 
    BabyFruit Ticker
  • I'd contact a dev. pedi now. We saw one at 19 months, 25 months, and our next appointment is at 38 months - and that was the soonest we could get in. The hospital that we receive OT at isn't even scheduling appointments for dev. pedis right now.

    My son has been in EI since 18 months. They are doing a screening for ASD at his 3 year evaluation but they've told us that it is an educational diagnosis and not a medical one. So definitely get the ball rolling on both. We got into EI fairly quickly but I've heard it can take a long time depending on where you live. Best case scenario, you'll cancel the appointments. In the meantime, it's good to have something on the books.
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  • Thank you!
    BabyFruit Ticker
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