SNR: Got the initial written report from last week

[lurknomore]

Hugs friend.

[simpsongal]

Very overwhelming. I wonder if there's a program where you can do some of these things under one roof, ya know?

You've got so much on your plate - thank goodness for your parents. Hugs.

[anna7602]

Oh Swizz! Many, many hugs. That's a lot. Did anyone sit down and walk through this with you or were you simply handed this written evaluation? Can you meet with anyone who can help you prioritize and break down everything that is being asked of you here?

[1yeartogo]

I am sorry you are dealing with so much. I don't have much to add as we don't have direct autism experience, but I do understand your challenges with all the appointments. I had a son that needed to get to therapy and OT weekly and when we were both working full time it felt impossible (I had to flex so much work) I ended up quitting a year ago when I was having to leave nearly 3 out of 5 days for something. For us it is better now since he gets supports in school.

As for early intervention I did just want to say my sister is an autism specialist (therapy) and she always comments about the differences and impacts of early intervention. So getting these supports in place early is really key.

I wish you all the best. I'm sure you are a great parent, remember how lucky Cora is to have you on those tough days.

[Brie]

Oh swizz, hugs. It is ALWAYS a punch in the gut to read these things.

I'm sure auntie will have great practical advice, as I don't know a ton about ASD, but are there any therapeutic preschools near you? Ours has been essential in maintaining my sanity. They are able to provide all therapies there, including ABA for kids who need that.

Also--remember that these reports tend to be a bit doom and gloom because they are trying to secure services for your kid. If they focused on the positive, whoever reads it might not feel a sense of urgency to provide them, KWIM?

Big hugs.

[oliviapope]

Big hugs. It is overwhelming. Definitely check Into therapeutic/specialized preschools. They often offer a lot of what is on this list within the preschool time frame. It really helps a lot of parents because some of the therapies can be done during the preschool day.

Insurance can be frustrating as well. However with a definitive diagnosis things can work out more smoothly.

[CheeringCharm]

Big hugs. That is a lot of information to process and things to do/programs to set up for C. I would be stressed too. I wonder if a local support group might be helpful? Thinking of you.

[leonard131]

I am sure it is a lot to handle. First remember you are an amazing mom and you are doing everything to ensure she gets all the help she can. You don't need to absorb it all in one sitting.  It will take time. 

Without seeming stalking like and not quite sure if they suggested you moved FF county for better assistance, but if that is the case I worked with a someone whose son  is ASD and is working with FF county. He started at about the age C is.   He has had amazing things to say about it.   He is actually a single dad (mom isn't in the picture) and has really developed a great routine with all the different individuals assisting him.  If and when you would like I could make an introduction. Completely understand if you have no interest and not trying to overstep any boundaries.  Just know that you aren't alone in this and I am sure so many others will have recommendations of wonderful support networks. 

[bowies]

Is there any room for overlap (for example, 1a and 3)? Hugs, it is incredibly overwhelming.

My brother had a late diagnosis of ASD - 8th grade I think - because of a number of factors, one of which was a lack of resources in our small city. I really wish my parents had had a plan like this from the jump, especially that parent training. They never received anything remotely like that. Even with such a late diagnosis and lack of a formal plan, he's doing so well. He lives a full, normal life (well, as normal as can be when you have our parents). I can only imagine the impact EI would have made.

My mom worked PT off and on so she could shuttle him to different appointments and still afford the private tutors/therapies. Is there any way this could work for your family?

[kershnic]

I'm sure it's a punch in the gut to read all that. I agree with others that a therapeutic school should offer much of that during the day, which will help. I hope that your insurance and/or disability services will financially cover a lot of it. Just take things one day at a time, one step at a time, and you'll figure out how to do this.

[auntie]

Before I dive in, who generated this report?

Was she seen in a medical setting by a developmental pediatric team or was this a governmental agency like a Birth to Three Program? Or was it somebody else entirely.

bowies, I would expect a student who wasn't dxd until middle school to have a good outcome. If he'd had significant impairment or atypicality, someone would have flagged him sooner. I live in a very well served community, and even with me asking "what's up with this kid?" of DS's PCPs and teachers, he didn't get a medical dx until he was 7. My cousin got a dx after DS was identified; he was 40 and a successful tech guru.

[countthestars]

Big hugs friend. This is all very overwhelming. You're doing a great job.

[raangoli]

Huge hugs. It's very overwhelming but you're doing a great job.

