Hi, everyone- I'm posting to gather some info for my wonderful sister- hope that is OK. This may be a little long. Her older son, who is almost 4.5 years old has an initial appointment at Kennedy Kreiger in mid October. We were SO excited- despite our fears of a long wait time, she only has to wait 6 weeks. I think this has made things somewhat less overwhelming for her, because once she made the decision to try to get an evaluation, the idea of waiting and wondering for a long time seemed daunting.[
Anyway, Lucas (who is one of the most adorable, sweet, loving and awsome kids ever!) has been getting EI services since he was 21 months old (initially speech and then OT and PT added on about 6 months later). He has been in a part time special education preschool this past year (3 mornings a week) as well as in a mainstream preschool/daycare for parts of other days. My sister (who has a master's degree in special education) and the rest of us have a strong suspician that Lucas in on the spectrum (he fits the profile of autism, not Asperger's) but she (and all of us agree) that it is time for a specialist to chime in and help them find a direction to go for further treatment and intervention.
Any words of wisdom about what a KK evaluation will be like? I feel stupid because my DH and I can't give her any real idea what to anticipate. I'm a neuropsychologist, but I work in a private practice and a school and with older (school age and up) people and he's a pediatrician but aside from having strong "suspicians" generally leaves diagnosis to specialists. I feel helpless that we can't give her much advice and specific information that she is asking for, though when she has candidly asked for our professional opinions we've given them. I am relieved and so grateful that discussions about Lucas have gone very smoothly and lovingly. She is an amazing mom and an even more amazing person. I think that his needs have become more clear to her over the past year and the differences between him and peers have become more clear and the gulf has widened as the kids have gotten out of that toddler age and close to kindergarten age.
From what she's been told, he is being seen by a woman who is a developmental pediatrician, but not attached (specifically) to one of their "centers". I got the sense from what she was told that this doctor picks patients to see (don't know what her criteria is) and sees them personally, so the wait time is less. I wonder if this could be because he has current speech, OT and PT evaluations and goal reports so he doesn't need to wait for the initial evaluation to be multidisciplinary?
Don't know 100% what I'm asking, except for any info about the actual process for a 4.5 year old... and I guess also good thoughts and wishes for my sister and Lucas. I love them so much and am so proud of them all the time.
Of course every experience and every clinician are different, but we have been working with KKI since my son was 7 months old (now 2.5) so I wanted to respond.
In my experience, the clinicians there have been wonderful, thorough, engaging, and supportive. That has not always been my experience with some of the non-clinical staff (like many medical offices), so I have learned to be persistent and assertive to get what is necessary for my son (eg, no we can't come at 2 pm because he's napping at that time).
I think a lot of it will depend on what her goals are for their visit. Is she looking for additional interventions? Just a diagnosis? In the case of the latter, the dev ped may request assessment, which in our case was quite a few hours spread over a few days running through a number of assessment tools (play activities) with many different professionals. I then received results of these assessments and recommendations were made based on the results and on observations.
I learned that the more questions I asked, the more they shared about their observations and what they might mean.
In our case, the dev ped made recommendations for next steps and will also continue to see us herself. Again, in my experience, it is most helpful to share my biggest concerns and priorities to provide a full picture and not only what she sees in that moment, ask questions and follow-up questions if it feels like I'm not hearing the full story, and continue the conversation until I understand what they're telling me and agree with the suggested direction. The more your sister can share about what her son responds well to and not so well to, the better the ped can help her find a path that feels right.
By the way, KKI also has lots of research studies going on, and enrolling in one of these can often provide services and resources free of charge, so long as it's a good match for the child's needs.
I wish your sister and her son all the best. Please let her know she's welcome to contact me.
Not sure when the appointment is, they may have already gone. I know that in this area (MD/DC/NoVA), there seems to be a rotation in which hospital had the current reputation as "good" for doing testing. KK/JH, University of Maryland, and National Children's Hospital are the main three that test and they seem to all have periods of doing really well and then dropping off.
We had kind of a mixed experience as a family. It is a pretty far place from our home but is drivable (3 hours 1 way when allowing for traffic, parking, walking to the building). We looked forward with anticipation, asked as much as we could about what to expect, filled in what needed to be, etc. Our understanding going in was that there would be a team, the appointment would last a max of 2 hours, we would have follow up appointments (especially for academic testing), eventually we would get a printed dx with recommendations, they would help us find local counselors, etc. We knew we were dealing with ADHD and sensory problems as well as undiagnosed anxiety. We were concerned about Asperger's, anxiety and learning disabilities. We chose KK at the time because of its reputation for doing well with ASD children (we did not realize that this meant mainly children with classic autism).
We arrived at 10 for an appointment we were told would be no more than 2 hours. We did see a team, however they came in 1 at a time (or 1 plus 1 student) and he did not get to interface with them together. We were there about 6 hours; they kept insisting "just a short time more". They had no food available for purchase (cafe was being renovated, thankfully I had brought a huge bag of snacks) and could not order us food or in any way have food sent in. At the end, they said no follow up testing needed, they would mail me a report, we were welcome to follow up with them for counseling regarding night time bedwetting (something they had asked about with sensory questions, but something we had clearly stated we did not think was worth addressing at the time since we were working with our ped). We were done after 4PM.
It fell majorly short of our expectations, especially when we received the report. They only confirmed the dx we already had of ADHD and then stated that they couldn't address some of our concerns (Asperger's, anxiety, learning disabilities) because of the short appointment amongst other things. Again, the only follow up suggested through them was regarding night time training. I was not able to get follow-up through them at that point to address the concerns we had, at this point we would have to completely go through the process again. I had utilized my insurance, so was not able to follow up elsewhere at that time since there were caps. Overall, I was left disappointed and frustrated. I later realized from talking to parents at OT, etc. that many of them had similarly disappointing experiences. I recommend really asking your local professionals and parents in similar situations for the names of places and specific doctors if you can especially due to the cycling of reputations.
The things I tell other parents going into an appointment like that now (at any hospital center) are to bring lots of snacks and drinks, have a notebook to write down not only what is said but what times people are in and who is in, bring someone else with you as a second set of ears/hands (I brought my mom), and expect to not get everything you need out of it that day (you won't get a report immediately, you may need to follow up with appointments, etc). I wish your family (sister's family) well and hope their appointment is positive and helps to answer some of their questions.
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