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Old 06-19-2013, 10:58 AM - Thread Starter
 
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Hi all, New around here & I have to say that of all the Mommy websites, this is the one I find most helpful and peaceful. (I've shopped around and find others more anxiety-inducing). I am a 34 yo FTM of a 14 month old DD, who I am fairly certain will be diagnosed on the spectrum someday. She is a wonderful little thing, very smiley, sweet, smart, and LOVES her Momma. Wouldn't trade her for the world. She is already in ST through our state EI program for expressive language delay (has no words and initiates very little communication). Is making some slow, steady progress. SO, my questions to you VERY wise women: 1. For those of you who suspected you child was on the spectrum, how did you deal with general anxiety/worry of the in-limbo stage that I'm in? 2. How do/did you deal with well-meaning family members who tell you "that she's fine" and that she will grow out of some of her issues? (including my husband, his parents, my parents, etc). I guess I'm having issues staying present and parenting her for who she is...many times I'm filled with "what-ifs" which are almost always worse than reality could/would be. In addition, we'd love another baby, but I have fears that adding to our family would somehow take away resources from her (and would in effect, be detrimental for her) and/or the fear of having another LO on the spectrum....thanks in advance!!

Sierra, wife to DH , Mama to DD (2012) and DS(2014). In love with my family and hoping for inner .
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Old 06-19-2013, 02:46 PM
 
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HI sierramtngirl, welcome :)

 

When our DS was a little over a year I was EXACTLY where you are, right down to the conviction that DS was on the spectrum, wondering about having a second child, etc.

 

I will say that the limbo stage for us lasted until DS was almost 3 and it was very, very difficult for me.  I did not deal with it emotionally very well and, looking back, I realize that my worry and fear made everything worse.  My advice would be to seek support, local, loving support from other parents who have been there done that.  Even in small communities there are usually ASD or special needs support groups and finding people who understand the emotional turmoil of that stage can be a life saver.

 

For us, when our DS started in an EI preschool, the school turned out to be terrible for him (long story) but for me it was a life saver because every morning I spent some time with other moms going through the exact same fear and uncertainty. 

 

Part of it for me was acknowledging my true feelings.  I wanted to scream and cry and mourn for the child I thought we would have.  But I didn't let myself and I think not giving myself permission to feel sad and angry just extended that emotional stage.  When I finally processed all of those feelings is when I was finally able to move beyond them genuinely rather than painting a fake smile on my face and soldiering on. 

 

My other advice is to seek professional help from highly qualified people who treat you and your little one with gentle respect.  I spent too much time listening to callous professionals (a terrible speech therapist, a very young and inexperienced teacher, etc).  The right people can also help you make sure you know what is going on with your little one. 

 

To be honest, 14 months old is VERY young and there can be so many things that might cause a little one to look like they might be on the spectrum.  I wouldn't accept any kind of diagnosis for at least a year or two.  When he was young, our DS had some "reg flags" for ASD and most people we dealt with assumed ASD but we found out later that he has a severe language delay instead. 

 

To be perfectly honest, that you are here asking for support and advice tells me that you will be fine through whatever happens next :)

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Old 06-19-2013, 03:45 PM - Thread Starter
 
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Thank you fizgig for your supportive reply. It's so nice to hear from someone who truly understands. Our current ST is an older therapist (actually has retired from 30+ years in clinical practice, now does EI only as her part-time gig) who feels that DD is fine and that she only has language delay. I have been cautiously hearing what she says as I want to keep an open mind (as something just feels "off" with DD). The basic message I get from our ST is that DD is young, babies don't get a lot from frequent therapy (she visits 2x monthly) and that DD will be "fine". We are doing a lot of sign language and waiting for DD to initiate communication. I feel that the ST cares about DD, I just don't think she's really taking my concerns seriously. And again, to the ST's credit, she's seen A LOT more kids gain language over her years of experience (certainly more than me!!). But, I have considered getting a second opinion from a private ST just to ease my mind....after hearing from you, I think I will. Additionally, I have tried to be open with my concerns with DH. He does well "handling" me and is a great listener. His feeling is that we need to parent the child we've been given (and I agree!) but also feels that DD is just fine. I suspect that if she is one day dx with SOMETHING, he will go through what I'm processing now. I'm going to look for a local group that can at least share my experience. (Our entire family lives VERY far away and none of our close friends have children- not kidding-we live in a ski-bum town of 30 and 40 somethings that are more into skiing, surfing, mountain biking and the like). I am going to allow myself to have a boo hoo every now and then (as this is something I've been suppressing-"painting on the happy face" as you've said). Hearing that your limbo stage lasted until age 3 makes me feel that I've got to do that now. On another note, did you go on to have another baby? As I previously mentioned, we would like to have another baby (which is on hold not only because of my concerns, but also because DD is a nursing machine and I'm not yet cycling due to her 'round the clock nursing schedule). If not, is this something you would consider now that you are through the worst of the worry? I'm getting old(er) and I can hear the clock's tick tick.

