Scheduled my 15 month old for an evaluation

[Anonymous]

OP, I came across this thread while doing the search for my DD. She had pretty much all the signs that your DS had with the same time line. We did pretty the same you did, noticed something wasnt right around 16 month, got Infant and Toddler Connection evaluation at 17.5 months, got ST and OT for almost 3 months before being seen by a developmental ped at KKI (at 21 months). DD was given a normal IQ, MERLD, with features of AS vs. ASD diagnosis. The dev. ped referred us to CARD for ADOS and we are waiting for CARD to contact us for the testing (was told it would take 2-3 months to get an appt for ADOS). We just started mainstream preschool (4 hrs a day) for her with the hope that she will get more peer interaction. We stopped ITC's ST and OT and are doing private ST for now.

I've been combing through the forums for treatment experience. This forums has wealth of experience and your thread is one of the most useful ones. I saw the post about NIH study and wondered if we should look into that while waiting for CARD. Our main purpose is to get the most accurate diagnosis possible in order to find the appropriate intervention for our daughter. I hope you still follow the thread and could update your DS progress. Thanks!

[Anonymous]

Anonymous wrote:My completely normal child had fewer words and was barely walking at 15 months. Keep an eye on things but don't worry. The mchat is for 18 months and up - a LOT happens in 3 months!!

Normal... That's gross. Our kids are normal too.

[Anonymous]

Anonymous wrote:OP, I came across this thread while doing the search for my DD. She had pretty much all the signs that your DS had with the same time line. We did pretty the same you did, noticed something wasnt right around 16 month, got Infant and Toddler Connection evaluation at 17.5 months, got ST and OT for almost 3 months before being seen by a developmental ped at KKI (at 21 months). DD was given a normal IQ, MERLD, with features of AS vs. ASD diagnosis. The dev. ped referred us to CARD for ADOS and we are waiting for CARD to contact us for the testing (was told it would take 2-3 months to get an appt for ADOS). We just started mainstream preschool (4 hrs a day) for her with the hope that she will get more peer interaction. We stopped ITC's ST and OT and are doing private ST for now.

I've been combing through the forums for treatment experience. This forums has wealth of experience and your thread is one of the most useful ones. I saw the post about NIH study and wondered if we should look into that while waiting for CARD. Our main purpose is to get the most accurate diagnosis possible in order to find the appropriate intervention for our daughter. I hope you still follow the thread and could update your DS progress. Thanks!

I'm one of the people that posts about our very positive experiences with NIH research studies. My SN kids are now 11 and 8. The older started in NIH studies at age 5 and the younger started at age 2. The first study was for ASD and/or other developmental delays. My younger DS did not meet the criteria for ASD but did have delays significant enough to qualify under 'other dev delays'. Each year, those reports become more and more valuable - especially for for my youngest whose challenges require more intense interventions. The reports have been key in documenting their needs and getting services through the school system.

I don't know what the right word is but (for lack of a better one), I'm so proud and relieved that I pursued those evaluations from NIH. We often beat ourselves up because we didn't do something earlier, feel we should have done more or done something different. I am filled with relief that I signed the boys up for those NIH studies.

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP, I came across this thread while doing the search for my DD. She had pretty much all the signs that your DS had with the same time line. We did pretty the same you did, noticed something wasnt right around 16 month, got Infant and Toddler Connection evaluation at 17.5 months, got ST and OT for almost 3 months before being seen by a developmental ped at KKI (at 21 months). DD was given a normal IQ, MERLD, with features of AS vs. ASD diagnosis. The dev. ped referred us to CARD for ADOS and we are waiting for CARD to contact us for the testing (was told it would take 2-3 months to get an appt for ADOS). We just started mainstream preschool (4 hrs a day) for her with the hope that she will get more peer interaction. We stopped ITC's ST and OT and are doing private ST for now.

I've been combing through the forums for treatment experience. This forums has wealth of experience and your thread is one of the most useful ones. I saw the post about NIH study and wondered if we should look into that while waiting for CARD. Our main purpose is to get the most accurate diagnosis possible in order to find the appropriate intervention for our daughter. I hope you still follow the thread and could update your DS progress. Thanks!

I'm one of the people that posts about our very positive experiences with NIH research studies. My SN kids are now 11 and 8. The older started in NIH studies at age 5 and the younger started at age 2. The first study was for ASD and/or other developmental delays. My younger DS did not meet the criteria for ASD but did have delays significant enough to qualify under 'other dev delays'. Each year, those reports become more and more valuable - especially for for my youngest whose challenges require more intense interventions. The reports have been key in documenting their needs and getting services through the school system.

