Who to contact for Evaluation

[sahara78]

Hi all.  I've lurked on this board for some time, but wasn't sure if my concerns for DD really fell under Special Needs.  Sorry if it's too wordy; I guess I have a lot of pent up concerns.

For some background - DD was born at 29w2d, weighing 2 pounds.  She struggled with digestion, so much so that the Neonatologists expressed concern about it potentially affecting her brain development. In addition, she showed evidence of a prenatal brain bleed, but it's unknown if it would impact anything.  Once DD got on a formula that worked, she seemed to do well. She has hypotonia & we did PT to help with crawling/walking. We were followed by a developmental pedi at the NICU followup clinic for two years.  Referred for additional screenings in hearing (got tubes), speech & OT.  For both speech & OT, she improved between the Dev Pedi & therapist screenings.

DD is 4, turning 5 in July.  If she'd been born full term, she would've been born 5 days after the Kindergarten cutoff. DD goes to group daycare, and has attended the same daycare since age 2. She also attends Pre-K onsite, with mostly kids from outside the daycare (so relatively unknown to her).  DD has always been very shy, though she has some friends & best friends at daycare.  She generally doesn't talk to the other kids when I'm there, though the workers say she does when I leave.  She also doesn't speak to our neighbor kids, or respond even when they say Hi. I've had her practice waving & yelling hi at home, but it hasn't carried over. One neighbor girl, who's also going into K this year, recently asked DD if she was two.  DD waved 4 fingers in her face, but didn't respond verbally.

I'd not heard of any concerns from the Pre-K teacher; the only feedback was positive - related to her knowing the alphabet & all the letter sounds.  The only "kindergarten readiness" skill she's still working on is writing her name. I've been working on that with her, but she really hates writing. Last night she was growling at me when we practiced. 

My most recent concerns came after a Mother's Day tea at Pre-K.  DD was the only kid who didn't sing the songs or do the hand movements. I never saw her speak to anyone (besides me) the whole class.  I went to the playground with her class (along with some other moms), and she didn't play with anyone or say anything when other kids cut in front of her in the swing line. I actually cried as I was leaving, and I sent an email to the teacher to ask if she was typically more engaged.  The teacher was nice in her response, but it sounded like what I saw was typical. She also wrote that DD is often in her own little world. I do know when she gets stressed, DD will often act out TV shows.  She doesn't use any sort of show scripts when talking that I've seen. The teacher offered to meet with us to discuss, which I think would be helpful for DH. 

In the past, DD has done a swim class. She didn't follow directions well, so eventually (after several months in level 1), the swim director suggested we wait until she was more mature.  Since then, she's been in dance, with a teacher that is no nonsense, but good with kids. DD never speaks in the studio. Dance generally goes well, though most all of the kids in her class are a year younger.  

I'm concerned DD may have anxiety or even autism. She does seem much less mature than other kids her age. Her cousin is autistic, while my sister has struggled with mental illness. Would a psychologist or developmental pedi be more appropriate for an eval? We moved across the country 3 years ago, so I can't ask for a referral from the NICU clinic. 

[akafred]

You will get good advice from others, but my advice would be to start with a dev ped but don't necessarily stop there. You can possibly call your old one for a referral. If that isn't fruitful then a good child psychologist. I wouldn't stop because it sounds like there are red flags for both anxiety and autism. My experience with DD, who has ADHD, anxiety, and sensory issues but def not autism, is that the dev ped basically screened us out and "6 monthed" us, stringing us along when instead we needed to see a psychologist. The dev pedi office we went to, based on our experience and that of others I have heard from, seems to be very good for autism and other major developmental issues (CP, DS, etc) but not good with psychological problems like ADHD and anxiety. So they basically said she was fine and we were doing everything right but it was our fault . Not helpful. The psychologist we found did a thorough screening (6 appointments with DD plus one with us and multiple parent/teacher questionnaires) before dx her ADHD and anxiety.

[sahara78]

Thanks for the insight, akafred. DD does much better one on one with adults, so I could see someone potentially being initially charmed/not concerned.

[mrsbuttinski]

I would be concerned as well.

You've thrown down a number of red flags for ASD- lack of interaction with peers, poor imaginary play when stressed, dislike of writing (potentially dysgraphia) as well as 2 known risk factors- being a preemie and having a family hx of ASD.

