Dev Ped appt

[2boyzmama]

Connor saw his Dev Ped a few days ago. I didn't post right away, because I had an awful stomach bug that knocked me flat out for several days. This dr is over an hour away, and I was seriously struggling with the drive, I lost count of how many times I stopped to find a bathroom But I didn't dare cancel the appt, the wait list for this clinic is LOOOOOONG.

Here's what her notes say:

"Connor is a 3yr1mo with Velocardiofacial Syndrome, bilateral conductive hearing loss related to aural atresia and chronic ear infections, immune dysfunction with frequent infections, history of laryngo-tracheo-bronchomalacia, severe expressive speech disorder, and some symptoms concerning for palatal insufficiency.

In regards to school amplification, a bone conduction FM system would be reasonable to consider. I have asked his managing audiologist and ENT for their perspective.

Due to multiple night wakings, it would be reasonable to consider a sleep study. This could occur through Dr Willging's office (one of his ENTs).

Educationally, Connor needs a total communication environment that supports his signing communication. It is important to have access to peers who can communicate with him at his level. This is particularly important as eventually, Connor will need to work collaboratively with peers on school work activities and projects.

Connor has made nice progress with his language and development. His family continues to do an excellent job of advocating for his needs."

I this dr!! She's funny, she's great with Connor, she *listens* to me, she shares wisdom, she appreciates my intelligence, etc. SO nice to work with a dr like this!!

[Linda on the move]

Originally Posted by 2boyzmama

Educationally, Connor needs a total communication environment that supports his signing communication. It is important to have access to peers who can communicate with him at his level. This is particularly important as eventually, Connor will need to work collaboratively with peers on school work activities and projects.

Glad you had a good visit! Will this help you get the district to pay for the school you want him in?

[2boyzmama]

Originally Posted by Linda on the move

Glad you had a good visit! Will this help you get the district to pay for the school you want him in?

I don't know. My next step is I'm going to ask the IEP team to present to me, in writing, their discussions of how they came up with their placement decision. Which I'm guessing is going to be difficult for them to come up with, because in writing it they'll discover that there was never adequate discussion, never adequate evaluation of alternatives, and they should discover that IDEA supports me in my desire to have him in an environment with other hearing impaired kiddos. We'll see. In the mean time, I'm racking up more and more letters like this in support of what I want, so if it ever comes down to mediation, I have lots of support. I have letters from many of his drs now.

[askew]

It's so nice to hear about a positive experience with a developmental ped. I have been terrified of them as a group, as I thought all they did was point out what is lacking. Thanks for sharing your experience.

[khaoskat]

Sounds very promising.

BTW - someone told me a long time ago that since the physician is making recommendations, that a school district needs to take those into consideration in placement and services. Not sure if it is true or not..

Also, have you considered asking for an independent evaluation to be paid by the school, to determine his needs and/or qualifications?

You are now the second person who has praised the Dev. Peds to me down in Cinci.

Not sure if you would consider it, but the sleep clinic at Dayton's CMC was great, and it was not that long of a wait for us to get in when we had it with DS1. They did the referral and about 3-4 weeks later we were in doing the sleep study. And our regular Ped is the one who made the referral, not an ENT or anything like that...

[2boyzmama]

Originally Posted by askew

It's so nice to hear about a positive experience with a developmental ped. I have been terrified of them as a group, as I thought all they did was point out what is lacking. Thanks for sharing your experience.

Connor sees Dev Peds at two different Children's Hospitals and both are wonderful!! The difference may be that we started seeing them after we already had a diagnosis (well, I guess our first appt was the same day we did the genetic testing, but I was positive about the diagnosis already, even if the drs weren't) So it has been very positive for us at each visit so far. Because we have a recognized syndrome, I can read everything ahead of time and come prepared with questions about different approaches and specialists, etc. So nothing from Dev Peds has blindsided me. Yet at least. We'll see how that goes as he gets into school-age, there are learning disabilities and behavior issues that are common in his syndrome, so far we haven't had to deal with that. I wonder if that will be harder. I feel like I have a handle on all the medical stuff finally.

Originally Posted by khaoskat

Sounds very promising.

BTW - someone told me a long time ago that since the physician is making recommendations, that a school district needs to take those into consideration in placement and services. Not sure if it is true or not..

Also, have you considered asking for an independent evaluation to be paid by the school, to determine his needs and/or qualifications?

You are now the second person who has praised the Dev. Peds to me down in Cinci.

Not sure if you would consider it, but the sleep clinic at Dayton's CMC was great, and it was not that long of a wait for us to get in when we had it with DS1. They did the referral and about 3-4 weeks later we were in doing the sleep study. And our regular Ped is the one who made the referral, not an ENT or anything like that...

He saw Dr Wiley in Cinci, and he sees Dr Kasten in Dayton. Dr Kasten is kind of loud and abrupt, but we love her. I can see how not everyone would love her, though. (My husband is very intimidated by her)

I also have heard that letters from people with "letters behind their names" can be helpful, which is why I'm gathering them all up. Next is the Geneticist, hopefully he'll write me a good letter too. The school does have to accept all the outside letters I bring in, and if there are enough of them that recommend a particular placement, then it really helps my case.

We did recently do an outside evaluation, I had someone from the Outreach Dept of Ohio School for the Deaf come and do an evaluation in the classroom. She did it completely independently, I had never met her before the assessment. I'm still waiting on her report. I have no idea what it will say! It could say that he's doing great and the environment is perfect, or it could say that he needs something different. It's been a few weeks now, I wonder why the letter isn't done yet...hmm...

You know it's funny you mention your ped ordering a sleep study, because I jsut got a letter today from our ped that says they received the report from Cinci Dev Peds and want me to call them regarding the sleep study! I was going to wait until Connor saw Endocrinology or Pulmonology, but I guess the ped wants to talk about it. Connor has his well-kid appt next week anyway, I'll talk to them then.

[khaoskat]

Originally Posted by 2boyzmama

You know it's funny you mention your ped ordering a sleep study, because I jsut got a letter today from our ped that says they received the report from Cinci Dev Peds and want me to call them regarding the sleep study! I was going to wait until Connor saw Endocrinology or Pulmonology, but I guess the ped wants to talk about it. Connor has his well-kid appt next week anyway, I'll talk to them then.

If your Ped will make the referral I would go ahead with it now based upon my/our experience. This way, it is done and one less thing to try to schedule. At this point, you will probably get your sleep study right around the time school gets out for the summer.

I am not sure what the facilities in Cinci are like, but in Dayton DH stayed with Nathan and had to stay in the lounge area with a lady who wouldn't go to sleep so he stayed up all night. DH was too tall to sleep in the little bed they offered/provided in the sleep study room.

[SpottedFoxx]

Originally Posted by askew

It's so nice to hear about a positive experience with a developmental ped. I have been terrified of them as a group, as I thought all they did was point out what is lacking. Thanks for sharing your experience.

I have to say I was terrified to see a DP for the same reason. I was very fortunate in that ours was wonderful and was able to communicate my son's needs to us in a very positive fashion.

I think a lot of the developmental pediatricians realize that 90% of the people coming to them are there because their child(ren) have challenges and work hard to deliver the news in as positive fashion as possible.

OP - I'm glad you had such a great experience. I hope your school district responds in a positive fashion as well.