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Is that little voice inside that says "I think something's wrong with my kid" enough

post #1 of 12
Thread Starter 
reason to seek an evaluation (or something)? And where do you start? My child is not obviously delayed in any area, in fact she's very smart (5.5 and doing mental math and asking things like "How could the first person be born if there was no mommy and daddy?") and has great motor skills (she writes and draws, rollerblades and does the monkeybars). But there are some things, things we've always said are quirks or discipline issues (meaning if we just did a better job being parents these struggles would go away). But I'm just so tired of searching for the magic combination of techniques and clothes and enviroment and empathy that will make life easier for both us and her, more importantly for her. We're still struggling with issues we started struggling with two or more years ago, and sometimes we think it's improving and then we have this awful, painful phase when it all gets worse again.

I'm not sure I can blame our parenting skills anymore. We've tried it all. We are decent parents. It is not nearly as hard to parent our two younger children. They don't have nearly as hard a time with life as our oldest does. But it's confusing, because only a few close family members have ever seen enough to be concerned. Most people see our daughter as this sparkling, gentle, kind, beautiful, empathetic, peaceful, smart person. Her preschool teachers think she's fabulous. I've always thought that if there's really something wrong, at least her teachers would see it. So is that little nagging voice that wonders if maybe something's really wrong with her, something that might improve if we got help, really enough to start down the road of evaluations and possible diagnoses (or misdiagnoses)?

(What kind of issues am I talking about? Aggression that I feel is inappropriate for a child her age (daily, repeated aggression)-and sometimes her affection seems aggressive: hugs too tight, smiles at the baby then grabs her roughly by the neck; difficulty getting dressed and out the door because her clothes "feel funny"; inability to regulate her emotions in a way I'd think is normal for a kid her age-if she's upset she's a tornado and there's no talking or problem solving or even comforting her; she has tics-3 right now:constant eye-scrunching/blinking, head shake (like when you flip the hair off your face), and frequent rubbing of the bridge of her nose so the skin is quite red; she's extremely ticklish-I can barely touch her and forget the lotion she desperately needs, she just can't stand it if I try to rub lotion on her; she still has difficult transitions even with warning-when she's with Nana and I come to pick her up she hates me and wants me to leave for 10 minutes or so, and she still tantrums leaving places after the 5, 4, 2 and 1 minute warnings (not always). I'm sure there's more but I'm NAK and my brain is feeling fried. As I read this it sounds like she's just spirited and sensitive, which I'd agree with, but there's that doubt in my mind about how normal her behavior really is- not your average "is this normal for her age?" kind of doubt, but the scary "maybe this isn't normal even for someone who's only five" kind of doubt, kwim?)
post #2 of 12

I think I know what you mean...

I will have to call my friend to ask the name of the book that you should read, but it sounds like your child has issues with certain stimuli. Like for instance, the tags on her clothes absloutely drive her crazy? Two close friends of mine have this similar situation, and they follow this book to work on their issues. It has nothing to do with parenting, or intelligence. It's simply the way they are. I promise to find the info and post back.
post #3 of 12
She has sensory issues- read The Out of Sync Child. Because she has several tics, I would take her to a good neurologist to make sure there isn't somethign neurological going on, and also just to double check development.
post #4 of 12
That little voice is a mama's instinct and there is no book, no class, no nothing that will ever teach it - it's just there.

I agree that she has sensory issues and I would check out the tics, too. There are many threads on SID here which can probably help as well.

Good luck!
post #5 of 12
I just wanted to chime in and say ITA w/the others, sounds like sensory issues to me as well. I had to push to get my son evaluated against his pediatrician's judgement. She and dh didn't think he had a need for an OT eval, that he would just "outgrow" whatever "phase" he was in. Yeah. He's got SPD and is in OT once a week now. Glad I pushed.

Mama's instinct is usually correct. Go with it. Push for an evaluation by an occupational therapist or an EIT.

Good luck to you.

ETA: definitely check out the book "the out of sync child," I think it would really speak to you and be a great help.
post #6 of 12
Always listen to your gut feelings on this-I felt the same way, but was constantly told nothing was wrong with dd. But there certainly was-SID, ADD, and massive dyslexia, to the poiont that she couldn't read until she was 12!! I have beaten my head against a wall for years because I didn't get help sooner. There are so many great behavioral and nutritional therapies out there now! The sooner you can take advantage of these, the better. And I agree-read the Out of Sync child-it really helps!

Deb
post #7 of 12
My oldest has Tourettes and tics and emotional intensity are still an issue for him. He had some of the tactile stuff too. The truth is that you can have an eval but I even the best neurologist may have little to offer. If you see some wierd stuff, you are probably right. And the way I see it, tics are a sign of what is going on in the brain so you can bet there is some misfiring going on. School never saw his problems the way I did. He acted completely different at school and then fell apart at home with me.

If I gave you a name for it, what would you want next? Her emotional intensity might respond to antidepressants but she is doing ok and pretty young to put her on antidepressants although I sometimes recommend it.

The tics aren't going to be able to be treated, really- the meds for tics are way worse than the tics are.

One of the best things I ever did was go to the Tourettes support group and share ideas with other parents. I suggest checking the National association if that diagnosis seems to fit.

Other than that finding a therapist who understands these kind of kids might be helpful. The truth is- and I am a therapist, many therapists are very non-helpful in this area. If they have never actually dealt with a kid like this, all their wonderful suggestions just aren't going to work and will just increase your frustration.

So, think about what you really need. I think you are right on in your analysis but then what? She is just going to be a tough kid to parent. Get as much support as you can.
post #8 of 12
Yes! The earlier the better.

SI seems to run in dh's family. Both my girls have it. With Abi I noticed her differences and difficulties at around 12 mos. although she *refused* to nurse from the start despite LC's and trying everything. That should have been my first clue.