I would share your concerns with her pedi and ask for a referral to a local dev pedi that works in a team setting with a psychologist. If she's headed for kindie in the fall, I would write the district as well and ask for a multifactored eval citing your and the teacher's concerns.

If your DH doesn't share your sense of urgency, you might want to have the teacher talk to him. Ask her not to be so positive about the strengths so as not to paint too rosy a picture.

[sahara78]

Thanks for the info, mrsbuttinski.

I had considered redshirting DD, both because of immaturity & her smaller size. Do you know if it's really beneficial to redshirt, assuming the immaturity is caused by autism? Not sure if it would just be delaying a transition that will still be hard in a year.

DH thinks everything's fine. He doesn't often go to dance, where we're always the last to leave, or birthday parties where DD talks to no one. Geez, writing this all out makes it seem worse than it feels day to day.

[mrsbuttinski]

Hard to say on the red-shirting. Specific to kids with ASD, there are pluses that are temporary, as well as minuses.

We red-shirted DS pre-dx- only child, boy, born less than a month before the cut-off, preschool teachers felt it made sense.

I suspect the transition was a bit easier at 6 than it would have been at 5; but the red-shirt/indie school choice we made delayed getting a dx. DS's presentation was pretty subtle in a lot of ways; he was never flagged for delays in speech or motor skills and he was awesome with adults and older kids. Under IDEA, kids with an IEP can be in the system until they age out at 21, so there is no real benefit to waiting so long as accommodations and services are in place.

Red shirting gave him a year to mature, but with ASD the delay between a child on spectrum and his/her peers exists as a % of chronological age- not just socially but also emotionally maturity. Because of DS's type of presentation, his delay is somewhere between 1/4 and 1/3 his age; 1/2 is more typical of classic autism presentations even without intellectual disability. Kids with ASD don't "catch-up" to peers; during elementary the gap actually widens and the child becomes more different in terms of maturity and skills even with meaningful and effective interventions. DS has started to close the gap a bit but mostly because he's still learning and growing while most of his peers are fully independent adults.

[sahara78]

mrsbuttinski, once again, thanks for your detailed response.

I brought up my concerns with DH, who says DD is fine & just like he was as a child. He said we could pursue "help" if I want. I set up a meeting with the Pre-K teacher next Monday, which both DH & I will attend. Also spoke with the Pediatrician's triage nurse, and should receive a call back about a referral soon. I'll look up a template on how to request an evaluation from the school district.

[mrsbuttinski]

Wrightslaw has templates. I think their book Emotions to Advocacy has them as well.

I've heard the old "just like me" line for a while until I put DH in charge of cub scout car pool and knocked the scales from his eyes.

Good luck going forward.

[sahara78]

Just an as update, and because I need to get all this out - I met with the pediatrician Tuesday. Pedi said she was going to refer DD before I made it through all my concerns. The referral is to a children's hospital development team, which does day long evals with developmental pedis, psychologists, and other professionals. Hopefully the waiting list won't be too long. At the end, after DD responded appropriately to a few questions, Pedi did offer "Maybe she's just shy." Pedi also suggested I read "Helping Your Anxious Child", as it's often recommended by the children's hospital.

DH & I met with the Pre-K teacher & daycare director on Wednesday evening. They both say they love DD, but are concerned about her ability to handle K. Pre-K teacher showed some of her writing, which was letters then scribbled over. Said she seemed very frustrated, and has trouble listening to directions and engaging in activities. I think we're going to have her repeat Pre-K, in part because of the immaturity, but also because she's very small. I worry about her getting run roughshod by other kids - sucking her fingers & refusing to talk. I cried during the meeting.

DH talked to his sister, whose DS is autistic. She's heard that the program where DD will be eval'd is best in our state. She also said she had concerns about DD going back a few years. Nice to hear; DH was really pissed about it.

[brachysira]

I just wanted to add that red shirting a child who would have been born after the cut-off seems appropriate to me in your situation, especially as you are seeking answers and will have more information in a year. Here, many kids start K at 6, or attend developmental K at 5 and K at 6, especially kids with summer birthdays.

[mrsbuttinski]

May 19, 2017 11:24:13 GMT -5 sahara78 said:

Just an as update, and because I need to get all this out - I met with the pediatrician Tuesday.

Thanks for taking the time to fill us in.

Pedi said she was going to refer DD before I made it through all my concerns. The referral is to a children's hospital development team, which does day long evals with developmental pedis, psychologists, and other professionals. Hopefully the waiting list won't be too long. At the end, after DD responded appropriately to a few questions, Pedi did offer "Maybe she's just shy." Pedi also suggested I read "Helping Your Anxious Child", as it's often recommended by the children's hospital.

