Intense Nearly 2 Year Old - Help Me Troubleshoot, Please! - Page 2

[pickle18]

Originally Posted by baltmom 

I often feel conflicted about labels too, but I've also found that as I've pursued support for my son, the labels really don't come into play very much. (This may change - he's only 3.) But when we visit our OT, we don't talk about SPD, we talk about helping him feel more confident using his body and switching activities. When we visit his developmental ped, we don't talk about any particular dx, we talk about how well he's functioning at daycare, home, etc and any additional support he may need.

One more book you may find helpful, often recommended on here by Lindaonthemove, is http://www.amazon.com/Quirky-Kids-Understanding-Helping-Doesnt/dp/0345451430. It addresses much of what you've mentioned - your uncertainty, questioning yourself, family members with different perspectives, the potential lines between typical and not-typical quirkiness. Very supportive.

Thank you so much!  I really appreciate the link, and I really like this approach.  It feels organic (and yes, transitions around here are incredibly difficult). And that is really the root of it - he's struggling, even if I'm the only one who feels how much, and I need more tools to help him.  I will look into that book.

And you're right, IdentityCrisisMama - I think I will post there soon.  Just reading old threads in there has already been helpful.

[Linda on the move]

Originally Posted by pickle18 
 

I've acquired a great many labels in my lifetime that have been useful to me, in terms of seeking appropriate help.  But I'm also sensitive to the ramifications they can have for a child's identity and development, as well as how he is perceived within a school system or other community, etc.  This is also likely colored by seeing up close the polar opposite of what you are suggesting - a zealous approach to apply labels to a child that don't exactly fit, that are used to "explain away" behaviors that merit a closer look, and which have generally caused more harm than good to his identity. All of these things lead me to being cautious, and making sure the shoe fits - if it does, then the benefits may absolutely outweigh the risks, and I do believe parenting counts in terms of how the child processes the label.

There's really no way to know if the shoe fits or not without bringing in experts. The only alternative is to attempt to diagnosis your own child based on what you read on the internet. A lot of parents do that, but I really don't recommend it.

Baltmon did a great job explaining how labels have worked out for her child. My real point is that it isn't wise to let fear of a label stop you from getting the best information and help for your child that is available. The goal is to be better able to understand your child so you can better meet his needs. For us, the other information that came out of the evaluations have been more helpful than the labels.

I also feel there is no risk with a diagnosis of sensory issues for a young child because no body ever has to know that diagnosis unless you tell them. As far as schools go, in most states, a dx of SPD does not qualify the child for any accommodations under a 504 plan unless it is co-morbid with another condition -- such as autism. So, there's no reason to tell the school unless you want to tell a specific teacher to help them understand your child better.

I've helped my DD make peace with some VERY heavy labels, far bigger than the little things you and the other posters are talking about. She is comfortable with who she is, but understanding that she is on the autism spectrum has been an important part of making peace with herself. If a child is bright, they will figure out they are different. Being open and honest and getting them appropriate support (including in my DD's case, a talk therapist to discuss how she felt about her diagnosis) is part of accepting the whole package of who they are.

If you can really keep it a secret their whole childhood without them labeling themselves as stupid, weird, lazy, etc., there really must not be anything very significant going on. The topic of how to help a child make peace with being atypical in some way is a big one, but really truly deeply NOT a reason to refuse to get a small scared child real help.

[pickle18]

Originally Posted by Linda on the move 

I've helped my DD make peace with some VERY heavy labels, far bigger than the little things you and the other posters are talking about. She is comfortable with who she is, but understanding that she is on the autism spectrum has been an important part of making peace with herself. If a child is bright, they will figure out they are different. Being open and honest and getting them appropriate support (including in my DD's case, a talk therapist to discuss how she felt about her diagnosis) is part of accepting the whole package of who they are.

If you can really keep it a secret their whole childhood without them labeling themselves as stupid, weird, lazy, etc., there really must not be anything very significant going on. The topic of how to help a child make peace with being atypical in some way is a big one, but really truly deeply NOT a reason to refuse to get a small scared child real help.

Thank you so much, Linda!  Your responses are right on target, and have been truly helpful to me.  First of all, I have to say I'm so impressed with the many ways you are helping your daughter and meeting her needs, on multiple levels.  I certainly don't mean to blow this issue out of proportion - and you've opened my eyes more to how my own experience may be coloring how I've approached this.

