What biomedical/dietary stuff DID NOT work for your kid with ASD? - Mothering Forums

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#1 of 17 Old 07-09-2013, 12:33 AM - Thread Starter
 
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Not wanting to start any arguments here. 

DH and I have been reflecting on all the stuff we've tried/are trying with DS over the past year and a half that we suspected then confirmed that he has a autism spectrum disorder. One of the reasons is that DS is starting daycare/preschool in the fall and this is bringing a new and very big expense that we are fitting into the budget and along with all the supplements and special foods (and consulting with therapists, books for help and info etc.) that DS gets it's a lot. Yeah, I know kids with special needs are expensive and of course it's worth it. I'm just reflecting on what has seemed to work with DS and what's made no difference and curious about other's experiences too.

 

 

I've been back and forth about the GFCFSF diet for my son. We took him off it very briefly after he seemed to make big developmental strides last summer, he wasn't gaining weight and we questioned if the diet was making a difference and if limiting what foods he could eat was a good idea. Then he had a really bad spell of worse sleep, behaviour, etc. But that also coincided with some big changes in our lives. So he's back on it and has been for the past 11 months. And he's had big ups and down during the time in what we've witnessed as a cycle of big steps forward along with occasional steps back- so we've often wondered if the diet is even doing anything. It is a big expense for us- living abroad the GF and dairy-free soy-free options are few and very very expensive in our part of the world. So now that he's starting school and we will have other people keeping a close eye on DS's behaviour we think we'll try him off it after a few weeks of school- once they've seen his behaviour on the diet they can compare with us to how he is off of it. 

 

And I've also tried supplements - B6 magnesium etc. I've never really seen any difference. DS does take other vitamins and minerals and supplements that I would normally give him anyway so those I'm not questioning (D, Calcium, fish oils). It's the special regiments that are expensive for us (again, these are more expensive living here).

 

As he gets older and he notices that he is on restricted diet and that he takes all these supplements it kind of sucks too. eyesroll.gif A small part of it is just us wanting him to enjoy the things we did as kids- an occasional ice cream treat (we can't find dairy or soy free here), birthday cake, not having to take pills every day. 

 

Anyway... So what didn't work for you? How did you come to the conclusion that it wasn't working?


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#2 of 17 Old 07-09-2013, 05:32 AM
 
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GFCF did nothing whatsoever for my son. After about 2 months of buying incredibly expensive food that he wouldn't eat, and watching him lose weight when he was skinny enough to start with, but with no reduction in his ... what? Autism-ness? I took him to a naturopath for allergy testing. The naturopath determined that he wasn't allergic to many foods (he was allergic to some pet danders, molds, pollens and latex), and we went directly to the store to buy his favorite mac & cheese and we've all been happier since!

As far as supplements go, I haven't noted a huge difference in him with OTC supplements. However, his dev ped started him on Vayarin this past winter, and it has made an ENORMOUS difference in his ability to focus and concentrate. Vayarin is a supplement of sorts ... I believe it's classified as a medicinal food or similar? It is EPA/DHA, but however it's formulated, it reaches the brain more effectively instead of the majority of it going to the heart.

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#3 of 17 Old 07-09-2013, 07:31 AM
 
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GFCF diet did nothing for my son, as well. This is just an inkling and purely my humble opinion only, but it seems the GFCF diet works best for higher functioning individuals.. my son is on the severe end of the spectrum and functions on a 15 month old level (he's 16 years old and developmentally delayed).. yeah, diet did not change that. If anything, it exacerbated behavior issues because he could not have his favorite foods and did not understand why.


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#4 of 17 Old 07-09-2013, 08:39 AM
 
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We are not GFCS either. It was a brief experiment in our lives that seemed to do nothing but only further limit the handful of foods DS1 will even attempt to eat. Nor do we take any supplements these days either.

