Doubt (Sorry, long)

[dashofreality]

Hi, I posted once before about my DD, 4, who has been selectively mute for about a year, along with some other red flags. Everyone was very helpful in pointing out that there were red flags, and even if she is borderline, to follow my gut. Fast forward a few months and my DD has done what she always does, waits until I finally make the decision to pursue testing to make giant developmental leaps. Which in the past has always lead to her testing high enough to not qualify for services.

Shortly before her 4th bday we moved (again, military) and started a new preschool. Prior to this she had spent most of the last year not speaking to anyone outside the family, and most notably we spent 3 months at a preschool that she liked attending, but never said 1 word. She would also not engage with any kids except for her brother or cousins. We started the new school and she started talking, a little bit at first, but in the last few months she has made amazing progress. Answering questions from adults, and actually talking to other kids. Shortly after she started the new school we had her 4 yo appointment where I brought up my concerns. She talked to the doctor and interacted with him and he was not overly concerned. He did give us a referral to a psychologist for anxiety.

We are in a small town so the psychologist didn't have a ton of experience. She took a history, did a short assessment and basically went and talked to a few people who aren't covered by our insurance. She came back with a recommendation for further testing, OT and recommended a local ABA office. My doctor is now processing a referral to a dev pedi. My concern now is whether or not to pursue testing at this time. I might be a little gun shy because I pretty much have had people tell me I am crazy for bringing her in. She went at 15 months to a dev ped based on her ped recommendation for no words and gross motor, and I had a EI eval right around age 3. I guess I am afraid that testing after her recent jump may cover up her delays, and at some point I do look like a crazy parent pushing for repeated testing with no findings.

TL;DR - 4 yo DD, preemie, delayed with some red flags, has just made significant developmental progress and I am not sure if she will qualify for services at this point. Is it worth it to pursue testing at this point or hold off until she starts lagging behind again?

[hopecounts]

Start now, you will likely have to wait 6+ months for an appointment with a Dev. Ped so you can always cancel closer to time if she continues to progress but if there are still concerns the Dev Ped will be able to give you more info about what is going on and how best to help her.

[cam]

First of all, that is awesome that she is talking at school and has made other leaps! What concerns or flags are present at this time? It may take some time to get in with the developmental pedi, so it wouldn't hurt to make the appointment now either way, even if the wait is shorter (as can be the case for some rural areas). It sounds like the psych is perhaps seeing something if you are being encouraged to go that route as well as OT and ABA therapies. You can make detailed notes, including information about the recent leaps. You can also track what concerns you still have. If she has a disorder of some sort, the red flags may change over time, but there will always be red flags to some degree, if that makes sense. My LO will make huge leaps, then level off a bit, repeat, but he still always has the markers of the ASD. Also, it is not uncommon for us as parents to be at first brushed off. Sometimes it is a PCP who understandably isn't as well versed in a disorder (one my LO saw who did give us the referral but clearly thought it would just be to put as ease by ruling ASD out was rather surprised to have it be dx'd). Sometimes it is the age of the child and the expectations for the age, so barely meeting expectations at a young age can still potentially fall more behind as expectations ramp up (up through age two especially has a very low bar for social development for example). Feel free to bounce ideas of this group. A great tool for me in getting my information together was to keep a notebook with running notes of concerns, behaviors, examples, etc, and as I read about ASD (in your case, you could read up on whatever disorder or disorders you are concerned about if you have an idea), it would trip things for me ("Oh, LO does that." or "That is like reading a description of my LO."), so I would put it in my notes. A I saw him exhibit behaviors, I would put it on the list while it was still fresh in my mind. It really helped to have all of those to reference at his appointment rather than trying to think of everything off the top of my head. A few things did get crossed off the list as he overcame things, but I just made note of when he overcame it rater than erase it completely. I continue to keep notes as it is helpful to see what areas need a bigger push at a given time, etc. Good luck!

[funchicken]

I would make the dev. Pedi appt since you'll probably have to wait to get in. Keep in mind that her peers are making developmental leaps, too. The bar is always moving.

