Scheduled my 15 month old for an evaluation

[Anonymous]

1st update – Early Intervention team evaluation, with OT, speech therapist and education/ social therapist.
DS was 17 months, and scored:
Gross motor 9 mo
Fine motor 7 mo
Receptive language 10 mo
Expressive language 10 mo
Cognition 14 mo
Social 14 mo
Adaptive 12 mo
These were better scores than the intake nurse’s evaluation, and I do think the motor skills were underrated because he wasn’t familiar with the toys. If they were to test him now, he’d score higher.

[Anonymous]

2nd update - DS
DS has made some progress, mostly unrelated to the therapy, which we just started. He still drools, but not as much. He eats very well now. He’s learned to clap and wave just before 16 months, and started walking unassisted soon thereafter. He has a vocabulary of at least 14 words, but does not use most of them meaningfully. We’re only sure he understand what two of them mean. He still doesn’t call ‘mama/ daddy’ to get our attention, although he can say the words. Although he doesn’t consistently respond to his name by turning his head, he does smile when he hears me calling him. He thinks it’s fun to feed me, and insists on putting food in my mouth, not hand, laughing all along. He does point to my nose, eye, mouth when I ask him “where’s my nose, etc.; he’s also learned to reach out toward an object he wants, but with the whole hand. He still doesn’t point to a distant object, and doesn’t follow a distal point or eye gaze most of the time. This week we noticed some mild hand flapping (only the right hand) while walking.

DS does not bring objects to me, unless he needs help operating a toy or opening a box. He doesn’t seem to be sensitive to sounds, and we don’t think he has hearing problems. He still doesn’t shake his head Y/N, likes to watch things spin or wobble, and has a long attention span.

He seems to like new things, new toys, new experiences; not a stickler for routines. Likes to go out of the house, swings, walks, etc. We did notice that he’s not as friendly with same-aged kids, and swats at their hands if they try to share his toy. He whines more and gets frustrated more often, but he's very easy to appease or redirect. He continues to be very interested in other people, watching kids play (tries to engage slightly older kids), and makes good eye contact, especially with strangers.

[Anonymous]

3rd update: Next steps
DS has OT once a week for 45 mins, and social/ education and speech therapy every other week for 30, 45 mins respectively. This seems little to me. Pediatrician and EI coordinator said to give therapy a change and let therapists get to know him better before they recommend next steps; said it’s too early to know whether it’s autism or another cause for the delays. It is clear to me that there is a communication barrier, and he’s getting frustrated because I don’t understand him. In the past two months, the differences between him and his peers became more obvious (or maybe I’m hyper aware?) I did have him evaluated through an autism study, and we’ll get the results next week.

[Anonymous]

Thanks for the updates OP. You are doing a GREAT job. The best thing you can do is what you are doing. Keep at it.

[Anonymous]

Anonymous wrote:OP here. I was going to start another thread, per 01/13/2014 09:47 PP’s recommendation, but never got around to it. I’ll post updates here, because I found helpful in my research to find updates to posts similar to mine. 01/29/2014 21:58, it may be nothing, but based on my experience so far, I would not wait for the evaluation. I found that many pediatricians are misinformed when it comes to autism, for instance, and wait too long for a referral. It took us two months from scheduling the evaluation to starting the therapy. I’ll post in the following two posts updates regarding second evaluation and therapy; and next steps. I beg anyone who’s been through this before and has any advice in how to navigate the system to post. TIA!

OP, it's 1/29/2014 21:58 here. Thank you so much for your updates. We're a few months behind your DC in age (DS was 13 months yesterday), but I see a lot of similarities. I think DS is probably on-target or close to it as far as motor skills are concerned... but on most everything else I think he's lagging. I wonder sometimes if I'm nuts because I'm the only one who seems to see it; DH and everyone else keep brushing off my concerns. We saw DS's Ped again at 12.5 months for an illness, and I asked her then about an evaluation sooner than 15 months, but she said she wouldn't refer until 15 months as "there is nothing they'll do before then". I'm getting frustrated, but feel like I don't have much choice but to wait another 2 months.

Anyway, I appreciate your updates, and will be following along.

