Community› The Bump Message Boards› Special Needs
Special Needs
New Discussion

Intro, I guess.. maybe LOL

Mrs.T22308Mrs.T22308
in Special Needs

Hey ladies,

 I was a bump member through my struggles with IF and have since been busy with my 2 miracles.  I occasionally lurk on the boards when I have time and remembered that this board was here while searching for some info on my son.

 

I finally called Birth 23 (aka EI) a few months ago for my son.  I know we are in the throws of the terrible 2's but we were struggling with A LOT of things with him.  He's had the evaluation and it was determined he has a moderate delay in cognitive/learning style and a significant delay in adaptive skills and receptive communications. We've had his coordinator out here once and we have another visit with her Thursday as well as an OT consult (my husband, myself and his coordinator all agree that he probably has some sort of sensory issue). His coordinator also mentioned re-doing the MCHAT.

 

Of course I have done nothing but google since this all started and I am so scared and confused. I read articles about both SPD and ASD and he fits the bill in a lot of ways.  There is just so much information and I am struggling with comprehending it all.  I am the type of person that needs to research and comprehend everything or it makes me even more frustrated.  I know obsessing isn't going to get me anywhere but I feel out of control and hate it!  

 

Our coordinator's plan is going to be (at least for now) once a week, but when she was here last week.. all we went over was the sign for please and to encourage eye contact. I feel like we've not only made zero progress, but that we are wasting time and he is slipping away.  The sensory issues seem worse as the hours tick by (I know thats not the case but I feel like we are getting no where).   

 

I hope that once we have diagnoses, I will feel better and have something to focus on.. but for now I am a wreck.  I hope you will have me, and help guide me when I need it.  

 If any one has some fab resources for sensory type things and ASD that I can look at now, I'd greatly appreciate it.  Also... any advice on how to handle family who feel your kid is perfect, that there's nothing wrong with him and that you are a hypochondriac?  Yup, I have some of those and its not helping the stress levels! 

Lilypie First Birthday tickers Lilypie Third Birthday tickers M: 31 DH: 34 Dx: PCOS, Endo, Uterine Septum Ovarian Wedge Resection - May 2009 BFP #1 - October 2009 = DS BFP #2 - June 2011 = DD (Total Surprise!) Tree nut allergy in DS diagnosed 4/2012. Currently working with EI for SPD and possible ASD.
Report Reply to Post

Re: Intro, I guess.. maybe LOL

  • st.augbridest.augbride member
    I would recomend seeing a developmental pediatrician if you have genuine ASD concerns. The wait list could be long, so I think it is worth pursuing now and you could always change your mind later. Also, "zero progress" is about how I would describe our entire experience with EI. While it can take time, we wasted many months with them before moving to private services which is where we saw real progress. I would suggest finding a great speech pathologist. We also had amazing progress with ABA, though we just lost coverage of this since ds does not have ASD and our insurance recently changed their policy. Ds does have some sensory issues, but we got very little out of OT for it, even with great private therapist. We got the most bang for our buck through the others. Good luck..i know if can be overwhelming at first.
    imageLilypie Premature Baby tickers imageLilypie Premature Baby tickers
    Report Reply
  • Loading the player...
  • kcisthebombdotcomkcisthebombdotcom member

    Welcome!

    My little guy has SPD. Some resources we've found helpful:

    https://www.spdfoundation.net/

    https://www.spdfoundation.net/

    https://www.sensorystreet.com/free_downloads.html

    https://www.sensory-processing-disorder.com/

    https://sensorysmarts.com/sensory_diet_activities.html

    Facebook group called sensory processing disorder support and it's very active.

    For my son, once we got his sensory needs under control we saw tons of improvement. He makes eye contact better and his language skills have flourished--he went from a 9-12 month level in language at 1 1/2 to having totally age-appropriate language skills at 2 1/2. We still have some struggles but it really is a million times better with the sensory diet.

    Positive discipline has been really helpful with regards to behavior. www.ahaparenting.com is a good resource.

     

    Baby Birthday Ticker Ticker Baby Birthday Ticker Ticker
    Report Reply
  • Mrs.T22308Mrs.T22308

    Thanks ladies!  After having a total breakdown last night... I'm hoping for a fresh start today :)

     

    As for a private developmental pedi... I am on a wait list with Yale and UCONN and have been for over 2 months.  Both places have a 24 month wait time right now, just to be called for an appointment.  Then its another 3-6 months to get on the schedule.  I was actually told by Yale to call around in Boston and NYC... I might be able to find someone with a wait time closer to 12-18 months.  Talk about discouraging.  I actually started there thinking since we had insurance, we could get in there sooner than getting something through the state.  Boy was I wrong!

     

    I'll check out those suggestions... and based on what the OT says tomorrow... maybe Boston and NYC might be a good choice for us! 

    Lilypie First Birthday tickers Lilypie Third Birthday tickers M: 31 DH: 34 Dx: PCOS, Endo, Uterine Septum Ovarian Wedge Resection - May 2009 BFP #1 - October 2009 = DS BFP #2 - June 2011 = DD (Total Surprise!) Tree nut allergy in DS diagnosed 4/2012. Currently working with EI for SPD and possible ASD.
    Report Reply
  • kcisthebombdotcomkcisthebombdotcom member

    Check out Hasbro in Providence too. I'm positive they have a wait list, but it might be shorter than 24 months.

    Baby Birthday Ticker Ticker Baby Birthday Ticker Ticker
    Report Reply
  • WisteriacowWisteriacow member
    Would you consider driving south to MD? I liked the staff at Kennedy Kreiger in Baltimore. I'm pretty sure we only waited about 6-7 months between our first call and an actual appointment.
    Report Reply
  • Mrs.T22308Mrs.T22308

    imageWisteriacow:
    Would you consider driving south to MD? I liked the staff at Kennedy Kreiger in Baltimore. I'm pretty sure we only waited about 6-7 months between our first call and an actual appointment.

    I would obviously if it would help DS.  But its a FAR drive to go on a regular basis.  Would they take him just for an eval and diagnoses and then somehow transfer his care up here to another doctor?  We can't make that drive weekly/monthly :( 

     

     

    Lilypie First Birthday tickers Lilypie Third Birthday tickers M: 31 DH: 34 Dx: PCOS, Endo, Uterine Septum Ovarian Wedge Resection - May 2009 BFP #1 - October 2009 = DS BFP #2 - June 2011 = DD (Total Surprise!) Tree nut allergy in DS diagnosed 4/2012. Currently working with EI for SPD and possible ASD.
    Report Reply
  • WisteriacowWisteriacow member
    imageMrs.T22308:

    imageWisteriacow:
    Would you consider driving south to MD? I liked the staff at Kennedy Kreiger in Baltimore. I'm pretty sure we only waited about 6-7 months between our first call and an actual appointment.

    I would obviously if it would help DS.  But its a FAR drive to go on a regular basis.  Would they take him just for an eval and diagnoses and then somehow transfer his care up here to another doctor?  We can't make that drive weekly/monthly :( 

     

    I think they would try to do that. It might be worthwhile trying to get in just for an evaluation. Then at least you'd have some idea of where you stand and could pursue therapy in your area. 

    Report Reply
This discussion has been closed.
Choose Another Board
Search Boards
"
"