I don't know what the right word is but (for lack of a better one), I'm so proud and relieved that I pursued those evaluations from NIH. We often beat ourselves up because we didn't do something earlier, feel we should have done more or done something different. I am filled with relief that I signed the boys up for those NIH studies.

Thank you so much for sharing your experience. I will seriously look into this.

[Anonymous]

Anonymous wrote:OP, I came across this thread while doing the search for my DD. She had pretty much all the signs that your DS had with the same time line. We did pretty the same you did, noticed something wasnt right around 16 month, got Infant and Toddler Connection evaluation at 17.5 months, got ST and OT for almost 3 months before being seen by a developmental ped at KKI (at 21 months). DD was given a normal IQ, MERLD, with features of AS vs. ASD diagnosis. The dev. ped referred us to CARD for ADOS and we are waiting for CARD to contact us for the testing (was told it would take 2-3 months to get an appt for ADOS). We just started mainstream preschool (4 hrs a day) for her with the hope that she will get more peer interaction. We stopped ITC's ST and OT and are doing private ST for now.

I've been combing through the forums for treatment experience. This forums has wealth of experience and your thread is one of the most useful ones. I saw the post about NIH study and wondered if we should look into that while waiting for CARD. Our main purpose is to get the most accurate diagnosis possible in order to find the appropriate intervention for our daughter. I hope you still follow the thread and could update your DS progress. Thanks!

This is OP. I will post a more detailed update by the end of the week, sorry I don't have time now. DS is doing great with therapy! Just wanted to encourage you to enroll in the NIH study. Your DD will have a lot of benefits and I don't see any downsides.

[Anonymous]

01.47 here. Thank you so much for replying. I really appreciate it since I know how busy you are taking care of a SN kid. I'm contacting NIH now. My email is cidifour at yahoo.com just in case you can spare some time to share more details.

[Anonymous]

OP here. Sorry it took so long to update, have been dealing with some family issues.

DS is doing really well overall. He is almost 2 and was recently retested on the Mullen scale. Expressive language at 29 month level (!), receptive language 24 mo, visual reception 26 mo, fine motor 23 mo (another huge improvement!), and gross motor at 20 mo (which surprised me, I would have guessed much lower). His Vineland scores were also good overall, except for motor skills and some aspects of the socialization category, which was to be expected.

He is a happy kid. His ASD impairments are becoming more apparent now, that he’s older, mostly in social skills. I’m guessing he would have been diagnosed with Asperger’s before the DSM update. There might be some sensory (vestibular and proprioceptive) issues that might explain his motor delays, which in turn affect his self-help and motor planning, which causes him to get easily frustrated. He still doesn’t know how to hug, but will lean in for one. He can’t quite imitate actions (e.g.: song motions like ‘If You’re Happy and you Know It’) without a lot of practice and prompting. He doesn’t give kisses. His eye contact has decreased, but we’re working on strategies to help him go back to his previous level of connection. He’s interested in other kids but doesn’t seem able to engage in play, and reciprocity in play with peers and adults is also an issue. There are some challenging behaviors, but I’m hoping the OT/PT will help with that, because some are caused by his frustrations with his own physical limitations. He does have perseverations, and will talk incessantly about whatever interests him. He’s a fast learner. He has an amazing brain, great memory and a fascinating way of finding symbols in the most obscure corner and smallest print; although we didn’t particularly try to teach him, he already knows all the letters, numbers, and some symbols/ signs, and can read all these upside down and in mirror image.

He’s getting ABA-ESDM therapy, going to an Early Intervention playgroup twice a week, and we’ll start soon OT and PT 1 hr weekly. The book “the Out of Sync Child Has Fun” is often recommended on this forum, and I’m reading it for more ideas. I’m also lining up play dates as often as I can to work on social skills.

We decided that I would stay home with DS for the next year, at least. At the beginning of all this I was hoping the therapy would ‘fix’ his ASD. I’m starting to realize this might be a life-long journey. Our goal now is to expand his horizon (because ASD restricts interests), and help him be happy, integrated, and self-sufficient in adulthood.

01:47, if you need more details, let me know and I’ll email you. Good luck with your little one.

[Anonymous]

Thanks for the update, OP. I can tell from the words you use, you've immersed yourself in learning about your DS and development. I know how difficult it is and you're doing it really well. Hugs.