Gah, why do pedis throw parents that bone? I get that it's a big deal to get a dx, but it doesn't help parents when they proffer a professional opinion without doing the eval. DS's pedi did this to me; he actually told me the only thing wrong with DS was that he was the very bright and highly valued child of older parents. Then he bet me the dev pedi wouldn't come up with anything. He has since apologized. 

DH & I met with the Pre-K teacher & daycare director on Wednesday evening. They both say they love DD, but are concerned about her ability to handle K. Pre-K teacher showed some of her writing, which was letters then scribbled over. Said she seemed very frustrated, and has trouble listening to directions and engaging in activities. I think we're going to have her repeat Pre-K, in part because of the immaturity, but also because she's very small. I worry about her getting run roughshod by other kids - sucking her fingers & refusing to talk. I cried during the meeting.

I'm going to play devil's advocate against brachysira ,  and red-shirting, even though red-shirting is what I chose.

1. Another year of this Pre-K is probably not the answer. When something isn't working, more of whatever it is isn't likely to work better. It may be a warm and wonderful school, but she's not thriving there. 

2. In most communities, public school elementary teachers tend to be more highly qualified than those working in preschools. When you have a child who has special needs, you want them working with the best available teachers. 

3. If she heads to kindie, she could start with a comprehensive IEP to help her gain skills. Some districts might allow her to repeat Pre-K or attend a transitional kindie where an IEP could be serviced.   

4. The gap in maturity associated with ASD, if it turns out to be your DD's dx, is one expressed as a % of chronological age. The maturity gap around social and emotional maturity is going to broaden over time relative to peers- one year won't make a big difference for very long. 

5. If she is identified for special education services, she can leave her diploma unsigned and continue to get transitional services until 21. For some kids this can be more adaptive skills for an independent adulthood, for others it might mean starting a few courses at a local college.

DH talked to his sister, whose DS is autistic. She's heard that the program where DD will be eval'd is best in our state. She also said she had concerns about DD going back a few years. Nice to hear; DH was really pissed about it.

I'm sorry your DH is pissed. It's an unenviable position to be a mother of a kid on spectrum and see red flags in other kids. You're screwed if you keep quiet and screwed if you express concern. 

[sahara78]

May 20, 2017 18:02:38 GMT -5 mrsbuttinski said:

May 19, 2017 11:24:13 GMT -5 sahara78 said:

Just an as update, and because I need to get all this out - I met with the pediatrician Tuesday.

Thanks for taking the time to fill us in.

Argh, had a long reply, but then accidentally closed the window.  Hope I can remember everything.

Pedi said she was going to refer DD before I made it through all my concerns. The referral is to a children's hospital development team, which does day long evals with developmental pedis, psychologists, and other professionals. Hopefully the waiting list won't be too long. At the end, after DD responded appropriately to a few questions, Pedi did offer "Maybe she's just shy." Pedi also suggested I read "Helping Your Anxious Child", as it's often recommended by the children's hospital.

Gah, why do pedis throw parents that bone? I get that it's a big deal to get a dx, but it doesn't help parents when they proffer a professional opinion without doing the eval. DS's pedi did this to me; he actually told me the only thing wrong with DS was that he was the very bright and highly valued child of older parents. Then he bet me the dev pedi wouldn't come up with anything. He has since apologized. 

At my request, the pedi gave me a list of resources they offer to parents of newly ASD-diagnosed children.  She seemed to be concerned I would panic;  I am somewhat, but would rather be able to plan than not.  I know she saw DD at her best, so I didn't fall for her platitude.   Funny what your pedi said - at the meeting with the pre-K teacher, DH said he thought DD plays the way she does because she's the only child of older parents. 

DH & I met with the Pre-K teacher & daycare director on Wednesday evening. They both say they love DD, but are concerned about her ability to handle K. Pre-K teacher showed some of her writing, which was letters then scribbled over. Said she seemed very frustrated, and has trouble listening to directions and engaging in activities. I think we're going to have her repeat Pre-K, in part because of the immaturity, but also because she's very small. I worry about her getting run roughshod by other kids - sucking her fingers & refusing to talk. I cried during the meeting.

I'm going to play devil's advocate against brachysira ,  and red-shirting, even though red-shirting is what I chose.