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#5 of 17 Old 07-09-2013, 11:32 AM
 
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expat-mama, as you know from my posts, I am a big proponent of the diet.  I am not completely certain why it works so well for us and others say, nope, it does nothing for my child.  My guess is that, spectrum disorders stem from multi-factoral causes of which metabolics is a small but key part.  I also am helping him detox heavy metals and I heavily supplement him as well as fortify his digestion with tons of probiotics and enzymes.  But without the diet, my son is dysregulated, wild, tired all the time, sensory sensitive, unable to focus, anxious and quick to anger.  He's like a bundle of nerves.

 

He used to need a full time aid to help him get around the school.  Within six months, much if not ALL of this washed away.  It has now been close to three years of being "clean" and you know how I describe him now.  It is like night and day.  It took time to get to this place, and diet does not take the place of teaching and skill building etc.  He still had big gaps in his learning but he isn't stuck any more and it's coming easily now.

 

The reason I am responding to this post is not to be contrary.  I know you are questioning what if any of your interventions are helping.  The only way to know for sure is to stop everything and maybe it's important for you to see for yourself.  However, I've been down this road...many times, and from where I am I really regret questioning myself and doubting my own knowing.  My son also regrets his "lost years" because that's what he calls them.  That happens to be my lesson in life.  I KNEW that changing his diet helped him when I first put him on the diet but doubted myself time and again.

 

I wonder if I had just had the inner strength of my convictions to stick with the path we were on when I first put him on the diet at 13 months, would he have had a more even, level developmental trajectory?  Would he know and see himself differently?  Would I have saved him the pain of seeing himself as an anxious, angry and out of control kid?

 

For what it's worth, he is old enough, (and wise enough) that he, despite missing his favorite foods, knows it helps too.  He says that his head is cloudy, he is lost in his thoughts, and has a hard time learning and controlling himself when he isn't on the diet.  For what it's worth, there were enough years he wasn't on it, that his educators also know my son "on and off the diet" and said it was a remarkable shift.

 

If that helps I am glad.  It isn't my intention to make you feel worse.  Because none of this is easy.  These are hard choices to make and no one can make them for you.  But, if it makes you feel better on a certain level, I have also spent a lot of money, on things that didn't work or only partially worked.  But, lucky for me, I never wanted to be "rich".... I only wanted healthy children, and a sweet life of enough abundance.  So the wasted money is just money.  So i'll ask you.  Do YOU think the diet helps.  Does it help him stay calm, clear and engaged for learning?  If so, keep at it.   And, financially, if it helps, there are wholesale food and vitamin websites that sell at greatly reduced prices that also have free shipping fees.  Just google and see what comes up.  I use a place called vitacost.

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#6 of 17 Old 07-09-2013, 11:46 AM
 
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FYI, my son was on the diet from 13 months to 19 months, 2 1/2 to 4 1/2, 6 to 7 and then again from 9 to his now, which is age 11 3/4. 

 

If this helps you too, I have found that I am healthiest when I eat gf/cf.  It's hard to explain and it often can take six months to completely clear out gluten from your system, but, I loose weight still eating the same caloric amount, I loose food cravings, I no longer get migraines, I think more clearly, I'm emotionally calmer and more regulated....just putting it out there.

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#7 of 17 Old 07-09-2013, 03:57 PM
 
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livinglife, I don't know if it helps the OP but your post helped me. Immensely. I am so torn about what to do. I posted in Parenting about my 4 yr old driving me crazy. What I didn't post is that he is currently off-diet. I had him on a GFCF diet from around birth to 15 months for GI symptoms. We went off until he was 3 then did vegan for 9 months (good results as well, though not GF) then we did GFCF again this year for about 4 months until I got pregnant and needed easy food since I was exhausted and sick. We see remarkable changes in him but I lose motivation every.single.time. either due to money worries, self-doubt, and can I just say it, plain old laziness. I don't like cooking which I have to do on our budget to do GFCF, and yeah I have kids that won't eat stuff I make too. I think its easy to become detached from the behaviors once they start to fade, and in our case they take a while to come back after we go off the diet. I convince myself its just the normal ebb and flow of development. And it is true that the diet add stress to us which obviously isn't great when you are already dealing with challenging behaviors.

