Deep routed fears/feelings on possible ASD - long

mightmom13 · February 2014

I know that I have been having more intense dreams lately, some more life stress, but it wasn't until I woke up from a weird nightmare involving a kid in DD's (she was in the form of a TV character) future high school classmate self-harming and then everyone learning that this nice quirky kid had ASD that I realized I am having some deeper anxiety/fears/issues about DD being different than her classmates and this being a longer journey than I thought. I think part of the dream was also related to recent twitter news feeds about celebrities, the self-harming part anyways.

DD's EI to pre-school transition meeting is coming up in a month, she will go for her evaluation days early summer, and her SLP brought up helping her prepare for 3 people in her life "disappearing" right as she turns 3 instantaneously. DD is becoming more rigid in routine and we have issues every day per me trying to ever so slightly mix it up, dropping her clarity in speech to where her SLP really can't understand her lately (longer phrases not being clear I think, the longer phrases are her non-rote ones narrating stories), more issues with social/emotional not being there or her not equating them to being "real," and just examples it seems like everyday that her behavior is not the norm - getting really upset this morning at daycare drop off because she did not have her "English muffin, apples, and oranges" snack I leave her with - her old teacher (more understanding) knew it wasn't about hunger and lead her the day's food menu so they could go look at it. Her norm teachers would just throw a puzzle at her and scoot me out the door. Her world has to be what it is, change is horrible for her, even my parents let do her thing and interfere with how her cousins play with her because they are scared of melt-downs and have only seen a third of her possible intensity.

Obviously I didn't want this for her, I am glad she is high functioning but the phrase "at least she is high functioning" is starting to make me mad with almost a non-existent adaptive score, and I just feel defeated as she ages and things become more apparent that this is a real possibility - I am thankful for all her therapists and that they have ASD experience so it has been more help to me and DD but.....we have enough on our plate, this was not supposed to be on our plate, she was supposed to "grow out of it" not into it if you will, and besides tip-toeing around things the family won't accept explanations. She has some wins - like her docs being surprised she didn't scream at the last appointment when getting on scale, but even that coming from them feels like a loss.

I am going to email a friend who is supportive, I tried our local support group but not for me, I know developmental PS could be great for her, but today - I don't want to deal with the 20 minute routine of getting out of the daycare building or DD bolting in front of a car like last week, or looking up the preschool online to be re-assured. Any suggestions on how to live life beyond this stuff? At her age of just over 2.5 years is it common to have reminders from her everyday that this is our life? Our family (beyond close friends) is just me and DD on this and though I am glad to not have a partner to fight with on this, it's hard - I think her using me more and more as a toy and her only constant and the true hugs and new rote "I love you to the moon and back" are getting at me too. I don't want her emotionally floating away. Thanks for listening/reading. Hoping this is just a rough patch for me, I know I will smile as soon as I see her in a few hours and pry myself into her day - but that literal awaking was kind of a shock.

mightmom13 · February 2014

And now after reading one of the newest intro's and responses I feel bad for posting this as I know we are lucky in many ways. A bite of a Snickers helped a bit as well.

lite-bright · February 2014

We didn't have a dx at 2.5, I was just beginning to realize something was up. At 6, my DD1 is a completely different child than she was then.

She has more strengths now. Her excellent memory is really helping her succeed academically, and that has given her confidence and is a positive way she is noticed by peers.

OTOH, the social stuff just gets more complicated, and while she is always learning, I sometimes wonder to what extent we are closing the gap or at least not falling further behind.

I think the psych who dx'd my DD with ASD did us a favor by emphasizing up-front that this is a lifelong condition. What I've learned from this board and nearly three years of dealing with the dx is that some needs will fade, others will come into being and need to be dealt with and maybe go away; some she is going to live with for a long time or perhaps all her life; and they are constantly going to be shifting in terms of intensity. I have hope that at some point way down the road, she may not meet the diagnostic criteria for autism; but I can't let that hope get in the way of the hard work that needs to be done. At the same time, whenever we hit a rough patch, I remind myself that even with ASD, development doesn't stop. It may be really slow, and hard to watch because other kids are doing things so easily, but eventually progress gets made. Time really does help with many things, and I found 2.5-3.5 to be a challenging age with both of my kids (ASD and NT).