[Anonymous]

Anonymous wrote:3rd update: Next steps
DS has OT once a week for 45 mins, and social/ education and speech therapy every other week for 30, 45 mins respectively. This seems little to me. Pediatrician and EI coordinator said to give therapy a change and let therapists get to know him better before they recommend next steps; said it’s too early to know whether it’s autism or another cause for the delays. It is clear to me that there is a communication barrier, and he’s getting frustrated because I don’t understand him. In the past two months, the differences between him and his peers became more obvious (or maybe I’m hyper aware?) I did have him evaluated through an autism study, and we’ll get the results next week.

OP, the MCHAT is typically done between 18-24 months, ask your EI coordinator about it. I know you had looked at it earlier but your DC was too young. I think your DC will be 18 months soon, right? Also, the amount of service you are getting right now is fairly typical for EI at your child's age. T

[Anonymous]

If you live in DC you can contact Strong Start directly to get your child evaluated through Early Intervention. You don't need to wait for your pediatrician to refer.

link:
http://www.learndc.org/earlychildhood/

If you live in MD or VA, google early intervention for your state (or county?) and contact them. Early intervention is for children from newborn to 36 months of age, usually.

[Anonymous]

OP, as the mother of a similarly aged child, I'm finding this thread, and your updates, very helpful. If you don't mind a suggestion, it would be helpful to those of us following along if you could include your DS's age in the updates. Sounds like he made good progress from your first post, even before the therapy really started.

[Anonymous]

DS was Dx ASD. I am still in shock.

One, based on the pediatrician’s input and others dismissing my concerns, I half expected them to say DS has some autistic traits, but not enough to be considered on the spectrum.

Two, I expected them to say at least that DS was borderline or on the mild end of the spectrum. But, according to them, there’s no doubt he’s ASD; they don’t know how he’ll evolve, and it’s too early to give a prognosis. What distracted us were his good social skills, babbling & vocalization, eye contact, willingness to learn, good eating & sleeping, easy-going nature, no GI issues (i.e. all the superficial “signs” of not being ASD). His EI therapists, for instance, were surprised to hear of his diagnosis, because he made so much progress from one week to the next. But he does exhibit the core traits of ASD: significant impairment in verbal and non-verbal communication and social interaction.

To PPs with similar concerns I’d say get an EI evaluation now. If there are delays in multiple areas, you have enough to warrant a referral for an ASD eval. If not, you have only wasted a couple of hours to be worry-free. It can take months to get evaluated, and I regret not having done it earlier. DS was 15 months when I started the thread, 16 months (I wrote 17 before - that's a typo) at the first and second EI evaluation, and 17 months at the ASD evaluation.

[Anonymous]

Anonymous wrote:DS was Dx ASD. I am still in shock.

One, based on the pediatrician’s input and others dismissing my concerns, I half expected them to say DS has some autistic traits, but not enough to be considered on the spectrum.

Two, I expected them to say at least that DS was borderline or on the mild end of the spectrum. But, according to them, there’s no doubt he’s ASD; they don’t know how he’ll evolve, and it’s too early to give a prognosis. What distracted us were his good social skills, babbling & vocalization, eye contact, willingness to learn, good eating & sleeping, easy-going nature, no GI issues (i.e. all the superficial “signs” of not being ASD). His EI therapists, for instance, were surprised to hear of his diagnosis, because he made so much progress from one week to the next. But he does exhibit the core traits of ASD: significant impairment in verbal and non-verbal communication and social interaction.

To PPs with similar concerns I’d say get an EI evaluation now. If there are delays in multiple areas, you have enough to warrant a referral for an ASD eval. If not, you have only wasted a couple of hours to be worry-free. It can take months to get evaluated, and I regret not having done it earlier. DS was 15 months when I started the thread, 16 months (I wrote 17 before - that's a typo) at the first and second EI evaluation, and 17 months at the ASD evaluation.

OP, I am very sorry. I can't imagine what a shock this must be for you. I don't know what the right thing is to say here... I don't know any friends or family who have kids with ASD, but as I'm worried about my own son (I am the PP with concerns about my now 13 month old), I just really, really feel for you right now. Please, please keep us updated on your DS. I will be thinking about both of you.

