Child just diagnosed with delays...

[Anonymous]

My 2.5 year old DC was just evaluated by Infants and Toddlers and was found to have receptive speech, cognitive, gross and fine motor delays. I'm feeling overwhelmed. What could be causing such delays? Is there usually a corresponding diagnosis? I keep hearing stories on these boards about parents having to fight for services once their kids age out of the I&T program and I'm just feeling really worried. Thanks.

[Anonymous]

dear parent, I've been in that road and it is a rocky one. can't tell you the source of my DC's delay, too young to tell, but we decided to focus on getting help and she is def. making lots of progress. the ITC offered us one hour per week of "training the parent-child sort of therapy" I think that this is not enough time is crucial and you need your DC to start working very hard to catch up on development. talk to a speech therapist, OT, try some ABA if you can, all of the above have worked for us. we are spending a fortune, but every time my DC tells me what she wants looking straight in to my eyes, everything is worth it. she's been in therapy since January and will start pre school this fall with normal peers hoping that she imitates what she sees out there. don't be discouraged looking for sources of the delay, help her or him to catch up, you have lots of work ahead of you all, but worth it.

good luck.

[Anonymous]

I highly recommend the floortime model. The best way to get started is to get an evaluation at DIR SUpport Services and get a home program set up by Jake Greenspan. We have seen tremendous progress. The OTs who work with Jake are also excellent. They are on Rugby Ave. in Bethesda. It is the best $ we ever spent.

[Anonymous]

Is there a waiting list to get an evaluation with Jake Greenspan? Is it very expensive? Thanks, PP's, for your help.

[Anonymous]

If you're in Northern Virginia, the ChildFind programs in Fairfax, Arlington and Alexandria are very good, supportive and free. Please contact them through the school system. They're very helpful

[Anonymous]

I totally sympathize. Who knows why there are delays. Just know that with early intervention, you really have a great chance of helping your DC get back on track. Also, don't agonize over problems you haven't encountered yet. We have experience with having a child in ITC transition to Child Find and experience with trying to get services for a Kindergartener. Totally different experiences! At age 3, kids are no longer eligible for services through ITC. By planning for that transition, it's likely to go more smoothly and you're more likely to have no break in services. Once a kid is "in the system", it seems easier to get/keep services than if they're already in school. Our youngest entered ITC at age 15 months and just shy of his 3rd birthday he entered a Special Ed preschool in Fairfax County. It was incredibly smooth and painless. On the other hand, trying to get services for a child already in the school system was nightmarish. The older the child, the hard it seems to be. But, you've got some time to work on it. If your DC is 2.5, I'd start making transition plans now. Don't let them tell that since school is out, you have to wait until it starts in the fall. That's not true! Your ITC case manager should be able to help. The important thing is continuation of services.

I'd also suggest you look for research studies. We participated in several through NIMH and had an incrediblly positive experience. They're very good at what they do and we were able to get all kinds of testing (FREE!) and in a very timely fashion. We learned a LOT about our kids, helped researchers trying to understand what's going on with our kids and got evaluations that documented our children's strengths and weakness. They suggested our youngest would benefit from a full time special ed preschool and I believe that carried a lot of weight with the Child Find staff.

I know you're in shock but you're not alone! I've been amazed at what services have done for our 2 kids. Just as amazing is what we've learned and been able to use with all our kids. Good luck and feel free to reach out to a supportive network whether it's face to face or online.

[Anonymous]

OP, if you haven't already, I would also make an appointment with a developmental pediatrician. They will usually make a diagnosis if there is one and recommend which services to pursue. It can take some time to get an appointment, but often something opens up sooner. Kennedy Krieger in Baltimore would be my first choice and then Children's in DC. While I agree the diagnosis isn't as important as getting the ball rolling with services, a diagnosis can be helpful with getting therapy covered by insurance. Support from your pediatrician and a developmental pediatrician helps prove to the insurance company that the therapies are "medically necessary." Good luck with your journey. It's very overwhelming in the beginning, but once you find a team of therapists that you and your DC like, things will improve, your DC will progress and you will have the support and resources to help your DC.

[Anonymous]

OP again...thanks so much for the support, I really appreciate it!

[Anonymous]

Usually you can get in to see Jake Greenspan fairly quickly, in a matter of weeks. I can't remember if the eval/home program cost $600 or $800 but it's very very comprehensive and it lays out what you can be doing at home to help. We may have been able to submit it to our flex fund, I'm not sure. We have seen tremendous progress in less than a year. Good luck OP!
dirss.com

[Anonymous]

what state / county are you in?

MoCo and Fairfax are known for having really solid early intervention programs.

[Anonymous]

Second the rec for any studies you can get into at NIH/NIMH. Very insightful and child friendly docs and it's free. Not muc of a wait either.

[Anonymous]

I have been down the same road. I am so sorry, but I promise things will get better. Do not waste any time!!! The diagnosis is much less important than what you do NOW. Early intervention makes all the difference. Contact the Pria school. The director is amazing, and my son is now mainstreamed in a regular classroom after her program. www.priaschool.org 240 644-8456.

[Anonymous]

I would avoid Greenspan, and the whole floortime model. It is a great way to interact with typically developing kids, but is not an intervention. Good luck. I would recommend ABA or VB.

[Anonymous]

Hi 22:02 PP, don't be so quick to write off floortime! Just as I would tell other parents not to write off ABA or VBA. You really need to check out each therapy model to see if it'll work for your kid. My DS had a little ABA in his last program, and it made very little impact on his life. He's been in a program that's floortime-centric since March and he's changed so, so much. I was skeptical about it when DS first got diagnosed--I wanted to move to Massachussetts where the state provides 25 hours of ABA a week!

No two kids with issues are exactly alike. Parents of atypical kids really need to figure out the best treatments for their own kid--and what worked for another kid who seems so much like your own might not work for yours. I think this is part of the craziness of having a kid with special needs. there's no magic formula for therapy or treatment.

[Anonymous]

Anonymous wrote:Hi 22:02 PP, don't be so quick to write off floortime! Just as I would tell other parents not to write off ABA or VBA. You really need to check out each therapy model to see if it'll work for your kid. My DS had a little ABA in his last program, and it made very little impact on his life. He's been in a program that's floortime-centric since March and he's changed so, so much. I was skeptical about it when DS first got diagnosed--I wanted to move to Massachussetts where the state provides 25 hours of ABA a week!

No two kids with issues are exactly alike. Parents of atypical kids really need to figure out the best treatments for their own kid--and what worked for another kid who seems so much like your own might not work for yours. I think this is part of the craziness of having a kid with special needs. there's no magic formula for therapy or treatment.

I totally agree with this. We've learned about all kinds of interventions and have picked and chosen which ones are effective with our kids. We've gotten something from everything we've learned about, especially Floortime.