All that said, it's hard. It is anxiety-provoking. And I think "high-functioning" is often reassuring bullshit. Yes, my kid has normal IQ, but she's not going to be able to have friends or hold a job if she is constantly annoying the people around her.

Nobody wants to be where we are. But we're here, so we just have to do the best we can. I can't think about the future too much, because I wonder and worry about all the unknowns -- like your dream. My only advice is to put your energy into the present, and not just your DD -- put some energy into stress relief for yourself, too. Exercise, diet, yoga -- find a caretaker or two that wil allow you to have some space for yourself. I went on a/ds about six months after dx and was on them for some time before my anxiety was at a manageable level.

mightmom13 · February 2014

lite-bright said:

I think the psych who dx'd my DD with ASD did us a favor by emphasizing up-front that this is a lifelong condition. What I've learned from this board and nearly three years of dealing with the dx is that some needs will fade, others will come into being and need to be dealt with and maybe go away; some she is going to live with for a long time or perhaps all her life; and they are constantly going to be shifting in terms of intensity. I have hope that at some point way down the road, she may not meet the diagnostic criteria for autism; but I can't let that hope get in the way of the hard work that needs to be done. At the same time, whenever we hit a rough patch, I remind myself that even with ASD, development doesn't stop. It may be really slow, and hard to watch because other kids are doing things so easily, but eventually progress gets made. Time really does help with many things, and I found 2.5-3.5 to be a challenging age with both of my kids (ASD and NT).

All that said, it's hard. It is anxiety-provoking. And I think "high-functioning" is often reassuring bullshit. Yes, my kid has normal IQ, but she's not going to be able to have friends or hold a job if she is constantly annoying the people around her.

Nobody wants to be where we are. But we're here, so we just have to do the best we can. I can't think about the future too much, because I wonder and worry about all the unknowns -- like your dream.

Thank you for responding - kind of the kick in the pants if you will that I need, put in the nicest way possible. I don't want to feel anxious about things, which is why the whole sub-conscious dreams thing is throwing me off, because I keep saying "I'm fine."

I need/needed to hear that sentence in bold, I know I am dealing with genetics and what not and we keep following up, but no one professionally has said that sentence. Sometimes I just need to hear something straight up from someone to have it sink, deal, and get on with life whatever the stakes may be. When DD had her first referral to developmental peds per failed M-CHAT, pedi observation, and quick closing of the M-CHAT follow-up binder my counselor at the time asked/told me straight up: "Has anyone told you yet that autism is not caused by how you parent" while looking me straight in the eye - it felt life-changing. I knew logically I didn't but until someone said the exact words I needed to hear I didn't believe it.

So I think I just need to hear it from some pros in the field as well - no more tip toeing or suggesting about possible ASD or delays or genetic conditions, because if any of DD's stuff is mito-based I know first hand it is life long. Period. OT is coming around to that and I think she will be that help to say, "you know this is a long road, right?"

And I feel the same way about the high functioning statement as well - in the beginning I was proud of it in a way- now I see (like the OT) great she can count to 30, how is the whole getting any clothing off independently thing going part of it.

Again, thanks.

Unknown · February 2014

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typeset · February 2014

McRib said:

I don't agree that this is a lifelong conditon.

I'm holding my breath for the peer-reviewed study saying X treatment reverses genetic mutations.

@mightmom13, my son is considered "very high functioning" by his dev pedi and no clinician has ever called him "mild." He's getting more aggressive right now when his routines and fixations are interrupted. I provoked a meltdown last night by brushing his teeth before putting on his pajamas--which guarantees tonight we'll be mixing it up even more. It's like riding waves. The preschool transition is difficult, for kiddo and mom. lite-bright is spot on. I'm rereading her words and applying them to our situation, too.

