[AdoptInMe]

I have posted a few times on here, still trying to figure out what is going on with my 3-year-old ds. We still have no insurance, so although we have a referral to a genetic pediatrician, we aren't able to go yet. I have gone over every possible explanation from ADHD to sensory seeking to normal behavior that he'll outgrow. We just had a meeting with his toddler classroom teachers, and they say he's doing really well. They notice no signs of ADHD, and say he's a joy. He goes to a 2.5 year old class, but is now 3 1/4, two mornings a week. It is a very contained environment and there are two teachers that lead 10 kids and help them. One comment was that he is very bright and a "different kind of learner". He has to touch things to learn, they say. He is very curious and verbally way advanced. They think the issues that I describe may be that of a "gifted" child. I know he's bright, but I really don't think he's gifted. They have also said that he has trouble with classroom rules at the sensory tables and some other areas (i.e., sand stays in sand table, etc.). They then said, "maybe it is not defiance, but exploration" that causes him to disregard rules. I think he just doesn't get it. I mean, I know he understands what the rules are, but maybe he just doesn't get what will happen when he breaks them. He gets so upset when he's disciplined for not listening to the rules, like he doesn't expect it.

Now on to what I see. I see a little boy who is capable of putting his shoes on and taking them off, going to the bathroom by himself, washing his hands by himself. He is capable. He is bright and is very eager to please. BUT he can do nothing by himself. He knows what to do, but cannot get from point A to point B. He has to do 20 things that he's not supposed to do in between. Every single time!!!!! I am going crazy! I will ask him to go upstairs, get a pair of socks and come back downstairs. He will never come downstairs, and often doesn't have a pair of socks in his hands. He will go in the bathroom by himself, pull his pants off, sit on the potty, go pee or poop and wipe himself. BUT that's when chaos jumps in. He will fill the toilet with toilet paper, use it all, then get a new roll and put it on the bar. Then he will plunge the toilet (because it's over full), then he will make a mess. He can't finish with what he's supposed to do. He cannot flush the toilet, put his pants back on, wash his hands, turn out the light and come out. Most kids this age need a reminder to do these things, but he just doesn't even come close. He will fill the sink with water and soap, sometimes pee in the vases stored under the sink, anything but what he's supposed to do. He cannot clean up his toys. Impossible. He will get distracted by every little toy around. The ONLY way for him to clean up is if I hold his hand and instruct him the whole way. And even that is a headache. There is absolutely nothing he can begin and complete. I know he's still little, but I do expect him to be able to follow at least a 1-step instruction. And it's not a lack of intellect, he knows what he's supposed to be doing; he just goes off track every time. It's so exhausting! I am a home daycare provider, and I have a total of 6 kids in my home. He is one of my older ones. The rule when we come back from an outing is to walk in, take your shoes and socks off and put them on the bench, take your jacket off and hand it up, then you can play. This is the same every single day, and even my young ones will try to do this (they can't do all of it but they TRY). My ds does not. He goes and plays immediately. Then it takes about 12 reminders to get him to do it. If he did this in one aspect of life, it wouldn't bother me, but he does it all day long!!!!!

I have gotten info on this board about FAE. Does this sound like a typical effect of FAE? Or does it sound like ADHD (he also is very hyperactive, constantly moving, but IS able to concentrate and slow down when needed sometimes)? I know that ADHD is often an effect of FAE, but does anyone know what this specific behavior sounds like? He was severely alcohol exposed and drug exposed (although they all tested negative at birth, because their birthmom stopped doing anything and cleansed her system before birth).

[c.a]

Do you have Early Intervention (EI) in your state? In Mass. we can get an EI evaluation and services at 3. If his issues will interfere with his ability to learn, they are required to provide services. Check with your local school.

Good luck.

[AdoptInMe]

Since he is 3, we can contact the local public school for an assessment. I did and have not heard back, but I really question their ability to correctly diagnose him. They are so focused on development, and he is developmentally advanced. I will keep trying, but thought I would ask if anyone has seen this behavior.

[heatherandlouis]

He sounds a lot like my 4 year old son who was just diagnosed with PDD-NOS.

[scandi]

I agree with PP -- he sounds alot like my boys and they are both diagnosed on the Autism Spectrum --- they are 14 and 10

[AdoptInMe]

Thanks for the replies. I had never thought of Autism. It just seems like he's so busy and active and moving and way too curious and not capable of controlling his impulses (he thinks of something and HAS to do it, like play with a toy or the water or the toilet). I don't see any other signs on the autism spectrum. What would I look for?