 

I think the key for me if we do it again will be take detailed behavioral records. A little overwhelming to do when so many in our family have issues. I think food affects me too so I am often spacey and impulsive which makes sticking to a diet hard. I know that I did better on both GFCF and vegan diets and I need to decide if I want to go back to that or maybe go gungo ho with something like SCD or GAPS. Every person, every single person in my household has a diagnosis that GAPS is said to help. But holy smokes, what a commitment! 2 years to really resolve things. Still, the two years will go by anyway, won't they? I have a almost 2 year old and a baby on the way and I am so afraid that they too will develop symptoms if I don't do something. 


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#8 of 17 Old 07-09-2013, 04:05 PM
 
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OP I wanted to answer your question. With my oldest son who has Aspergers, ADHD, Bipolar NOS, and anxiety the GFCF did not improve behavior and as PP have stated caused increases in negative behaviors because he couldn't have his favored foods. Threw a gigantic tantrum at a family party because he didn't want our GFCF cake, he wanted the regular cake and ice cream. I got in a huge fight with my sisters who criticized my parenting and it almost tore our family apart. Food changes are extremely stressful when you go against the mainstream. So though GFCF did help my preschooler and my 12 year old, I did not see a profound difference in my older kids. Perhaps its an age thing? I really don't know, but just wanted to share that results can vary even within a family. It makes it really confusing! 


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#9 of 17 Old 07-09-2013, 04:35 PM
 
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earthmama4, thank you so much for sharing that with me.  I totally get it.  I also have been very afraid for my youngest.  I ate gf/cf while pregnant and then while nursing.  It was when she began eating a "regular" diet she began to show gross and fine motor problems.  Now, she's on the gf/cf diet and has been for a year, and low and behold, her gross and fine motor skills are improving at a good rate.  In another year, with the diet, and more OT/PT I'd expect she'll be doing fine. 

 

It takes me a long time too to link symptoms with a return to "regular" eating.  We'd, for a long time, do a little bit of pizza, a little bit of cake.  I would allow it only at parties, or, say, you can have it once or twice a week. 

 

It would make him happy in the moment, and it would take a while, but six months would go by, and the challenging behaviors wouldl return but also crises.  He had an episode of asthmatic breathing that required hospitalization.  Crazy!  He'd never been an asthmatic, ever, in his life....and on the diet...he isn't an asthmatic.

 

You're right, it is incredible discipline.  I say i've earned my stripes....it's time for my wings ;)  I do REALLY know what you're talking about.  I've felt sad about this, at times, lazy, at times, judgy (toward my circle of moms who gave up foods for health) because I always wanted to believe that a little of something won't hurt you.  Now, coming full circle, I think, if we never are able to eat gluten or casein, it is o.k. with me as long as we are healthy. 
 

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#10 of 17 Old 07-09-2013, 09:17 PM
 
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Unlike so many kids I hear about with ASD, my kids (son is HFA, daughter is Aspie) never had digestive issues. And despite the fact that they are ridiculously limited in what they will eat, they both became quite overweight starting at age 6. Daughter has finally slimmed down because she is growing like a weed. Son is still overweight. So I never had the concerns of being "too skinny" that others speak of. And we have no GI issues to "cure". 

 

With that said, DS has meltdowns and these used to happen pretty much every day. In desperation I finally tried the GFCF diet. After 6 weeks of eating ridiculously expensive and overly processed foods DH asked me one day if I could remember when DS last had a meltdown. I couldn't. I then re-introduced dairy because I hated the processed crap he was eating in its place (dairy is probably the only really healthy thing he eats) and nobody in our family has any dairy issues, etc. After weeks we noticed no changes. I then reintroduced gluten. At first I thought "no difference, must have been a coincidence" but about six weeks later he began having daily meltdowns again. Back off the gluten and, sure enough, meltdown frequency dramatically decreased after about 4-6 weeks. I've fallen off the wagon enough times to be certain that gluten affects his behaviour. It's not a miracle cure by any means, and on the plus side he is able to handle gluten in small amounts so the odd hamburger at a drive through when all the other kids are having one is not an issue. 

 

So that's our story. Dairy fine, gluten affects behaviour. He is still challenging, don't get me wrong, but at least I'm not dealing with daily meltdowns. Now they happen maybe 2 - 3 times per month, if that. And that is worth it to me!