Sierra, wife to DH , Mama to DD (2012) and DS(2014). In love with my family and hoping for inner .
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Old 06-19-2013, 03:50 PM - Thread Starter
 
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And also, how's your DS doing now? Sorry to make it all about me!!

Sierra, wife to DH , Mama to DD (2012) and DS(2014). In love with my family and hoping for inner .
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Old 06-19-2013, 06:29 PM
 
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Ha, you should let things be all about you sometimes :)

 

Let's see - no we didn't end up having another child.  I've heard enough positive stories about siblings of kids with special needs that I am convinced it can actually make things better. But for us we both agreed that we are actually happy being one and done.  

 

Our DS is doing great now!  He is still very behind language-wise, but in every other way he is on track.  The developmental ped we see believes he will mostly catch up in the next 3 - 5 years.   He will always probably have auditory processing difficulties and might have some pronunciation issues, but he should be able to attend typical schools, etc.  He is a  happy, silly, active little guy :)

 

My DH did go through the emotions of all this well after I did, mostly because he wasn't doing the day to day work of it all.

 

Can I ask what makes you feel so sure that your DD is on the spectrum?  Does she use gesture at all?  How is her eye contact?  How does she communicate her needs/wants?  Even if she initiates no communication at all, that does not inherently mean ASD.  Of course it could mean ASD as well.  Most experts I have dealt with (including our dev ped, ST, and a language disorder expert we consult with) have all said it is basically impossible to diagnose a child before they are 2.5 - 3 unless they are fairly severe.  So, honestly, I know you feel something is "off" and I would totally trust that, BUT I would also not jump to any conclusions.  What I mean to say is, a second opinion at this moment in time might not really tell you anything if you are just looking for a diagnosis.  At this point (and in general really) my advice would be to see what seems to help your DD, pay attention to her strengths and weaknesses, and go from there.  I say this because, especially at that age, ASD or not, the only real thing you can do is some therapy.  When she is closer to 2 or 3 then different kinds of intervention might make sense.  But especially if it isn't clear what's up with her, I would get a little therapy, then surround her with lots of fun and love. 

 

There are some great books out there to encourage communication if you want specific things to work on with her at home.  "Play to Talk" (MacDonald) and "It Takes Two to Talk" are both great books that have concrete games and things you can play with you little one.  They helped me a lot through this stage.

 

If you do think about more interventions, I would mostly just make sure you keep things child-led and play based and you can't really go wrong :) 

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Old 06-19-2013, 07:30 PM
 
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Originally Posted by sierramtngirl View Post
1. For those of you who suspected you child was on the spectrum, how did you deal with general anxiety/worry of the in-limbo stage that I'm in?
2. How do/did you deal with well-meaning family members who tell you "that she's fine" and that she will grow out of some of her issues? (including my husband, his parents, my parents, etc).
I guess I'm having issues staying present and parenting her for who she is...many times I'm filled with "what-ifs" which are almost always worse than reality could/would be. In addition, we'd love another baby, but I have fears that adding to our family would somehow take away resources from her (and would in effect, be detrimental for her) and/or the fear of having another LO on the spectrum....thanks in advance!!