And in regards to my son, I read the post up thread that indicated I may not need a referral from our Ped. We are in MoCo, and so I will call Infants and Toddlers tomorrow to see whether I can schedule an initial evaluation without a Ped referral. After spending all day the past three days with my son, and seeing on Saturday how different his very slightly older (3.5 months) cousin is, and now reading of OP's son's dx, I am really quite concerned. I KNOW he has delays, especially with communication, despite everyone else continuing to tell me not to worry.

OP, I am sorry.

[Anonymous]

I can't diagnose your kid on the Internet and I couldn't in person either because I am not a professional. But the social and verbal skills you describe do not sound really much different from my neurotypical child a that stage. If you and some of his other caregivers are "in shock" and it does not seem correct, then go get a second opinion. asd over diagnosis definitely happens.

[Anonymous]

Anonymous wrote:

Anonymous wrote:DS was Dx ASD. I am still in shock.

One, based on the pediatrician’s input and others dismissing my concerns, I half expected them to say DS has some autistic traits, but not enough to be considered on the spectrum.

Two, I expected them to say at least that DS was borderline or on the mild end of the spectrum. But, according to them, there’s no doubt he’s ASD; they don’t know how he’ll evolve, and it’s too early to give a prognosis. What distracted us were his good social skills, babbling & vocalization, eye contact, willingness to learn, good eating & sleeping, easy-going nature, no GI issues (i.e. all the superficial “signs” of not being ASD). His EI therapists, for instance, were surprised to hear of his diagnosis, because he made so much progress from one week to the next. But he does exhibit the core traits of ASD: significant impairment in verbal and non-verbal communication and social interaction.

To PPs with similar concerns I’d say get an EI evaluation now. If there are delays in multiple areas, you have enough to warrant a referral for an ASD eval. If not, you have only wasted a couple of hours to be worry-free. It can take months to get evaluated, and I regret not having done it earlier. DS was 15 months when I started the thread, 16 months (I wrote 17 before - that's a typo) at the first and second EI evaluation, and 17 months at the ASD evaluation.

OP, I am very sorry. I can't imagine what a shock this must be for you. I don't know what the right thing is to say here... I don't know any friends or family who have kids with ASD, but as I'm worried about my own son (I am the PP with concerns about my now 13 month old), I just really, really feel for you right now. Please, please keep us updated on your DS. I will be thinking about both of you.

And in regards to my son, I read the post up thread that indicated I may not need a referral from our Ped. We are in MoCo, and so I will call Infants and Toddlers tomorrow to see whether I can schedule an initial evaluation without a Ped referral. After spending all day the past three days with my son, and seeing on Saturday how different his very slightly older (3.5 months) cousin is, and now reading of OP's son's dx, I am really quite concerned. I KNOW he has delays, especially with communication, despite everyone else continuing to tell me not to worry.

OP, I am sorry.

To the PP, call tomorrow and disregard your Ped. My Ped discouraged my calling infants and toddlers and if I'd have listened, it would have delayed help for my Apraxic son by a crucial 6 months. At 18 months his speech was 4 months and Ped said it was due to being a boy.

Hugs OP and you can feel through your posts what a wonderful mom you are.

[Anonymous]

Fwiw: my older son was diagnosed at a young age with PDD-NOS. They were wrong.
My younger son was discharged from early intervention at 2 because he tested within normal limits. In reality, he is in the moderate range of autism.
Sometimes professionals get it wrong. And sometimes kids make amazing amounts of progress. Hang in there and enjoy your little one.

[Anonymous]

OP, I can't imagine how hard that must have been to hear. Hugs to you. It sounds like you have regrets about not calling sooner and since I work in Early Intervention I can tell you that you are very much on the early side in terms of getting started with services. Many of the kids I see haven't been started until much later - 24, 36 and even 48 months! You are doing all the right things. Early intervention can really make all the difference and it already sounds like there has been noticeable progress made, which is a really great sign. I also agree with a PP that you should get a second opinion however I would wait until DC is a little bit older and has had more time in intervention services-so that you can get more information about strengths and needs. Children's or Johns Hopkins can do a full eval (and they take insurance) or EI can have a psychological done. If you put his name on the wait list now at Children's or Hopkins it will be a few months and he'll be older by that time anyways. In the meantime talk to your doctor about having bloodwork/genetic testing done on your son to rule out any medical diagnosis.

[Anonymous]

Op your son is very young. As in very. I would really take this with a grain of salt.