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#11 of 17 Old 07-10-2013, 12:40 PM
 
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I've noticed in the kids I've taught, with some it makes a huge difference, others, not so much. Working with thousands of kids over the years, On the spectrum or not, It probably is a highly individual thing. So if you're dealing with highly challenging behavior it's probably worth a try. And sometimes it makes no difference at all.
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#12 of 17 Old 07-10-2013, 08:52 PM
 
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For about 9 months, YoungSon (maybe 8 at the time, dx'd with PDD-NOS, anxiety issues, severe dyslexia, and I don't remember what all else) was 100% GFCFSF, and nearly anything else you can think of free. After a perceived choking incident, he put himself on a strict clear liquid diet. Apple juice, white grape juice, and homemade chicken/veggie broth, strained through cheesecloth. Nothing else. Absolutely no exceptions. There was no noticeable change in behavior. When he started eating again, there was also no behavioral change.

 

I admire the families that can be disciplined enough to try dietary restrictions like this. I would probably never have tried it if I hadn't been forced to.

 

We also tried homeopathy, several therapeutic approaches, specialized tutoring for dyslexia, and whatever else, all to no effect.


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#13 of 17 Old 07-10-2013, 10:49 PM - Thread Starter
 
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Thank you all for your replies. It does seem like it's an individual thing- whether the diet works or not, I mean. 

We WANT it to work so much- when I read the stories about what a difference it made for so many people I wish that were us, but I'm starting to think it's not.

 

A PP mentioned that the diet seems to work for "higher functioning" kids- I actually thought this was the opposite. Reading anecdotal experiences on the web, it seemed to me that it was lots of nonverbal kids who became verbal, kids who stimmed all day and had no eye contact etc, suddenly drastically changed these behaviours. My son is very "high functioning" (I've come to dislike this term, but am not sure of another way to put it- I think that "low functioning" kids are likely just "very differently" functioning kids) and that's one of the reasons it's hard to tell if the diet makes any difference. He's extremely verbal and affectionate, he doesn't stim noticeably very much at all etc. He also never had any GI issues that would be easily connectable to a problem with dairy and gluten.

 

I have no doubt that these dietary and biomed approaches work for some kids. I guess I wish it was easier for me to really be able to tell if it makes a difference for my son. I do think we will go ahead and reintroduce dairy and gluten foods once I research the best way to go about this. As a PP said I'm going to try to really keep track of his behaviours- but I find that really hard to do. I mean what's normal 3-yo behaviour? DS is my first kid. I know it's supposed to measure between HIS normal and HIS not normal- but honestly this is so variable as well. He has good days and bad days like anyone else. I've never been able to attribute anything to foods or supplements. I know my son better than anyone else, but sometimes I think I'm not good at reading him in this way. ? I dunno.

 

Anyway, anyone have tips on how to reintroduce foods? Should I start with dairy? We are going to wait until he's been in school for a while so we have his teachers watching with us and so he is through that big transition before we start.


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#14 of 17 Old 07-11-2013, 12:16 PM
 
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I think what you have to keep track of is not behaviors but a stuck developmental pattern.  Since you know, that with appropriate skill building and teaching, he can and will learn social language and behaviors,  you can ask yourself, is he "catching on" or is he unavailable to learn due to other factors like anxiety, aggression or sensory overload, that the diet can help him even out? 

 

Of course, all of us have good and bad days, but I hope that having a few bad days doesn't make you call into question the effectiveness of the diet.  Sometimes, I think, people question it's effectiveness for their child, for just this kind of reason.  But life is full of bad days.  Usually though when we feel "well" and clear thinking, if we get anxious, overloaded etc we snap out of it easily, and are generally able to get back to the "fun" of life.  I have found that the diet hasn't "changed" the essential nature of my child which is still that of a concrete explicit learner but allowed him to feel well and clear thinking so he can be taught, things can be explained, and he can move on, without getting stuck or annoying his family, friends and teachers nonstop ;). 