[karinothing]

Apr 19, 2016 8:44:30 GMT -5 swizz said:

Apr 19, 2016 8:23:36 GMT -5 @this said:

Wow, am I reading correctly that they're recommending 31 hours/week? I can see how that would be incredibly overwhelming. I would be stressed too.

Hugs, friend.

It's less the punch to the gut of what they said, than the time committment they're suggesting! I like to think I'm pretty realistic with her shortcomings and successes so I've seen all these things and accepted them. But she's only at daycare like 45 hours a week. I don't see how this is even remotely feasible without finding a special needs preschool. 

I am not sure how it works in Fairfax, but in Arlington if a kid qualifies for EI the county will take care of preschool. At leas that was the case with my friends situation. THe county even bused them so she didn't have to drive. The classes were small like 1:3 or 4 ratio? Then the services were provided in the school. Maybe Fairfax has a similar situation, if you can  move there.

[VillainV]

Hugs swizz. It looks like a lot to process. I think a local support group could be really beneficial to you and could help you figure out the best resources/preschools and how to navigate the system.

You're a great mom.

[lishie]

Hugs to you. That's a lot to get at once.

I know in our area a lot (but not everything) of the EI stuff is funded by the county at no charge to the parents. You may want to check to see what costs may be covered by the county. Good luck with everything.

[bowies]

Apr 19, 2016 8:27:28 GMT -5 auntie said:

Before I dive in, who generated this report?

 bowies , I would expect a student who wasn't dxd until middle school to have a good outcome. If he'd had significant impairment or atypicality, someone would have flagged him sooner. I live in a very well served community, and even with me asking "what's up with this kid?" of DS's PCPs and teachers, he didn't get a medical dx until he was 7. My cousin got a dx after DS was identified; he was 40 and a successful tech guru.

Unfortunately, he was flagged for *something* at a young age and put into a severely disabled elementary school that did nothing for him. My parents had to fight to get him into a special education classroom at another elementary school - I believe they had to formally sue the school district. Even then it only addressed learning disabilities (which he also has) and not the ASD.  It was a total cluster. It wasn't until high school, when my parents finally located an ASD-specialized therapist that he really started to blossom. He still might be one of the only ones in town.

[hopecounts]

DD goes to an ASD preschool that provides what is recommended for your girl.
It isn't easy (or cheap) but it has done so much for DD.
I'd find out if you have any therapeutic preschool options and then go from there.
DD's OP ABA provider would go into daycare/preschool and work there if everyone was OK with it so that might be an option too.

[dancingirl21]

This does seem overwhelming, big hugs. Hopefully you can find a daycare or program that can do many of these things at the same location. You're a great mom.

[auntie]

Apr 19, 2016 7:47:57 GMT -5 swizz said:

This is SO overwhelming. 


I am writing in the quote mode, so I don't miss anything. Random thoughts follow. I will absolutely delete this post should you ask. 

It's hard. And overwhelming. But you will get better at this. 

1. Cora continues to qualify for early intervention/special education services via an Individualized Family Service Plan (IFSP), and later IEP, under the Federal Classification Code, Autism. Her programming should include the following services:


Key word here is "should". 

Here's the thing. This report is a wish list. 

Since you are transitioning to an IEP in less than 5 months, I would prepare for that. It would be great if you can get EI services until the fall and then transition to your LEA (school district).

The suggestions offered here are not binding on either EI or the LEA. This isn't like some prescription you take to the LEA for them to fill. This is a pie-in-the-sky dream scenario that is probably not within your means to make happen. But it can be leveraged as a starting point for the IEP meeting. 

a. Applied Behavioral Analysis Intervention: Intensive, weekly ABA-PRT behavioral therapy services are recommended (~20 hours per week) to address functional communication deficits and deficits in social/play skills. This approach should be data-driven in order to monitor progress.

This is the gold standard for a child on spectrum her age, especially given her speech delay and relative lack of engagement. ABA is the one intervention that actually has some data to support it. In some places, ABA is a classroom placement for preschool and beyond. Some districts claim it is not a reasonable educational approach and will offer something else. 

If you live in a state that mandates ASD coverage- and you don't have a medical policy that is excluded (many are)- you may be able to buy the ABA program that way. Also look into Early Start Denver Model; it's kind of a hybrid of ABA and Floortime that has been shown to help younger kids on spectrum. 