For me, it seems like an attention thing more than anything. But are these typical behaviors of ADHD? Or maybe executive functioning? Just something goes off between the direction and the action. I don't know....that's the problem .

[DaisyDay]

"I have gotten info on this board about FAE. Does this sound like a typical effect of FAE?"

It does to me. He sounds very much like my FASD 8 y/o and with your son's known alcohol exposure, I'd be leaning in that direction.

Your best diagnosis, though, is going to come from a behavioral neurologist or someone who is equally trained to recognize symptoms and possible facial features and accurately diagnose your son. We can all speculate all day long, but until you bring in a specialist, speculation is as far as it's going to go.

If it does turn out that your child has FAE or FAS, he's very young and that's to his advantage. Younger is better in getting these kids on the right track. They don't "get better" or outgrow the behavior, they get worse and the gap widens as they get older. They don't respond to typical disciplinary actions like other kids do. Then their self esteem suffers and it's just a cycle that gets worse and worse once they get to school.

You mentioned that he has to touch things to learn. This could be a sensory seeking behavior. These kids often have a lot of sensory issues that need to be addressed, probably with occupational therapy. The impulsiveness also fits the FAS picture.

I'm certainly no expert but I am living the FASD dream right now. My best advice would be to seek out a qualified neurologist and try to nail down what's going on with your little one so you can start to get some help for him and for you!

Best wishes to you and your son.

[Barksum]

Autism, FASD, and other neurologically based problems all have huge overlaps in the symptoms/behaviors the kids display. To pin point what is going on you'd need to get in for that appt you're waiting for. Sadly it is not a simple, quick process. If you know that your Ds was prenatally exposed to alcohol, I'd strongly suspect FASD, but you won't get that dx until you can make the various appts for testing in the medical community.

However, if you want to read up on some helpful resources, look into books for parents of kids with autism and FASD. One book I've found helpful, and have noticed is applicable for other kinds of neurological differences (ADD/HD, autism, etc.) is Trying Differently Rather Than Harder, by Diane Malbin. It is specifically about fetal alcohol, BUT since the behavior and various issues are so similar using some of the suggestions from this book can be helpful for kids with other neuro issues.

For my kids following multi-step instructions at fairly young ages has been a total a non-starter. It just didn't happen for a long (long) time. So giving directions one step at a time, with the kid in view and preferable within arm's reach, was the only way to get things done for years and years. I think I was shocked the first few times I realized that my kiddo was following three step directions without me having to help him along! I felt like breaking out the champagne! LOL

What you describe about the coat, etc., is fairly typical behavior for a kid with FASD. (...or other neurological differences, even.) If you know he's going to go in and start playing when you come in from outside, have him come in with you holding his hand or right by you. Then when you step across the threshold use your cheery voice and say, "Coat off!" and take your coats off together. Then say, "Hang it up!" and do it together (you do yours, he does his) "Boots off!", etc. etc. etc.
I've found my kids do better with one step directions along with a nice model (me!) to help demonstrate what we're doing.

Also, it is VERY common for FASD kids to be able to tell you all the steps, but be unable to do them on their own. We tend to think if someone can tell you what they're supposed to do that they will be able to do it. This isn't always so, especially for many FASD kids. "They can talk the talk, but not walk the walk." Many FASD kids are HIGHLY VERBAL...but can't put their money where their mouth is. There's a glitch, or a disconnect, between those areas in the brain where you put into action what you just said. I haven't found a chart or anything that was as effective as doing things together, right at the moment that it needs to be done. I've even pondered if reminding my one son 40 million times to do something didn't train him to wait for the 40 millionth reminder before he'd do it. So now I try to speak once, followed by action. (And no, this doesn't always happen. I too have to go to the bathroom sometimes, or am in the middle of brushing my teeth, fixing dinner, dealing with another child....)

[AdoptInMe]

Thank you for your replies, DaisyDay and Barksum. It is nice to know that the behaviors that I am seeing may look like something that others have seen before. I am so tired of hearing that he's just a boy. I am so tired of hearing that he is young. I am so tired of hearing that he will outgrow it. My doctor said to me that maybe he won't outgrow it, maybe he will get worse. I am thinking that this is true. He has only gotten worse. He used to be able to sit with a toy and play with it for an hour. I can't even imagine that now.