I kept bringing it up to the ped, whom I trusted as a first-time parent, and the ped kept saying she was fine. I knew she wasn't. Friends would make comments about Abi being "unique" and "intense" and one suggested she might have Asperger's.

So then Nitara was born with all kinds of feeding issues. The same ped told me it was just colic, all the screaming for hours, and not eating, and spitting up 2 hours after the last feeding. Finallly I took her to ER after she didn't eat for a whole day and wouldn't stop screaming, and she was admitted for 6 days, dx with GERD, FTT, and possible SI, and sent home with a feeding tube down her nose. She is tube-fed by stomach tube to this day.

Nitara was dx with SID at 6 mos. old and started therapy shortly after. She has had huge improvements because we caught it early. She just graduated from OT but is still seeing a feeding therapist and will for years probably.

Through all this stuff with NItara I learned about SID and Abi fit the bill as well. In fact her outward behaviors are more severe than Nitara's. (Nitara's SID manifests mostly with reflux/vomiting but enough other things for the SID dx). So then we took Abi to a child psychologist who, over a series of weekly visits and observations, ruled out autism, ADD/ADHD, and so on. She had behaviors that fit all of those categories but not enough to get a dx in any of them.

SHe referred us to an OT. Three OT's later we were convinced she had SID. Two OT's observed her while working with Nitara and the third did a formal eval at Abi's former preschool.

I wish I had listened to my heart and gotten help for Abi sooner, and gone above the ped. Nitara is doing so well thanks to early intervention. Abi is having a much harder time because her habits are set now, her brain is organized in such a way. She is outgrowing it but it was a hard, hard time with her as a toddler. I wish I'd had help and therapy for her.

I wish that I had, for Nitara's sake, not accepted the colic diagnosis. If we had treated her GERD earlier on before she became afraid of eating because of the pain, she might have not needed a feeding tube.

Sigh.
post #9 of 12
Thread Starter 
Quote:
Originally Posted by MsMoMpls
If I gave you a name for it, what would you want next?

So, think about what you really need. I think you are right on in your analysis but then what? She is just going to be a tough kid to parent. Get as much support as you can.
Maureen, you know, I was thinking about this a lot last night and talked to a friend who does therapy with kids and she said a lot of the same things you did. So I was mulling over what it is that I need, and it's not so much that I want a name for what's going on with her (and I definitely don't think she needs medication) as it is that I'd really like to know what I can do to help her-you know make her day to day life a little easier. I watch her having a hard time because she really wants to wear those pretty tights and she tries to get them adjusted in a way that they'll be okay, but they just feel too funny, so she can't, and I can't do anything to make it better. She wants to play in the snow and go sledding, but the snowpants feel funny-and she can't go without them playing in the snow on a cold day (at least not for more than a few minutes before she's freezing), so she's frustrated. We never know which socks will feel right-even she doesn't, what worked yesterday doesn't work today. I think she'd like to have more fun and less fighting with her brother, but she seems to escalate to very angry in the blink of an eye. It's really difficult helping her learn just to ask for help instead of hitting. The harder things have been, the more we've hurried or struggled over clothes or struggled with the aggression or any number of other things, the more we see her tics (they seem so closely related to how difficult the day or week has been). So I look at her, tic-ing away, and I just want to help her feel relaxed. And sometimes I really just don't know how. So my friend said what I'd already been thinking, and that is that if we're going to see anyone, maybe it should be someone I go to for support-a parents' group or a counselor. I wonder if maybe the most helpful people we could turn to would be parents going through similar difficulties. Though I do think it couldn't hurt to see an OT on our own, to learn some things to help her with her sensory issues.

Everyone, thank you for sharing your stories. It's helpful to hear what you've all been through. I will read The Out of Sync Child, and I will see about finding an OT. I think I feel most lost when it comes to the sensory issues. I think of all the professional people we could see for help, an OT might be the most likely to offer us something useful.

Thanks again, mamas.
post #10 of 12
You verbalized all my feelings in that post, sledg. When my dh asked why I was pressing so hard for an eval, I told him because I would like to see our son go through life with joy and zest, not frustration and fear and constant battles. OT is teaching him to cope, to adapt, to learn how to deal with things he finds frightening and/or defensive. I told my husband that if we don't intervene NOW, preschool and elementary school will be awful for him and his problems will manifest in much more aggressive and disturbing ways later. It's not so much about having a "diagnosis" as it is about finding HELP for you child to just be able to get through day to day life without a million meltdowns from just...well...LIFE!

By the way, here's a webpage you might find interesting. Give it a read:

http://www.out-of-sync-child.com/examples.html
post #11 of 12
s Yes that voice is enough, that is why it's there mama.

I do agree it sounds like sid or something, good luck!
post #12 of 12
I agree with other posts. Sounds like SID. I must add that we took our daughter to be diagnosed and they said she was "just" sensitive and that all kids hate "having their face washed, having their hair brushed, bang their head on the wall". Thankfully our pediatrician recommended OT and that is helping so much. The techniques she is teaching us to help our daughter get through her rough times are really paying off. Some things are still triggers, but she is only 2. She gets very upset if something isn't where it should be, be it a brush, a pair of shoes, a ball of cat hair stuck on the carpet can send her into a rage.

I would also like to suggest the Feingold diet. This has been helping with her self destructive behaviors. She can not have artificial flavors or color which are in motrin, multivitamins and so many other items. And we have eliminated foods high in salicylates. She has stopped gagging herself and biting her hands. No more head banging and her tics have been drastically reduced and usually only show after she has had a motrin. The Raising your Spirited Child is helpful, but it sounds like you might have read that already. Good luck in your quest and NEVER doubt your inner voice! You won't regret that!

hugs.
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