Unknown · February 2014

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d.f · February 2014

I agree that ASD is a life long condition and doctors don't really do any favors when they emphasize that a small percentage of people lose the Dx. Although my DS's diagnosing psych did emphasize that even if he were to lose the Dx it would just mean he no longer meets the criteria. That he would likely still have many traits of ASD.

I'm optimistic that my DS may (or may not) lose his Dx at some point. I don't know what the future holds. I am confident, however, that his neurology isn't going to magically become typical.

Unknown · February 2014

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lite-bright · February 2014

Ha, auntie! I was paraphrasing Coplan's "development doesn't stop" above. Part of the reason I loved his book so much was that it was realistic but maintained some optimism. Unlike most books introducing parents to ASD that I was reading at the time.

coffee bean · February 2014

I'm sorry you are going through this, especially alone. Are there any parent support groups that you could join? Sometimes it helps most to just realize you aren't alone. My daughter's pre-school would have monthly coffee sessions that were nice - at least 2 or 3 of us would end up in tears by the end of session.

There is also a group called https://www.tacanow.org/ that I think has national chapters.

The transition into preschool was hard, I remember. My daughter is also VERY structured and regimented. For months and MONTHS, she would have to fall asleep holding a toy ice cream cone in each hand. Now, she insists on having exactly 4 townhouse crackers next to her in bed every night (she rarely eats them, just wants them there).

I made the decision to let my mom keep watching my daughter (I have twins, one is ASD, the other was language delayed but has caught up) so that her days weren't ALL structure and they had some goof-off grandparent time. In hindsight (20/20, you know), I wish I had put them in a day care for the times they weren't in the pre-school (it was only 2.5 hours per day). She NEEDS the structure to function well and it would have been better for her.

I agree the whole high functioning thing kind of stinks too. Abby has enough academic skills to keep up academically in kindergarten (her current grade), no problem. However, her behavior, sensory issues and social issues result in some "she's the weird kid" looks from her class and situations where her ID twin sister gets invited to a party and she does not. Talk about heartbreaking.

In some ways, you just want to quarantine them off to only kids just like them, but I know that's not what she will need to succeed longer-term in life.

None of this is easy. Talking it out makes you feel like you aren't alone. Hugs.

coffee bean · February 2014

lite-bright said:

We didn't have a dx at 2.5, I was just beginning to realize something was up. At 6, my DD1 is a completely different child than she was then.

She has more strengths now. Her excellent memory is really helping her succeed academically, and that has given her confidence and is a positive way she is noticed by peers.

OTOH, the social stuff just gets more complicated, and while she is always learning, I sometimes wonder to what extent we are closing the gap or at least not falling further behind.

I think the psych who dx'd my DD with ASD did us a favor by emphasizing up-front that this is a lifelong condition. What I've learned from this board and nearly three years of dealing with the dx is that some needs will fade, others will come into being and need to be dealt with and maybe go away; some she is going to live with for a long time or perhaps all her life; and they are constantly going to be shifting in terms of intensity. I have hope that at some point way down the road, she may not meet the diagnostic criteria for autism; but I can't let that hope get in the way of the hard work that needs to be done. At the same time, whenever we hit a rough patch, I remind myself that even with ASD, development doesn't stop. It may be really slow, and hard to watch because other kids are doing things so easily, but eventually progress gets made. Time really does help with many things, and I found 2.5-3.5 to be a challenging age with both of my kids (ASD and NT).

All that said, it's hard. It is anxiety-provoking. And I think "high-functioning" is often reassuring bullshit. Yes, my kid has normal IQ, but she's not going to be able to have friends or hold a job if she is constantly annoying the people around her.