Thank you for giving me concrete examples of what to do. I guess I keep thinking that he will eventually get it and be able to do what I ask him to do. He can't even do a 1-step direction. He is NOT being defiant. I can tell. And he's not confused. He is just goofing around. Doing what he's not supposed to do. Having fun. With getting his coat off, it's more than just walking in and playing. I have 6 kids in the car. Some are younger than he is and do require help. He can get out of his car seat himself and will run in the back of the car and jump into the trunk (minivan), then I will let him out and he will run outside and run around and ring the doorbell. I will tell him to go inside and he will run around the garage, picking everything up off the ground. Then he will go inside, but he will shut the door in the other kids' faces and LOCK IT!!!!!!! I will yell and he will unlock it, then he will laugh like he's having a ball. I have to deal with the other kids too. When I get everyone in, I will go in and they are all trying to get their stuff put away to some degree and he is dumping a bin of toys on the floor. Not to play with the toys, but to play with the box (he doesn't often play with toys). He will put it on his head and get into it and tip it over. If I walk over to him and tell him to take his shoes off, he will do it, but will get distracted every few seconds. I will stand with him to do it, and it gets done. Don't get me wrong, he gets disciplined in between (treats taken away, books taken away, toys taken away, time-outs, if we're out has to sit in the stroller; and he cries and cries). But it doesn't help.

I think I just need to change my thinking. And it's hard to do, because in the back of my mind I keep thinking that he'll get it one day; that he's fine (his teachers say he is). That he will outgrow it. But he isn't. It is literally all day long. He used to take a 3 hour nap, then go to bed at 7:30 and sleep 11 hours. He needs a lot of sleep. About 6 months ago, he started jumping and bouncing and turning his light on and playing with toys and going and going and going. He cannot settle down to get to sleep anymore. He used to sleep so well. He can take up to 3 hours to fall asleep, then I have to wake him to try to keep him on a schedule. I say this, because I used to get a break when he'd sleep, and he slept well. Not anymore. I drives me insane. I can't punish or discipline him to settle down! I have taken his light out of his room, taken his music out of his room, taken toys out. Nothing works. He bounces and bounces. He had a pacifier to sleep with until age 3 (because he truly needed it), and it's now 3 months later and I wonder if I should give it back!!!!!?????? He did have trouble before, but at least the pacifier settled him down. He just literally cannot settle down now.

Okay, I'll stop now -lol. I am just beyond frustrated and my heart hurts for him. My dh and I are so tired of getting angry at him. And everyone says that parenting kids with FASD means to parent differently. I just don't know what that means. I have a degree in Psychology and Child Development and 20 years experience as a professional nanny. I have taught others effective ways of disciplining their children, but I can't get through to my own child.

[Sueby]

I don't have any suggestions, just what we do at our place. My FS (13) is autistic and has FASD/SAE and the only thing that has saved our sanity over the years is a strict schedule with no clutter around the house to distract him. He gets "overloaded" when there is clutter, trying to grab anything that strikes his fancy and keeping it. He also has time ins with our dog and I find that it really calms him down once he gets wound up. Our dog is a Bernese mtn. dog that you can maul to death with love and he'll stay for hours, so it works really well to calm him down. They're pretty much a 120lb lap dog, so puppy tries his best to get as close (ie on TOP) to his "humans" as possible, which makes FS feel cared for. It makes for a lot of funny pictures let me tell you!

It's ever evolving in our home, we combat one behaviour only to have another rear it's head. It never ends really.

[wcurry66]

Originally Posted by AdoptInMe

Thank you for giving me concrete examples of what to do. I guess I keep thinking that he will eventually get it and be able to do what I ask him to do. He can't even do a 1-step direction. He is NOT being defiant. I can tell. And he's not confused. He is just goofing around.

If its FASD, the "not being able to do a 1-step instruction" means the instruction is too complex. The goofing around can be a distraction from their discomfort of not being able to follow the instruction. Its a simple redirect of your energies

Barksum's book recommendation is a great one. If it is FAS, breaking the instructions into super small ones (smaller than what might even seem reasonable) may help.

good luck!

[AdoptInMe]

Well, I have the school district coming out to observe him on Tuesday. But I feel like they're going to laugh in my face. Because, once again, it's not impacting his development.

I will concentrate on giving easier and more direct instructions. I tried walking him in the house the other day and helping him do what he was supposed to do before the other kids got out, and he did it. The next day, he got mad and told me he wanted to walk in himself. I also tried helping him go to the bathroom, but he had a huge meltdown, saying he wanted to do it himself. Oh well. I will try when I can. He has had a good day today, for some reason. He has been sitting and playing with our "rollercoaster" bead maze thing that he never took interest in before (I put it in the closet and he found it). He has been generally behaving and sitting and playing nicely, which is a first. I also only have a total of 3 kids today and he went to preschool. So, who knows.

I ordered the book and am eagerly awaiting its arrival....