 

What you want to prevent, I think, is getting stuck in a negative loop of many "bad" days, where it is hard to get back to the "learning" and "fun" of life. 

 

So, my final thoughts are, don't worry so much about tracking behaviors.  If you are dreading every day, feeling anxious about your child's interactions with other children because they look awkward and difficult, and dreading the teachers for what they tell you next you are in a "negative loop".  You'll know it.  And, reframe if you can, in your own mind what you are expecting from the diet.  And what do I mean by that?  What do YOU expect from it?  Do you want a "cure"?  I still personally don't know what to expect from it, and I am o.k. right now not knowing.  I think I've decided that as long as he is unfolding and in a healthy unstuck way, he will be who he is meant to be.  Do you know what I mean?

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#15 of 17 Old 07-11-2013, 01:23 PM
 
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... have not read the posts yet, and ds1 and  ds2 are not ASD. Ds2 had ADHD  type behaviors, and ds1 has sensory issues, especially auditory processing.

 

Removal of gluten transformed ds2.

 

Made absolutely no difference whatsoever to ds1.

 

They have been  on the GAPS diet for about 5 months.(no starches or lactose, lots of ferments, meat, and animal fats. Apparently casein doesnt seem to be a problem on this diet-lactose is the problem) Ds2 has lost alot of weight (was already skinny) and now acts 'glutenized' all the time.  Not onlyis he not eating gluten, he's not eating any starches!

 

I see no improvements for ds1 either.

 

It turns out that when not getting enough carbs, ketones can actually feed the yeast youre trying to kill off  (the toxic yeast causing  some of the  problematic behaviors).

 

Right now, im putting back a few starches into their diet to increase their carbohydrate intake.

 

However, at least i now know how to make homemade yoghurt and stock. 

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#16 of 17 Old 07-11-2013, 03:31 PM
 
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Quote:
Originally Posted by expat-mama View Post

 

 I mean what's normal 3-yo behaviour? DS is my first kid. I know it's supposed to measure between HIS normal and HIS not normal- but honestly this is so variable as well. He has good days and bad days like anyone else. I've never been able to attribute anything to foods or supplements. I know my son better than anyone else, but sometimes I think I'm not good at reading him in this way. ? I dunno.

 

Anyway, anyone have tips on how to reintroduce foods? Should I start with dairy? We are going to wait until he's been in school for a while so we have his teachers watching with us and so he is through that big transition before we start.

I get what you mean about "normal". I have no idea what normal is since my first 3 kids were all spectrum-y. My last 2 are not on the spectrum and I finally get what the difference is...although one of those is ADHD and that complicated my view of "normal" as well. I think livinglife has good advice, if you are dreading getting up and facing the day because behaviors, that is not normal. All kids are challenging but not to that degree that you are just plain worn out. For me I look at tantrums not related to hunger or tiredness, or any big changes from where we've been (mildly anxious to flat out refusing to leave the house, that kind of thing)

 

As far as introducing foods...I would start with whatever one you miss most, whatever one is hardest to do without. If you decide to start with dairy, I would do butter one week, then yogurt the next, then cheese the next week, and finally milk the last week. This is how we got our 15 month old onto dairy without triggering GI issues. With gluten, you can try starting with sourdough bread or sprouted wheat bread. Both are said to be less problematic and more easily digested. See how it goes with those and then move on to just plain wheat. 

 

One place where I always messed up was falling off the wagon completely and letting my kids eat a bunch of junk! Its so easy to find junk foods (esp ones we've done without for so long!) when eating dairy or gluten and later I find myself second-guessing whether the returning behaviors are the dairy/gluten or the food dyes/preservatives/HFCS etc. So try to keep away from those things just so it doesn't muddy the evidence and make things confusing.

 

Good luck!


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#17 of 17 Old 07-13-2013, 03:06 PM
 
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I get what you mean about "normal". I have no idea what normal is since my first 3 kids were all spectrum-y. 

 

lol. I can so relate to this. When I'm around friends whose kids are very NT, especially the younger kids, I often stop myself and just think "wow, that is just so different from what my kids were/are like. So that's what "normal" looks like!"


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