Nobody wants to be where we are. But we're here, so we just have to do the best we can. I can't think about the future too much, because I wonder and worry about all the unknowns -- like your dream. My only advice is to put your energy into the present, and not just your DD -- put some energy into stress relief for yourself, too. Exercise, diet, yoga -- find a caretaker or two that wil allow you to have some space for yourself. I went on a/ds about six months after dx and was on them for some time before my anxiety was at a manageable level.

Really good thoughts and advice.

coffee bean · February 2014

-auntie- said:

High functioning is a double edged sword.

It only means IQ- it does not take the degree of impairment or atypicality into account. Having an average or better IQ means trying to find a place in a mainstream world where the fit will never be intuitive or easy. During the school years, IDEA can help level the playing field somewhat, but it gets harder as kids become adults and fewer accommodations are made.

It's funny, I wrote a piece on a local BSA Klondike event over the weekend. One of the sled teams was made up of young adults from a local residential school for those with DD. Many of the scouts have ASD with ID- they were wrangled, supported, encouraged and coached to the nth degree and having a blast. There was a boy with HFA in DS's old troop who was really struggling- he's a bright kid, but very impaired and atypical. He was expected to behave in a manner consistent with what his same aged peers were and he was paying the price because he couldn't quite hit the bar.

According to DS's psychologist who has worked with kids and adults who have HFA/Aspergers and PDD-Nos for years, it's the ability to be flexible that- when all things are equal- translates into the best out come.

I don't know what some of these things are. What is IDEA and ID?

typeset · February 2014

coffee bean said:
I don't know what some of these things are. What is IDEA and ID?

IDEA = Individuals with Disabilities Education Act

ID = intellectual disability

coffee bean · February 2014

thanks, @typset

kcisthebombdotcom · February 2014

McRib said:
I don't agree that this is a lifelong conditon. Call me overly optomisitc. I'm good with that. My son was diagnosed at 2.5 last January and he would now be considered off the spectrum or reall-freaking-close most days. His ATEC was "high functioning" at 60 and today it is in the "No autism" category. When my son was diagnosed last year there was a study out of UCONN about kids growing out of the label- it got me googling. Kid's do loose the label sometimes even if you do nothing. From that googling I found all sorts of info and found biomedical treatment. It works for many and I thank God every day we found it.
I would encourage you to seek out other parents and think outside the box. Mito disease and mito dysfunction are different. various conditions can cause mito dysfunction (for us we have lyme disease induced autism wich causes mito dysfunction in addition to many other issues). Mito cocktail can help with this or just treatment of the underlying medical causes.

I do believe in biomedical treatments but i wouldn't go as far to say autism isn't lifelong or curable. i think if a diet or treatment "cured" the symptoms the child was misdiagnosed and they really had celiac or Lyme or some other disorder which caused autistic symptoms. i also think the push to diagnose in toddlerhood is great because early intervention seems to make a difference but its probably easy to misdiagnose so young. autism seems to be a disorder of genetic origin and i don't think biomedical stuff fixes the genes. however i do believe certain supplements or dietary changes for a child with an actual intolerance make the brain run more optimally making therapies that much more effective.

Unknown · February 2014

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Unknown · February 2014

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Unknown · February 2014

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mightmom13 · February 2014

coffee bean said:

I'm sorry you are going through this, especially alone. Are there any parent support groups that you could join? Sometimes it helps most to just realize you aren't alone. My daughter's pre-school would have monthly coffee sessions that were nice - at least 2 or 3 of us would end up in tears by the end of session. There is also a group called https://www.tacanow.org/ that I think has national chapters.

The transition into preschool was hard, I remember. My daughter is also VERY structured and regimented. For months and MONTHS, she would have to fall asleep holding a toy ice cream cone in each hand. Now, she insists on having exactly 4 townhouse crackers next to her in bed every night (she rarely eats them, just wants them there).

None of this is easy. Talking it out makes you feel like you aren't alone. Hugs.