[mcribster]

i agree with everyone. schedule it now because the waits are long and things may change again. GL!

[junebug060609]

Another vote to make the appt. You can always cancel, though I wouldn't...it sounds like something is going on, and a dev pedi should be able to help sort that out. It is wonderful to hear she's made some great strides. I have to agree with funchicken though, the bar is always moving. Every time it seems like we catch up a bit, the damn bar keeps moving. Damn bar.

[dashofreality]

Sorry didn't mean for this to be a post and run. Thank you all for the advice. I guess it better to let the professionals take a look at her. It is just amazing to me how different she is in just a few months. In November one of the girls in her preschool class yelled her name and gave her a hug. She just stood there panicked with her arms at her sides and said nothing. It was just one of the heart breaking moments. Today, however, at open gym she was introducing herself to other kids and asking their names! It took her 4 years to tell anyone her name, so this is just amazing to me.

cam since I can apparently strike selective mutism off the red flag list now, I would say her biggest flags now are social awkwardness and gross motor. She is not good at conversation, she often doesn't respond logically to questions or do well with the back and forth flow. She also repeats herself a lot. Since she started talking to other kids she will tell them her name or something about her brother 5-10x.

Gross motor she is just behind and awkward. Does have some sensory issues. Extremely sensitive to smell, but sound and tactile don't seem to bother her as much. Picky eater, will go hungry rather than try things, gags on certain textures. She internalizes everything. If she can't have something she wants right then she will say I don't want it and will refuse it in the future. She won't acknowledge pain. She can be bleeding and won't say anything. I also think she stims. To go to sleep she always opens/closes her mouth on her pillow repeatedly. Hard to describe, but I think that is considered a stim.

But she is advanced in some areas, is pretty good with eye contact, has no restricted interests, follows multi-step directions and her pedi thinks she is at the low-end of normal ranges but doesn't believe there is anything concerning.

I really do appreciate all the knowledge and help here!

[KC thepouchh8r]

Jan 23, 2015 16:00:01 GMT -5 dashofreality said:

Sorry didn't mean for this to be a post and run. Thank you all for the advice. I guess it better to let the professionals take a look at her. It is just amazing to me how different she is in just a few months. In November one of the girls in her preschool class yelled her name and gave her a hug. She just stood there panicked with her arms at her sides and said nothing. It was just one of the heart breaking moments. Today, however, at open gym she was introducing herself to other kids and asking their names! It took her 4 years to tell anyone her name, so this is just amazing to me.

cam since I can apparently strike selective mutism off the red flag list now, I would say her biggest flags now are social awkwardness and gross motor. She is not good at conversation, she often doesn't respond logically to questions or do well with the back and forth flow. She also repeats herself a lot. Since she started talking to other kids she will tell them her name or something about her brother 5-10x.

Gross motor she is just behind and awkward. Does have some sensory issues. Extremely sensitive to smell, but sound and tactile don't seem to bother her as much. Picky eater, will go hungry rather than try things, gags on certain textures. She internalizes everything. If she can't have something she wants right then she will say I don't want it and will refuse it in the future. She won't acknowledge pain. She can be bleeding and won't say anything. I also think she stims. To go to sleep she always opens/closes her mouth on her pillow repeatedly. Hard to describe, but I think that is considered a stim.

But she is advanced in some areas, is pretty good with eye contact, has no restricted interests, follows multi-step directions and her pedi thinks she is at the low-end of normal ranges but doesn't believe there is anything concerning.

I really do appreciate all the knowledge and help here!

I think that's enough to get a developmental pedis attention. My kiddo has an asd dx and is at age level or advanced outside of language and social delays, is excellent with eye contact, and follows instructions. She is good with scripts like asking names, saying her name/age, and other Social niceties but struggles with conversation speech. 

