Out on a limb... hanging by a thread...

iVillage Member
Registered: 09-18-2008
Out on a limb... hanging by a thread...
10
Sat, 05-15-2010 - 10:40pm

Okay,

I don't even know if this is the right board for me to begin, but if anyone stumbles upon this and can offer some insight, I'd appreciate it...

I have a dd (6.5 - first grade) this year has been a nightmare in school and even at home. I've always kinda known that dd would need extra attention with homework, projects, guidance, etc. (call in mom's intuition or whatever), but I could tell from about 2.5 on...

Story is - dd didn't walk til 21 mos. has ALWAYS been obsessed with Max and Ruby, has SEVERAL imaginary friends she talks to constantly, trouble moving from task to task in school and at home, needs reminded every 2 minutes to continue what she is doing, has very little emotion when others are ill or bad things happen(but will cry instantly when it affects her), never socializes at parties or playdates (prefers to play with imaginary friends or off on her own), is easily overwhelmed in large groups, could never stand loud noises, is hard to bring out of a fit, asks the same questions over and over and over again even when a consistent answer is given, is given consequence for punishments and rules, but does not follow and then throws fit when consequences are given, cannot control emotion, has angry outbursts on occasion, does not understand or recognize danger or something that will harm her (would run out in front of truck to see a bunny if I did not stop her), cannot hold back when she has something to tell us - no matter what is happening around her, interrupts conversations with things that have no relation to what is happening or being spoken about, is very timid physically, cannot ride bike and is not coordinated.... I could go on...

We have see her ped and are being treated with first Adderall and now Concerta for ADHD. I don't think this is it. It may be ADHD, but I think there is something more. The medicine is helping school work, but the emotional, obsessive symptoms have continuously gotten worse over this school year.

We are scheduled to see a psych in October, but we really wanted to get an eval over the summer. I've been trying to find out more of what could be going on with her and I have been reading more and more on Aspergers. Does any of what is going on with us relate??? I just don't know what to do for her. I'm trying to find the happy medium of helping her without enabling her.

So many people misjudge her and don't understand where she is coming from and they also misjudge us (parents). They act like we are parents who give in, so that is why dd throws a fit when she doesn't get her way. It took the whole way to January for her first grade teacher to finally have a clue on how to handle dd, but she still isn't doing what needs to be done for dd - she is just doing what needs to be done to get dd through the school year.

DH is unsure of aspergers, but he doesn't see dd in social settings. DD is fantastic one on one at home. Hates sports - loves art. I just want to find out what is going on and do whatever I can to help her be the happiest little 6 year old she can be.

If anyone can offer any insight/suggestions, please. Thank you!!!

iVillage Member
Registered: 02-28-2008
Sun, 05-16-2010 - 12:45pm

Welcome to the board.

I"m just another mom, not a professional, but I think you are right in wondering if your daughter might not be on the spectrum. It's is certainly worth having her evaluated by a professional who is well versed in kids on the spectrum. That's the key point. Not all psychs, peds, etc are up on what to look for.

The best professionals to seek out for this are neuropsychologists, developmental pediatricians, or psychologists who work with kids on the spectrum. Your pediatrician, local hospital, or the psych might be able to give you a recommendation. Children's hospitals are good resources.

It's difficult to parent a kid on the spectrum - the standard methods don't often work and the methods that do work are time intensive and often non-intuitive. What other kids learn by osmosis and observation - spectrum kids have to be explicitly taught. But they can learn and make improvements.

Feel free to hang out here and get to know the crowd. It's a great bunch of ladies with lots of BTDT knowledge and experience. No dx is needed to belong here - just interest.

Hope to get to know you better as time goes on. Ask as many questions as you want or just vent and share. We're here to help you.

Andrea, mom to

Graham
Miles
Anson

Andrea, mom to

Graham
Miles
Anson
iVillage Member
Registered: 06-25-2003
Sun, 05-16-2010 - 12:48pm

Hello and welcome,

It does sound like you DD has a few red flag for Asperger's syndrome or something similar. One big red flag to me, was the fact that the ADHD meds seem to make the obsessive behaviours worse. This is common in ASD kids.

Of course was can't tell you for sure as we are not professionals, but I think you should definitely have her evaluated by someone who knows their stuff regarding the Autistic spectrum. Check your local universities and see if they have any programs. Both my kids were evaluated at a university and they did a very good job.

In the meantime please free to hang with us and ask questions, vent or cry as much as you need. We understand what you are going through. We have all been there.

-Paula

-Paula

visit my blog at www.onesickmother.com

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 03-27-2003
Mon, 05-17-2010 - 2:15pm

Welcome.

                                

iVillage Member
Registered: 06-16-2004
Mon, 05-17-2010 - 2:50pm

Everything you said sounds familiar. DS is 14 and was diagnosed PDD-NOS at 8 or 9. Like you, I knew something was up way earlier but it was hard for professionals to see it let alone know what professionals to seek out. So my heart truly goes out to you because I know the hanging by a thread feeling all too much. We still struggle with helping vs. enabling. Our DS can seem so typical that teachers and even we have trouble understanding the limitations sometimes. But your description was very familiar, no friends, no parties, lack of concern for others, preferring solo play.