The more I read, the more comfortable I am in pursuing this, and the more confidence I'm building in my assessment of the situation. It's also been helpful to find other parents discussing my same feelings of uncertainty, second guessing, and perhaps a little denial born of simply being adjusted to DS and trying to constantly accommodate him.  But at the end of the day, if I can get over myself, what matters most is a little boy who wants to go to the playground but can't because he can't get dressed.  For whom the mere prospect launches him into wounded, frightened epic tantrums that scare me, too.  In spite of our best attempts and workarounds, it's seriously impacting his life, and he deserves better.  Sleep is incredibly difficult, and transitions, in spite of our efforts, are so hard.

I think you also hit the nail on the head about this being why discipline techniques just don't work.  I'm looking into our eval options, which so far appear expensive (hopefully not prohibitively).  He's young, but I'm not sure an EI eval would be any help at all, or even applicable, given that he has no other delays.  I'm just trying to figure out the logistics and how to pay for it (it doesn't appear insurance will help...).  In the meantime, I'm reading what I can get my hands on from the library (Quirky Kids, Sensational Kids, and Out-of-Sync Child Has Fun) to see what I can learn/apply.  I'd prefer not to play OT alone, though.  Ideally, we'd at minimum have an eval and some kind of plan, if this does indeed fit as well as it seems to at the moment.

[IdentityCrisisMama]

Pickle, 

A couple of suggestions from someone who also grappled with some of the financial concerns...

• Call your local universities and ask if their OT or whatever department that educates the service providers you need has some sort of training program that includes clients from the community.  They are sometimes offered at a discounted rate and would be a good first place to get some professional evaluations. Also, maybe put a flyer up at the uni. A student of OT/SPD may be willing to babysit (if you can afford that) and offer some student/professional help. 

• Talk to your pediatrician. I was surprised that my ped was so knowledgeable about LD. She/he may also be able to help you navigate the insurance situation.

• If you do end up knowing that you're going to drop a bunch of money on some evaluations and can raise the money, I would ask around for all the medical tax relief and savings programs available. 

Keep us posted! 

[pickle18]

Quick update: I really love the Out-of-Sync Child Has Fun ! This will be immensely helpful in between now and whenever we can get an OT eval (DH has agreed to pursue it when finances allow - probably around the time of DS' 2 year check up, so we can talk to our ped). All the activities are the sort of fun things I remember from pre-school, but clearly have potential to help DS with his triggers as well.

I was beginning to panic and feel a little like I'd fallen down the rabbit hole. Between doctors and diagnoses and insurance and so on - information overload.  I stress, I second guess...so I returned to my old standby, Raising Your Spirited Child (since this book could have been written about DS - it fits him to a T!). Her tone is so warm, casual and helpful.  In the chapter on sensitivity, she describes the spectrum of normal kids to sensitive kids to possibly SPD kids. She simply states that kids who fall into SPD territory may benefit from OT.

Something about the simplicity and positivity of how she stated that really helped me clarify my thoughts and feel better. 

Also, we got a shirt on DS today! Which is progress, since we've been stuck in the house all week  - he was visibly anxious and upset, but not violently so. I just got on his level and gave him firm hugs and told him I knew he hated it, but asked him to just try it - and he really was trying.  He responded by nearly instantly falling asleep (just tired? shutting down? a little of both?).  Anyway, it's something!

Thank you for the advice, IdentityCrisisMama!

[Linda on the move]

on paying for therapy --

once we figured out what sorts of things were most helpful for my DD, we were able to find low cost ways to make those happen. A HUGE thing for her is having her body move through space in different positions. Gymnastics classes through parks and rec filled the bill for awhile. Swimming became very important for her -- it was the perfect therapy, and eventually she got to be such a good swimmer we put her on a team!

It's different things for different kids, and while this type of movement was what my DD needed most, it could be something very different for your little guy. Whatever it is, once you know what it is you can figure out how to make it happen without breaking the bank.

In the end, my need to find cheap therapy options for her worked out well for her. She loved being on swim team and never thought of it as OT therapy, which most likely helped with her sense of self.