FTR- DS's pedi used to write up his "suggestions" in such a way that they were almost laughably clueless about how education is delivered in this country. He suggested the district creature a fully mainstream setting with no more than 10 NT peer models and a dually certified SPED/gen'l ed teacher at the helm. Or send him to a private academic school with a para to help facilitate social interaction. He also thought OT and PT should be offered even though DS had no delays around either areas. 


DS's psychologist was more realistic, and we tended to follow his education advice because he was more aware of how IDEA really works IRL. Always remember, IDEA offers free and appropriate, not necessarily the gold standard or even what is best for Cora. 

b. Speech and Language Therapy: Cora should receive weekly community-based speech-language services with a licensed
speech-language therapist through her county’s Infants and Toddlers Program. See full report for specific speech-language target goalsfor treatment.


This sounds like they are suggesting EI do speech therapy with an SLP at her day care. This would make sense. Once she is 3, this would transfer to a preschool setting should she attend one that is either part of your school district or an out-of-district placement. 

c. Direct special education services for social coaching: Cora needs explicit teaching of social and play skills. She should work
intensively with a social coach. Some specific social skill targets include improving use of joint attention skills, following/initiating play, expanding the variety of play activities, building her emerging imaginative play skills, increasing social responsiveness, and maintaining social reciprocity with others.


Great that they added this. It's critical stuff. At school a Michelle Garcia Winner Social Thinking curriculum for preschoolers would be great if they offer it. 


The other thing you could do would be to add some Floortime daily for half an hour or so nightly to help engage and teach her functional play skills and to cement the notion that interacting with other people is pleasant. This is free and something you can do for her during the time you'd be with her anyway. The book "Engaging Autism" explains how to do this. 



2. Regarding preschool classroom placement, Cora will require placement in a small, highly structured environment with a low
student-to-teacher ratio, where teaching instructors and aides have specialized training for working with children with Autism Spectrum Disorders (ASDs) once she meets age requirements. This would include experience and facility with teaching and behavioral management strategies grounded in the principles of Applied Behavior Analysis (ABA). A 1:1 discrete trial ABA curriculum is recommended at least 3 hours a day. However, the specific number of hours and program curriculum will best be determined by an ABA specialist who creates a learning program for Cora after assessing her needs and abilities. This style of teaching incorporates hands-on learning and repetition with behavior principles such as reinforcement, shaping, etc., to increase attention and both verbal and nonverbal skills. Additionally, this classroom would include an emphasis on visually mediated learning, which will support Cora’s attentional weaknesses associated with her diagnosis of ASD. Classroom interventions should incorporate evidenced-based strategies for working with children with ASDs (e.g., supports for transitions and flexibility, use of preferred interests for motivators, incorporates autism spectrum-specific strategies such as principles of ABA-PRT and TEACCH for learning and behavior).


Depending on where you live, you may be able to get something close to this on the school's dime in the fall. A lot of this is just standard operating procedure in any ECSE classroom whether it is ASD-specific or more integrated. 



3. Intensive, weekly in-home, ABA-PRT behavioral therapy services are recommended (~10 hours per week at home) to address
functional communication deficits and deficits in social/play skills. This approach should be data-driven in order to monitor progress.


Once Cora turns 3, this will be something you will have to provide either through your insurance or OOP. Or you may have to adopt an ABA-based lifestyle at home to reinforce the lessons at school. Some families have bought supplemental insurance to cover ABA, others have qualified for non-means tested Medicaid to help fun this kind of therapy. The social worker at the medical center should be able to help you figure out what is customary/possible where you live. 
 

4. It is essential that Cora’s team include her parents, a Board Certified Behavior Analyst, a licensed speech and language pathologist, and special educators who are trained and experienced in working with children with ASDs.


I would totally expect this to be the standard at any half decent or better school district. As she gets older, her team should also include representation from a gen'l ed teacher who can provide input on how some of these interventions could be delivered in the mainstream as appropriate. 


5. Parent Training:

a. Cora’s family needs weekly parent training sessions on how to implement the ABA methods that are successful with Cora, including providing prompting, consistent praise and rewards for targeted behaviors, and encouraging requesting behaviors and motor and speech imitation. In addition, Cora’s educational team will therefore need to work closely with her family to help them practice, and regularly monitor these skills.

Great. It's important for you to take advantage of any training available. It will help you both stay on the same page and understand the whys and hows of therapies. 

b. Cora’s family should inquire about participating in a Hanen parent-training program through their county to learn strategies to facilitate communication and language learning. More information and resources can be found at

www.hanen.org/Programs/For-Parents.aspx. The book, “More than Words” by Fern Sussman can be found on the mentioned links.