Thanks - the local Autism support group wasn't my style, plus it was hard to lie to my folks (non accepting of anything) to get a sitter. Luckily DD's therapists all work at the same place up the road that offer not only play groups but educational sessions that are free with free child care from therapists or student interns. Some coming up soon that I hope to find some folks through maybe even a sitter via student intern or something.

Bedtime and getting up is the worst - she has to have the same books, same order, now lines them up, also now aligns cookies and milk up, and flips if I try to shake things up even a little. She is also a bolter - almost got hit by a car last week in the daycare parking lot and has bolted out of a store. It's tough because I totally get that if it doesn't interfere with learning/classroom kids don't get services, but I worry she will mask needs initially via already knowing all her letters, shapes, colors, and can count up to 30 - but can't get into any pre-school per potty training. She can't sit still in a chair at home and current daycare is safe and known, but they just let her do whatever - interesting to see when she moves up in rooms here in a few weeks.

mightmom13 · February 2014

McRib said:

I d
I would encourage you to seek out other parents and think outside the box. Mito disease and mito dysfunction are different. various conditions can cause mito dysfunction (for us we have lyme disease induced autism wich causes mito dysfunction in addition to many other issues). Mito cocktail can help with this or just treatment of the underlying medical causes.

She is already on carnatine. For my mito I do carnatine, B2 and may add in CO-Q 10 back in soon. For what we are looking at it is mito disease (in the actual mDNA or nDNA) causing other symptoms/disease processes.

mightmom13 · February 2014

McRib said:

coffee bean said:

thanks, @typset

KC_13 said:

I do think there is an underlying medical reason for much autism and they are only at the tip of the iceberg in sorting out the epelipsy kids from the gut kids from the mito kids. I also think Lyme induced Autism is part of this growing epedemic of PANDAS and autism.
Curable- well the word cure can be debated and can offend. Yet I'm glad my son is cured of the GI pain and malabsorption that were part and parcel to most of his sensory processing issues and language delay
Can genes be cured and mito be cured? I think if MTHFR is at the heart of your problem, which it has been for many, then that can be helped to function optimally. So I think we kind of agree

It is interesting the things coming up in the mito/mito AND autism research - a friend recently posted this article on FB - I am not saying ANYTHING here about vaccines or anything - just the mito link to autism:

https://www.huffingtonpost.com/david-kirby/new-study---mitochondrial_b_147030.html

Both DD and I presented with regression in gross motor around the same age following an illness, that is what I find interesting - she just happened to present with other symptoms around the same time including her "autism symptoms" as was first noted in her chart. And again, not starting a vaccine thing here - just thought some of the other science was interesting. I still have mito "flare ups" here and there as well - sucks but I deal.

Unknown · February 2014

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mightmom13 · February 2014

-auntie- said:

McRib said: Our autism symptoms came after the 15-18 month shots. I have a theroy for us that he already had congenital lyme and the vaccines put his immune system into overdrive. regardless due to mito our immunologist advises we halt the vax schedule on both children.

Do you have concerns about the diseases the vaccines are meant to prevent triggering regression? Back in the olden days, when lots of kids were getting things like measles there were kids who would have autistic behaviors/regression in the wake of having the disease. I know a few older moms who say this is what happened with their now middle aged children.

That is interesting, the behaviors/regression in the wake of the disease process or the onset of disease. I WISH my folks would open up their personal records (even pics, I have only seen a video of my walking regression which is almost identical to DD's walking regression I saw) to know what I was facing/when/what they saw/how I acted since my first memory is of my CT scan at 18 months-ish.

@McRib - Dealing with food allergies/sensitives with DD along with other systemic reactions - I do know that there is what they call a "bucket effect" with the body and maybe some of the concern with what you are talking about is just that in the overall of the body. It has so much going on already that you just add a few things in before the body has a chance to purge of the other stuff and the bucket just overflows. I do know of some moms who choose to space and/or separate some of the vaccines around that age as too not overload the body.

Unknown · February 2014

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Unknown · February 2014

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