1. Another year of this Pre-K is probably not the answer. When something isn't working, more of whatever it is isn't likely to work better. It may be a warm and wonderful school, but she's not thriving there. 

2. In most communities, public school elementary teachers tend to be more highly qualified than those working in preschools. When you have a child who has special needs, you want them working with the best available teachers. 

3. If she heads to kindie, she could start with a comprehensive IEP to help her gain skills. Some districts might allow her to repeat Pre-K or attend a transitional kindie where an IEP could be serviced.   

4. The gap in maturity associated with ASD, if it turns out to be your DD's dx, is one expressed as a % of chronological age. The maturity gap around social and emotional maturity is going to broaden over time relative to peers- one year won't make a big difference for very long. 

5. If she is identified for special education services, she can leave her diploma unsigned and continue to get transitional services until 21. For some kids this can be more adaptive skills for an independent adulthood, for others it might mean starting a few courses at a local college.

Thanks for all the thoughts to consider. I definitely wouldn't want to do more of the same. I wish there wasn't such a long wait for an evaluation.  I am probably delusional on the timeline, but (assuming DD is diagnosed with ASD) - I was hoping to have her in AM Pre-K & PM ABA.  In our district, it appears school services are run by the county.  It's kind of confusing, but ages 0-5 are serviced by one org & school age by a different one. DH is going to call tomorrow to schedule an eval through the county program. The website said to call, so hopefully we won't get the run-around.  The school year ends around June 15 here.

I know it sounds petty, but I do worry about DD because of her size. She's always been around 3% for height & weight.  Add in that her hair is still very fine, she gets called a baby a lot.  Today in the car, she said no one believes she's four.  I'm worried sending her to K now will help set her apart from the class (in addition to her social issues).  Ugh, parenting is hard.

We still have DD registered for K, and she'll attend the K readiness session next month.  Although she knows all her letters/sounds, I'm not sure if she'd be able to show it.

DH talked to his sister, whose DS is autistic. She's heard that the program where DD will be eval'd is best in our state. She also said she had concerns about DD going back a few years. Nice to hear; DH was really pissed about it.

I'm sorry your DH is pissed. It's an unenviable position to be a mother of a kid on spectrum and see red flags in other kids. You're screwed if you keep quiet and screwed if you express concern. 

I know that SIL meant well; she loves us & DD.  DH was pissed she didn't mention the concerns when she initially had them, but that's not to say he would have taken it well then.  

Thank you so much for all your help & insight!

[sahara78]

May 19, 2017 16:13:07 GMT -5 brachysira said:

I just wanted to add that red shirting a child who would have been born after the cut-off seems appropriate to me in your situation, especially as you are seeking answers and will have more information in a year. Here, many kids start K at 6, or attend developmental K at 5 and K at 6, especially kids with summer birthdays.

Thanks - I wish they had developmental K in my state!  If DD hadn't been due so close (can't remember if it's on or five days before) the cutoff, I'd be less inclined to redshirt.

BTW, I think I remember you from the preemie board on TB. 

[mrsbuttinski]

At my request, the pedi gave me a list of resources they offer to parents of newly ASD-diagnosed children. She seemed to be concerned I would panic; I am somewhat, but would rather be able to plan than not. I know she saw DD at her best, so I didn't fall for her platitude. Funny what your pedi said - at the meeting with the pre-K teacher, DH said he thought DD plays the way she does because she's the only child of older parents.

It's especially odd because "older parents" is a risk factor. Especially dad. There are those who feel later marriage and older parents are a key piece to the uptick in ASD rates.

Not wild about Autism Speaks, but their First 100 Days booklet is very useful.

Thanks for all the thoughts to consider. I definitely wouldn't want to do more of the same. I wish there wasn't such a long wait for an evaluation. I am probably delusional on the timeline, but (assuming DD is diagnosed with ASD) - I was hoping to have her in AM Pre-K & PM ABA. In our district, it appears school services are run by the county. It's kind of confusing, but ages 0-5 are serviced by one org & school age by a different one. DH is going to call tomorrow to schedule an eval through the county program. The website said to call, so hopefully we won't get the run-around. The school year ends around June 15 here.

I know it sounds petty, but I do worry about DD because of her size. She's always been around 3% for height & weight. Add in that her hair is still very fine, she gets called a baby a lot. Today in the car, she said no one believes she's four. I'm worried sending her to K now will help set her apart from the class (in addition to her social issues). Ugh, parenting is hard.