We never did this. Excepting pragmatics, DS speech was off the charts. But I do know people who have, there's a lot of overlap with the Floortime I mentioned. If you can get trained in this, it would be awesome. 

6. Speech Therapy: Cora would also benefit from private speech-language therapy services for 60 minutes per week. Intervention treatment targets for school and private therapy will be included in the full report. 

This would be great.


7. Feeding evaluation/Therapy: Cora requires a feeding evaluation/treatment with a speech-language therapist to rule in/out a sensory and/or oral motor feeding disorder. 


Worth doing. 


8. Medical:

a. Consultation with a neurodevelopmental pediatrician is recommended for ongoing monitoring from a medical perspective. 

Always a good idea. IME, an MD's report, especially from a superstar facility, can be a big stick in negotiating services. It's funny, DS's psychologist never commanded the respect communication from the big gun dev pedi did. The psychologist happened to be the district's and IU's own ASD consultant. 


How is the world do two full-time working parents accomplish the above?! Also, I feel like there's no way insurance would cover even the majority of this... (there are some specific recommendations of private therapists/doctors to call, I removed those for privacy reasons.)

It's a marathon, not a sprint. It might make sense to sit down with a social worker associated with the hospital or a local support group and find out how things are done where you live first. Then you can explore the school based services and see what that gets you. 

Most people eventually cobble together school and private services. For a child as young as Cora, it might make sense to start with some of these suggestions and see what sort of progress she makes and then add more as she gets older if needed. 

It's hard with two parents working especially if the district forces you to do many of the therapies outside of school and on your own dime. I didn't work when DS was younger. It just wasn't what was best for our family. A number of my friends also left the workplace for a time. A couple eventually changed careers to something that gave them more flexibility or dropped back to part time. I know a number of people who moved when it turned out their district wasn't the best place to raise a child with ASD. 

[MamaMaui24]

Hugs, swizz.

I'll try to compose an email.
Easier than typing on my phone (+ privacy).

In short, we do FT therapy preschool where he receives 25 hours of ABA. We do private Speech and OT outside of school hours (at clinics, not in home) but are actually taking a break since December. (Two FT working parents.)

[Deleted]

Hugs. That is really overwhelming and I hope you can find a way for her to get the services they recommend. You're doing a great job catching this diagnosis early and getting her support.

[Willis Jackson]

Big hugs, Swizz.

[andwhat]

That seems so overwhelming. So many hugs. You are a great mom.

[tulips]

Big hugs, swizz!

[auntie]

Apr 19, 2016 12:36:29 GMT -5 swizz said:

Thanks auntie ! I appreciate the insight! I sent the report ahead of my meeting with the county in hopes that they'll be able to take a look at it before we sit down on Thursday. If they can help me at least in letting me know what services they offer and what we might be able to obtain through them, I think it'll be a good start.

Do you have some other way to get this information? I find LEAs are very tight-lipped about what exists. Often they'll try to shoehorn a child into an existing program or will claim "we don't do that here". Bottom line, need drives IEP goals which should drive services. If it doesn't exist, and you can create goals that require it, they need to make it happen. 

They may or may not have been required to accept our IFSP (Texas is birth to 3 through the state, but here, Child Find starts at age 2 so we're already in the school system), despite the fact that we'll be creating an IEP following this meeting (depending on what they deem eligible). At an absolute minimum, I'm going to insist they qualify her for ESY (extended school year) so she can start services now instead of having to wait until September (because that's some bullshit).

I'm not expert on IDEA Part C, but it might be worth checking to see if they VA was required to service her IFSP as they would have had it been an IEP for an older child. Wrightslaw may have information specific to this. If so, she may be entitled to have those services "made up" which would strengthen you case for ESY. 

Per a FB group I'm in, looks like I should probably be applying for a Medicaid waiver -- that they might pick up a good portion of private therapy costs that may or may not be covered by my insurance (though it requires yet another evaluation).

Good luck. Medicaid can be very helpful if there are good providers in your community who accept it. ABA programs often do. 

[Deleted]

Is there an ARC in your area. The family support office can often refer you to the best options in your area. Plus they often have preschools that offer 1,2 &3.

[auntie]

@invino,

Thanks. Just a parent. But I have been a moderator and contributor to a couple support and advocacy fora and websites. Plus I've been knocking around talking to other families for 16 years now.

[hermione]

swizz - I just wanted to offer my support and hugs.

auntie - you're good people,.

[aspentosh]

Hugs.

That's a lot.