 

1. Yoga.

 

2. I didn't talk to them about it. I did, however, talk to specialists about it and eventually a therapist about it.

 

3. When you catch yourself not being present, bring yourself back to the present. Don't beat yourself up for it (that still isn't being present), just focus on your breath, what you can see right now, this moment. etc. And then when you realize you aren't being present any more, just do it again! namaste.gif

 

For me, a big part of this path has been making peace with the not knowing. The not knowing never really leaves. Someday, you may have a nice clear diagnosis for your child, and it still won't tell you anything really important, like what she'll be capable of an adult or which school really will work best for her or any of that. This is a path of not knowing, and nearly every answer brings more questions. For a long time.

 

I like to KNOW things. I like to research and make sense of things and make plans, and this has been really tough for me. I find it easier when she is doing well and is overall happy. I'd like to say I have a sense of peace about it all the time, but that isn't quite true.

 

We had our children very close together, before we realized that our first child was on the spectrum. I'm thankful that it wasn't a decision I had to make. But my younger daughter is such a blessing both to me and to her big sister. She is one of the best things we ever could have done for our spectrumy kiddo -- she has given her a look into what peers are doing and how they interact, and it something that our older DD couldn't have gotten any other way. At times, I found it overwhelming to be mothering them both, but it has only been a good thing for our DD on the spectrum, (who, BTW, just finished her first semester at community college!)
 


but everything has pros and cons  shrug.gif

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Old 06-20-2013, 08:46 AM
 
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DS1 was dxed shortly after he turned 3. I knew for years that something was off, he started EI at 18 months of age for delayed speech. It was extremely difficult to get him diagnosed even as early as I did. We traveled 800+ miles x3 to a leading Children's Hospital and spent countless hours and money pushing for evaluations/services. Now that he is 4, getting a dx would be even easier because his ASD is much more obvious. 

 

 

I did have another child after DS1 but it was completely unplanned and frankly, knowing what I know now, I would not make that decision again. We have interesting circumstances though. We have two older girls, DS1 was already the third child. The two boys are barely two years apart and with DS1's developmental delays, they function like they are barely one year apart. The baby has already surpassed DS1 in many things. We have severe aggression issues with the two boys to the point where all of DS1's therapists are terrified for DS2's safety so I am left shipping one boy off each day somewhere or having to hire help to keep them apart. It is truly that bad and has been this way for two years now. A wider spacing probably would of been an entirely different story. 


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Old 06-20-2013, 11:37 AM - Thread Starter
 
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Wow ladies, thank you so much for your thoughtful replies. It really means a lot to me that you all would take your time to respond. To fizgig: My main concerns (95% language worries, 5% gestural communication worries) do relate mostly to expressive language (which according to a friend of mine who works with dx ASD kids-verbal stuff is THE red flag with little girls most often). She has never been a very verbal baby. Did not babble until 8 months, not much (very minimal) back and forth babbling OR cooing. No words yet, not even momma or dada, no jargoning (but does babble more now and is making more back and forth verbalization-makes a noise that sounds like "yah" and does do the "mmm" sound for when she signs more and momma's milk). She does independently initiate signs for "all done, more and momma's milk" to communicate those things (this has been in the past month, prior to that, we had NO inkling what she wanted as it was just crying!). Knows about 10 other signs, but will not use them independently, only if we say the word first (such as thank you, please or book). Has always gestured to be picked up. Has very good eye contact and excellent receptive language, & we feel like she's smart as a whip. Understands loads-close the door, helps me feed the cats, flush the toilet, pet the dog, bring me the ____. Follows commands very well and is generally a compliant baby (I joke that if she listens this well at 14, we'll be all set!). Clapped at 9 months, waved bye bye at 11 months. So those things are all pretty well intact. Smiled on time, and has generally hit all other milestones on time. Her joint attention is ok, does point to show me something she wants, but rarely to "share" something with me. Looks where we are looking or pointing most of the time. Points to stuff in books but I really feel like she's just copying what we are doing. I know reading this, you're gonna say, that I'm nuts....but again I just feel that she is "off", especially being around my sister's kids (both of hers were pointing & showing like mad, had lots of facial expressions at this age, 3-5 words). I know kids are different, and I'm certainly willing to give her the time she needs, as you've said, she's only 14 months. The purpose of another ST's opinion is just to make sure we are doing what we need to do. I am certainly going to pick up "it takes two" (an ST friend of mine from college recommended this just the other day). I really don't care that much about a dx so much as making sure she gets what she needs.