We still have DD registered for K, and she'll attend the K readiness session next month. Although she knows all her letters/sounds, I'm not sure if she'd be able to show it.

The wait for an evaluation is a bitch. It's generally 6-12 months here. Sometimes you can be seen sooner if you can be flexible about a cancellation or if see someone who doesn't take insurance and generally has shorter wait times. If your SIL is local, she may be able to advocate with her child's doctor to get you seen sooner.

Even if the website said to call, you are still operating under IDEA so I would confirm with a written request referencing the phone call. The concern is, even with two different streams for sped services, there's still a mandated 60 instructional day window with which to contend. And it's IEP season- priority will go to kids already in the system who need IEPs updated for next year, especially those who will be transitioning to new settings like kindie.

Many people do a full day hybrid plan with the day split between a self contained setting/ABA and a mainstream classroom. Typically, they do the theraputic work in the am and attempt to globalize behaviors in the mainstream in the afternoon.

Her very small size is a challenge, certainly easier than had she been a big strapping kid who looks older and is delayed.

Depending on your district, the letter sounds might not matter at this point. Most are looking for kids who separate easily from parents, engage, follow directions, have some independent self care skills, etc. My mom's old district did some quick and dirty evals around fine and gross motor skills- do the hold a pencil properly, draw a person, hop on one foot, skip, etc.

[sahara78]

I've heard from the children's hospital where the referral was sent. DD was referred to the Autism Clinic. They'll send a packet of forms to fill out; once they're returned, we can get on the calendar for an appointment. About a 7 month wait.

Last week, I asked the pediatrician for a PT referral. Hoping to get DD more comfortable on playground equipment & maybe start pedaling. Not sure at what age pedaling (anything trike/bike/big wheel) is really expected, but DD appears to be the oldest kid on our street who can't.

mrsbuttinski, SIL is in a neighboring state, but we'd be willing to drive. She reached out to her son's psychologist, but no word back yet. SIL does have a relationship with the head of a developmental clinic in Texas, who offered to get us in this summer as a favor. Is it crazy to travel far (we're in the Pacific NW)? I really want to start interventions/therapy sooner rather than later.

[mrsbuttinski]

Jun 6, 2017 10:52:04 GMT -5 sahara78 said:

I've heard from the children's hospital where the referral was sent. DD was referred to the Autism Clinic. They'll send a packet of forms to fill out; once they're returned, we can get on the calendar for an appointment. About a 7 month wait.

I know that feels like an eternity. Ask to get on the cancellation list if both you and your DH can easily re-arrange your schedules last minute. 

I would also contact your LES (school district) in writing asap. If she's over 3, she falls under the protections of IDEA in terms of getting an educational eval completed to determine if she qualifies for an IEP and services.


Last week, I asked the pediatrician for a PT referral. Hoping to get DD more comfortable on playground equipment & maybe start pedaling. Not sure at what age pedaling (anything trike/bike/big wheel) is really expected, but DD appears to be the oldest kid on our street who can't.

Pedaling is seen in typically developing kids sometime between 30-36 months. She is quite delayed. This skill requires crossing the midline which can be a challenge for those on spectrum. DS was late to do this as well; he was almost 5 when he nailed it. He did better with a lighter BIg Wheel than the top of the line heavy Kettler he had a home. He was also late to descend stairs one foot to a step and pump his legs on a swing. 


SIL is in a neighboring state, but we'd be willing to drive. She reached out to her son's psychologist, but no word back yet. SIL does have a relationship with the head of a developmental clinic in Texas, who offered to get us in this summer as a favor. Is it crazy to travel far (we're in the Pacific NW)? I really want to start interventions/therapy sooner rather than later.

I would try to get in locally unless the dev pedi in Texas is someone world renowned in the world of ASD- someone like Catherine Lord, James Coplan or such. Often, a dev pedi follows a child over the years and will be well versed in what the best local resources in a community are. And there's the chance your insurance will only cover comprehensive testing once, so local makes more sense unless you are moving. 

[freezorburn]

sahara78 are you in the Seattle area, by any chance? If it would be helpful to you I could share some local resources.

[sahara78]

Jun 7, 2017 2:33:56 GMT -5 freezorburn said:

sahara78 are you in the Seattle area, by any chance? If it would be helpful to you I could share some local resources.

Thanks for the offer!  Unfortunately, I'm in Oregon.

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