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Feeling Helpless....LONG

Posted by on May. 28, 2012 at 8:15 AM
  • 12 Replies

Good Morning Ladies,

I just wanted to vent for a minute. My DD who is 26 (almost 27 months) is non verbal and has multiple other "red flags" so her pedi and EI worker and decided back in March to get her evaluated by the Center for Children with Special needs here at Tufts Floating Childrens Hospital.

I know there was about a 3-4 month wait. However,our paperwork was reviewed at the end of March and they still haven't sent us our letter saying when our appointment is. Tomorrow it will be 11 weeks since they reviewed it. I have called multiple times and got nowhere.

Then, her EI wanted her to go to Childrens Hospital to get her hearing checked so I called and had an appt for the very next day. Call her Dr for a referral only for them to tell me they wont refer her to childrens only to Tufts. So, I had to cancel my appt at Childrens and called Tufts. (same hospital I am awaiting news for about the CCSN), when I called their ENT dept they aren't booking until July!!!

All, I want is answers, I can't really do much more with out an "official" diagnosis. It breaks my heart every time I look at her and can not give her any answers. How can I fight for her, if I can't even get in the ring???

I can't tell you how much I have cried over the last week. My Dad suggested switching pedis because they aren't very helpful with referrals and some other issues. However, at this point if I switch Pedis I would have to restart the Tufts paperwork because its a different referring physician.


Any ideas, thoughts, or kind words? 

by on May. 28, 2012 at 8:15 AM
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Replies (1-10):
by Wendy on May. 28, 2012 at 9:02 AM

((hugs)) It is alot of waiting, at least you have EI in the meantime for support and help for your daughter.  

by on May. 28, 2012 at 9:11 AM

I agree its a lot of waiting but hang in there.  Its good you have EI for now.  We have had to wait 8 months for an appt before. 

by on May. 28, 2012 at 9:16 AM
Hugs! It is so much waiting! Unfortunately that seems to be the norm with parents, just like you, wondering what to do in the meantime. But at least you have EI. Hopefully it will all come together soon. I did have to switch pediatricians and things started working so much better. I would confirm that you would have to restart the referral process if you switch. I did not.
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by on May. 28, 2012 at 1:16 PM

 A good drs. office will make the appointments for you.  My sister and my mother worked for years in drs. offices and usually if a dr. office calls they can get you in faster.  Before I switch drs though, I would call the drs. office one more time and ask them can they call and try to get her in sooner.  If they won't do it then I would switch.  My pedi. office will call for me, check my insurance, and set up an appointment which is what they are supposed to do for specialty appointments.

On a side note, many of us had to wait between 3-9 months to get our kids diagnosed.  With autism on the rise and not enough drs who can dx autism, it is only getting worse.  Hang on, you will get your dx eventually.  If I were you I would read and research all I can about autism in the mean time.  That way you can begin to help her immediately at home and will also be well versed by the appointment does roll around.


by on May. 28, 2012 at 2:20 PM

Tufts is great but there are plenty of other places to get a diagnosis in Massachusetts. If you switch pediatricians you will most likely find that they can refer and get things done much quicker. I was in the exact same boat until I changed pediatricians and ended up with a behavioral/developmental eval through Reliant Medical Group in a matter of weeks. Now I go back and forth between Reliant and Childrens.

by on May. 28, 2012 at 2:29 PM
Oh sweetie, I relate!! Took us 10 months to get our oldest on for testing. Here children's doesn't send the letter until just a few weeks before the appointment. Hang in there. Call and ask for a nurse and make sure they have EVERYTHING they need to book the appointment. We went round and round with them to get in. I'm sure hoping you don't have to go thru that too.
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by on May. 28, 2012 at 5:00 PM

Thank you ladies for all of your help, I really appreciate it. This is definitely giving me a lesson in patience. 

by on May. 28, 2012 at 5:15 PM

Patience, phone calls, and getting on the cancellation list.  It is frustrating, I know.  You can consider switching peds, but that will likely still start things from square one again.  Have you explored whether you could get a referral to MGH? They also do ASD evaluations (they did the first one on our DS).  They also have ASD offices in Charlestown and Wellesley, I believe.  

A hearing evaluation is relatively straightforward, however.  (I wouldn't stress too much about having to wait until July, but I know it seems like forever.)

by on May. 28, 2012 at 5:30 PM

awww mamam first oif all welcome 2 the need to cry while it seems hopeless and u feel helples syou well get there and you are in the right group for support

by on May. 28, 2012 at 10:17 PM

 (((HUGS))) It's a process. You'll get through it. It's frustrating. Like you, I had my son in EI too, and in private therapy so we were getting help for him without a dx, but the waiting is a killer. It really is. Hang in there. XO


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