[Barksum]

The book talks about a 'paradigm shift', or a change in your perspective. It's helpful!

Boy, do I hear what you're talking about. I had a professional out to eval one of my kids, and I was trying to get another child out of the car. The evaluator thought for sure, after watching me deal with that child, that THAT child was the one she was there to evaluate. Um, no...it was the OTHER child. The Ds she thought was the one she was to evaluate was the one that people kept telling me was normal, that I just didn't know what a 4 yo boy was like, that it was all ME and Ds was fine...sound familiar?? LOL I can't tell you how comforting it was to have someone else SEE what I saw. I was so relieved to have outside corroboration that it wasn't just ME.

As to the running around like a wild child, that could have to do with a lack of impulse control. Mine would flip switches. He couldn't not flip a switch. We had to be aware of where he was and make sure that if there were switches in a room that we kept him from them. It was a rough ride until he did finally master being able to be in a room with a switch and not touch it. It took a couple of years. Longer than the average child, but he did get to that point. (There were other things he couldn't NOT do, too, but the switch flipping is one that I can remember right now.)

The thing for me was that even though he was 4 years old I had to THINK like he was much younger, and still be within arm's reach of him. Parent as though he were a toddler. Not an easy thing to do! He wasn't my only child, there were times I couldn't seem to be in three places at once and he'd get into things or do stuff...whew! Very taxing!

Hang in there and keep working to find resources. Try not to be discouraged as you work to find ways to help your Ds. ((((hugs)))

[alys1]

OK, with you describing this big change today, I'm wondering about allergies. Especially to food dyes, chemicals, possibly to certain foods. If a person has allergies, and their "load" of items they're allergic to is lower one day, it can make a huge difference. Even if all FAE etc. exist, this could still be an influence.

Visit The Feingold Diet Program for ADHD

Read especially the pages called "Success Stories", which in fact describe children who couldn't control themselves... until their diets were changed. Read the ones towards the foot of list, "4-yo boy could not calm down" and "4-yr old girl",
Testimonials - Success on the Feingold Program

I'm sensitive to these myself, some of us are. Lack of ability to concentrate is a typical symptom. From say, Cheetos (food dye). Had one foster son, I could tell if they'd fed him a snack with food dye before he left daycare: he could not quit moving. He was compelled to move, vs just moving because things interested him.

Just a thought. If it's there, making changes in diet, toothpaste, soap, etc. will make a huge difference for the child.

[AdoptInMe]

Thanks, Barksum. The switch thing is my ds. And doors. He has to open a shut door and close an open door/gate, whatever. My husband thinks OCD, because of the opening doors and stuff, but it's not in any way repetitive, and he's having a blast, laughing hysterically! And he's doing what he thinks he's supposed to be doing (why wouldn't you shut an open door; um, maybe because I have a bit basket in my hands and need to get through the door ). But I get so upset that he does this all day long. We have locks on all the doors because of him. And gates everywhere (he can open them, but it does slow him). I just keep thinking that he's too old to play with light switches. I would expect it out of a 1.5 year old. Not a 3.5 year old. I think that's MY problem. I expect him to act his age, and I have to change MY expectations.

And I agree that it's an impulse thing. He has to do it. He can't stop himself, and that's the biggest indicator that there's a problem for me. His 2.5-year-old class teachers are a bit confused. He is now 3 years 3 months. They keep thinking that he's a toddler, and they expect toddler behaviors from him (such a parallel play, which he should still do, but he should be starting associative play and at least starting to play with the kids). They don't think that he should be able to control his impulses! I mean, it's all a matter of degree. And his classroom is so contained and filled with sensory activities that he loves and can spend hours doing, and therefore, does not get in as much trouble.

So, yes, confirmation that there is something wrong and how to fix it would be great. But I don't know about this woman coming on Tuesday. We'll see. The evaluators with EI who saw my dd did confirm that she was sensory seeking and needed the help of an OT, but they would not help because she was so advanced in every area. This may be the same thing. I still remember when they came to a storytime to evaluate her. She was a calm little angel who didn't display any sensory seeking behaviors, I was so upset. But she did in her full evaluation. And at the OT office. So, wish me luck in Tuesday. I think the biggest key for this is going to be the genetic pediatrician. She is the FASD specialist for the state. She will know! I just don't trust anyone else to know at this point. My husband just found a job that he starts on Monday, but he has to wait 3 months for insurance to kick in. I am calling to see how much an initial appointment is, just to get one down and get some information to start.

alys1, I have heard about the allergy thing, but I'm just not so sure with him. I will keep it in mind, though.