[megara4]

I agree, I'd make the appointment. I'm assuming you are thinking she may have ASD? Girls on the high functioning end of the spectrum do not present the same as boys (in my experience and in conversation with multiple friends who also have daughters on the spectrum) and it is really hard to get them diagnosed at an earlier age b/c they just don't fit the stereotypical ASD symptoms. It took us until my daughter was 8 to get a diagnosis. So, I would say just keep plugging on and being her advocate. I think that if anything these evals will track her progress, so that if someday she does get a diagnosis, they can look back and see how things have looked in the past, instead of you just trying to remember off the top of your head.

[cam]

Jan 23, 2015 16:00:01 GMT -5 dashofreality said:

Sorry didn't mean for this to be a post and run. Thank you all for the advice. I guess it better to let the professionals take a look at her. It is just amazing to me how different she is in just a few months. In November one of the girls in her preschool class yelled her name and gave her a hug. She just stood there panicked with her arms at her sides and said nothing. It was just one of the heart breaking moments. Today, however, at open gym she was introducing herself to other kids and asking their names! It took her 4 years to tell anyone her name, so this is just amazing to me.

cam since I can apparently strike selective mutism off the red flag list now, I would say her biggest flags now are social awkwardness and gross motor. She is not good at conversation, she often doesn't respond logically to questions or do well with the back and forth flow. She also repeats herself a lot. Since she started talking to other kids she will tell them her name or something about her brother 5-10x.

Gross motor she is just behind and awkward. Does have some sensory issues. Extremely sensitive to smell, but sound and tactile don't seem to bother her as much. Picky eater, will go hungry rather than try things, gags on certain textures. She internalizes everything. If she can't have something she wants right then she will say I don't want it and will refuse it in the future. She won't acknowledge pain. She can be bleeding and won't say anything. I also think she stims. To go to sleep she always opens/closes her mouth on her pillow repeatedly. Hard to describe, but I think that is considered a stim.

But she is advanced in some areas, is pretty good with eye contact, has no restricted interests, follows multi-step directions and her pedi thinks she is at the low-end of normal ranges but doesn't believe there is anything concerning.

I really do appreciate all the knowledge and help here!

It sounds like you have some very legitimate concerns. Many of us know the feelings of wondering if this next appointment will finally be the one to give you answers or if you will have to keep feeling like you are overreacting despite your gut saying you aren't. I spent years fighting for help when I knew how I felt wasn't typical. I was an adult (which I think can sometimes make things a bit more challenging to recognize) and had a less common presentation of symptoms, but I was eventually dx'd with ADD. So many wrong answers and so many "I don't know what is wrong." dead-ends later before I had some answers and an understanding of myself. With my LO, I was thankful to have at least a rough idea of what road to go down and pushed to get the access to that road (I didn't want to apply bandaids to his issues such as speech therapy and such when it would be better to provide those and other therapies in the context of the whole picture, well as clear as it can be at this time as of course comorbids can come to light over time). A specialist such as a developmental pedi sounds like a good fit for the types of concerns you have (full disclosure: this is based on everyone else raving about developmental pedis because we don't have any here - we actually don't even have regular pedis last I checked, just family practitioners - so both LO and I were dx'd by a neurologist with LO hopefully following up with a neuropsych for a more detailed tx plan if we can figure out insurance issues). And while you are hopefully able to get answers regarding your DD sooner than later, you shouldn't worry about thinking you are overreacting by looking into this too much (there will always be people who don't see the flags, don't get me wrong, but as long as there are issues, it is worth exploring). Good documentation and knowing your stuff at least a bit before an appointment can certainly help get there sooner.

As for being advanced in some areas, that is not uncommon at all. Eye contact isn't a R/O. Restricted interests can come later and auntie just posted a good article on gender differences in ASD 2 or 3 days ago I think it was. More than a few PCPs say things are R/Os when they aren't necessarily. Always follow your gut (I know I said that, but it truly can't be said enough). This group really helped me get to answers so much sooner between the collective knowledge and being pointed to so many great sources of information, plus been a huge help as we have been traveling on the post-dx path.

[dashofreality]

Thank you. I mean, it would be better if you all said, eh I don't think that is all that concerning, but we deal with the cards we are dealt. My referral should be in next week, so I have a feeling I will be around here more trying to glean some of your knowledge.