You said you are scheduled for an eval in Oct. That is a long way away. Is this thru school or your personal health insurance? Either way you need to make some noise and get that appointment moved up. I know how hard it can be to ask for help and admit needing it but the sooner she gets into a therapeutic program the better. So call frequently and ask if there have been any appointment cancellations you can have or be blunt and let them know what an emotional strain this is on your daughter and your family. You might get in sooner.

What you said about people perceiving you as bad parents is also familiar. After a while we just stopped going places but that is no way to live so that is another reason to get help sooner.

One of the most important things is for you to take care of yourself and take breaks. Take time to yourself even though you feel like you want to spend every waking minute searching for solutions/answers. That is normal mother instincts but if you get overwhelmed you are no good to your daughter or anyone so get that pedicure and go shopping with your girlfriends on a regular basis.

And please ask the board here anything. It has been so comforting to me to know others are in the same boat and it does help to see what to expect as your daughter gets older.

Good Luck,
-Christine

iVillage Member
Registered: 07-24-2003
Sat, 07-03-2010 - 10:54am

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Really? That's common? Is there a resource for that information that I can show a doctor?

Our daughter is nearing 8 and we've been dealing with diagnosis issues since she was 3. We're in the middle of a new round, so I'm reading a lot again. This particular issue with medication is something that I don't remember seeing before now. Our daughter's current dx is something like ADHD/anxiety/SID/processing differences/social delays (but new ASD evaluations are upcoming). She's been on ADHD medications for 2 years and every time there's been any kind of change in medication/dosage my number one complaint is that she gets obsessive, and tends to hyper-focus on specific interests. Neither of her prescribing doctors thought anything of that.

iVillage Member
Registered: 06-25-2003
Sat, 07-03-2010 - 1:25pm

I do't remember where I heard it. There is a book out there about drugs and kids. It might be in there. Evelyn knows the name of it, and I hope she chimes in.

But if you think about it: it makes sense. ADHD drugs improve focus. Therefore, if a kid already has excessive focus on a particular item, the ADHD drug can increase that focus from excessive to *obsessive*.

-Paula

visit my blog at www.onesickmother.com

-Paula

visit my blog at www.onesickmother.com
Avatar for littleroses
iVillage Member
Registered: 03-28-2003
In reply to: amazinggracesmom
Sat, 07-03-2010 - 5:19pm
iVillage Member
Registered: 09-13-2006
Sat, 07-03-2010 - 7:39pm

Did somebody call?

There's a book that I'm always mentioning called "Straight Talk About Psychiatric Medications for Kids" by Timothy Wilens, M.D.

I don't recall seeing the stuff about ADHD meds, but last time I was reading it, I had no idea that David has ADHD as well (but he does). When he was little, DH and I used to jokingly say, "Well, it's obvious he doesn't have ADHD," because he would sit and focus on one activity for hours at a time as a toddler. One day he spent six hours "vacuuming" our carpet.

He's never been on ADHD medication before, but I shudder at the thought of something that makes him more obsessed with the things he's already obsessed with. He suffers quite a bit because he can't get his mind off of the things he's obsessed with and onto other things. All day he's been slumped on the couch, complaining that he wants to do certain creative projects, but he can't get his mind off of Lego's line of Bionicle replacements. It's too easy for me to start getting on his case for being dissatisfied and lazy, so I really have to remind myself that things aren't so easy for him.

Evelyn

Avatar for littleroses
iVillage Member
Registered: 03-28-2003
In reply to: amazinggracesmom
Sun, 07-04-2010 - 2:29am
iVillage Member
Registered: 07-24-2003
Mon, 07-05-2010 - 11:12am

Nikole,

I was skimming through the board the other day and didn't read your post very carefully. I'm sorry. Things get hectic around here, as I'm sure you can imagine, and I don't always read carefully.

However, as I was going through archives this morning I came across an earlier post of yours that made me revisit this thread. Your daughter sounds a lot like ours. Our daughter is nearly 8 and heading into 3rd grade, and we've been struggling with all the same sorts of questions for a few years now. Our daughter's situation is complicated by an underlying medical condition that rare enough to be poorly researched. No one knows how to assign symptoms and the diagnostic process has been rocky.

We home school half time, and it's been a unique experience. There have been some changes to her school situation for this fall, and we're in the process of reconsidering full time home schooling for her. I'm not sure I personally have the patience and organizational skills to pull it off, especially with the preschooler hanging out demanding his share of attention.

I have found that, contrary to all expectations, a vaguely un-schooling model works best for her. She can be very academically motivated, but only if she chooses the subject. We can get A LOT done quickly if I can fit in her interest du jour. She did this massive writing/research project involving Greek myths this year (Thanks to Percy Jackson). It was so good her grandfather insisted to her that mommy must have done most of it. (no) However, getting her to learn her multiplication facts has been a year long exercise if frustration. It's seriously going to kill me. She's not interested, she finds it hard, she's going to find excuses to no do it.

Anyway, I need to run. Kids getting up and medicine to administer.

Mary