Sierra, wife to DH , Mama to DD (2012) and DS(2014). In love with my family and hoping for inner .
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Old 06-20-2013, 11:57 AM - Thread Starter
 
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To Peony: Thanks for sharing your point of view. We've always wanted more than one kiddo, and I think we will probably move in that direction once my body decides to cooperate. Right now, I'm struggling with cutting back on nursing as she still nurses like a 9 month old VS just continuing to nurse since it's obviously something she needs. (But I would like to cut back so that I can get pregnant-at least consider another pregnancy!). TO Linda on the move: Thank you for sharing your experiences as well. So many of the things that you've said I totally get. You're right, we never know (about anything, really). This is a concept that I accepted before I had a child (haha-it really does change everything). I am a very knowledge-based person and like to know what I'm dealing with (which is what I think got me started down this worrying path to begin with). I think that the inherent nature of child-rearing and the unknown is a challenge for many people; I know it certainly has been for me. I never would have described myself as a worrier, but I'm a card-carrying member of that club now!! It's funny that you mentioned yoga; last Friday I bought a pass at a local studio and booked a babysitter each Friday evening to ensure that I have a space and a time reserved to get back into practicing yoga. In the past, I've cultivated a regular practice with meditation and found that this just made me a better person AND it's helped me be much more present. (which is probably what I've been struggling with the most-not looking at this beautiful girl in front of me, but worrying about "What ifs"). I'm hoping that a regular yoga practice will help pull me into the present a little more. Thank you again to all of you lovely ladies. What a blessing you are!! And sorry the post is a jumbled mess.....my original post had paragraphs and spaces. I don't know what's up with that!!

Sierra, wife to DH , Mama to DD (2012) and DS(2014). In love with my family and hoping for inner .
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Old 03-13-2014, 10:07 AM - Thread Starter
 
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Hi Ladies,

A big thank you to all of you who responded to my post last summer.  I wanted to give a brief update of my DD since we are nearing her 2nd birthday (can't believe that!) &  because I know that someone may search and find this thread and wonder what happened to us.   DD continues to make wonderful progress everyday and I feel so blessed in so many ways (one of the biggest blessings is MDC for giving me the confidence to know that she is "OK"-even when everything is  not ok, and there is nothing wrong with being different!!).  She's still such a wonderful little thing, now so full of words--if I had to guess, I'd say we are in the 500-word vocabulary range.  She started really taking off with her expressive language around 15-17 months at by 18 months had over 100 words.  She is now combining words in sentences 3-6 words long.  She can certainly expresses her wants and needs and is now starting to initiate little conversations (this morning:  "MMMMM waffles.  Waffles good, strawberries so good!" All the while looking at me and smiling).  Due to this big jump in her language, she "graduated" from our EI program a few months ago, although I do still have phone access to our ST out of the goodness of her heart.  DD is bright and is able to really pick up on a lot of things going on around her which I think will serve her well as she does continue to lag behind her peers a little in social skills (although who knows, from what I've seen, all 2 year olds are pretty weird and socially awkward).  She is very social to those that are close to her, family and close neighbors but maybe has a little social anxiety (which she totally got honestly from her mamma-I would describe myself as an extrovert, but definitely anxious in big social situations) around larger groups and it takes her some time to warm up. We have been exposing her to smaller groups at storytime and at a weekly swimming class.  She has started to sing along with the classes and knows the names of the kiddos she attends the classes with. She does continue to have some "pink" flags for ASD, but I'm not really focusing on that right now, just trying to build upon her strengths and really work on her weaknesses.  She does appear to be a pretty "spirited" little girl, and good for her-which is difficult to remember when she is in the middle of a huge meltdown.  But, it has helped me to identify areas of weakness that we need to work on together.  I know it's not going to be all sunshine and puppies and rainbows, but I'm feeling so much better about her future and I really feel in my gut that she will be ok - no matter what the outcome is.  I'm also 29 weeks pg for baby #2, so I'm hoping that I'm able to enjoy the baby journey a little more next time instead of being so worried like I was last time around.  Thank you all again so much for the support!


Sierra, wife to DH , Mama to DD (2012) and DS(2014). In love with my family and hoping for inner .
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