Looking for a little advice - SPD, ADHD, Anxiety, other issues.... - Mothering Forums

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Old 09-10-2013, 11:55 AM - Thread Starter
 
a.n.d.r.e.a..v's Avatar
 
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My five year old son, A, is a very smart, loving and sweet little guy, but we are struggling since school started.  He started kindergarten almost a month ago now, and transition has been HARD!

 

He has been diagnosed with Sensory Processing Disorder, ADHD, Anxiety Disorder NOS, low muscle tone, and also has Epilepsy, multiple lesions in his brain's white matter, and he also has asthma.  The asthma, thankfully, has been the least of our issues.  He has a chronic cough type of asthma, which is wonderfully controlled with Qvar. 

 

He has been evaluated by the JFK Center for Autism and Disabilities in Denver, CO, and they gave us a wonderful assessment and treatment objectives.  His IQ testing was absolutely off the charts, he excelled in all the testing in terms of intelligence.  His comprehension scores are exceptional, but it feels like he just doesn't "get it" when it comes to his behavior.

 

Behaviorally, we are struggling greatly.  He refuses to listen, and even though he can repeat back to me in his own words what I have told him, and he intellectually gets it, but doesn't make it into real world sense.  For example, he has a chewing habit, part of the SPD. I purchase for him a myriad of different chew "toys" like stretch bracelets, pencil toppers, hand held chew sticks, etc.  He loves them, and uses them, but when I tell him not to put something else into his mouth, he repeatedly does it.  It seems like he does it defiantly, just to get a rise out of me.  On Sunday, I caught him three separate times putting small rubber lego wheels into his mouth and chewing them like gum.  We talked about the dangers, he promised he would stop, and then, bam, he's back at it.  I made him throw them away, and he found some more, and was back at it less than an hour later.

 

He has become exceptionally whiny, complains and back talks, and is overly dramatic about every.darn.thing.  No amount of punishment/consequence, discussion, redirection, anything, is working.  He always promises that he is going to never whine again, never going to be naughty again, yada yada, but it is just words and he doesn't mean it.  He often tells me that he can't help it, his "brain makes him want to be naughty."

 

We have a treatment plan to set up with his school, including an IEP with accommodations made for occupational, physical, cognitive behavioral and speech therapies, but the school has informed me that while they are reviewing all of his records and the recommendations from JFK, they won't have an IEP in place, or therapies started, until after Thanksgiving.  I honestly don't know if we are going to make it that far without mama completely losing her head.  I know that the therapies are going to be greatly beneficial, but until then, yikes!

 

I could really use some advice on some things we can do at home to tame the energy, the whining, and some sort of technique that would get through to him about behavior and consequence.  He even chooses his own punishment for things, and that doesn't work.  No TV for a week?  Doesn't even phase him.  

 

Anyone out there with some magic advice?  :)

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Old 09-10-2013, 06:57 PM
 
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Positive reinforcement might help with decreasing behaviors. Do a little research and create a token chart/reward system. Also look into Cognitive-Behavioral Therapy and Applied Behavior Analysis.

 

Hope this helps a little!

 

Hang in there...it can take a really long time to get services started.

 

The squeaky wheel gets the oil, though!

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Old 09-11-2013, 09:55 AM
 
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I don't have any magic but I do have a big hug! :grouphug

 

You probably are already familiar with all of my suggestions but I'll throw them out there anyway. When you see him chewing on the toy wheels can you give him a piece of gum? I know he has the other chew therapy items but gum has taste so he can get an added input. It also fits in the mouth like the wheels.

 

Have you guys done the How does my engine run program? My younger SPD son can ask for certain things that calm him down. One of his favorites is to lay on the bed and hold onto a bed post while I pull him by both legs right above the ankle. Do you have a ball chair, swing, trampoline or any other sensory things for him. It really just sounds like he needs help figuring out what to do to calm down. Punishment and talking about it  never worked for us. The only thing that worked was to redirect to a sensory activity. My older SPD son was harder because he didn't know what he needed or how to ask for it so that took a lot more work to figure it out. He is 13 now and is 5'8" and 120lbs. Due to his size I can't give him the input he needs anymore - he is too big for the swings and stuff we have, he often needs passive input BUT we figured out if he is having a really hard time we hop in the car get on the highway with the windows down and the music blasting - works like a charm but he still doesn't always know to ask for it. Sometimes I have to suggest it.


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Old 09-11-2013, 12:06 PM
 
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disclaimer: I'm trying not to write a novel here so if I sound short or terse I don't mean to I am just trying to be as brief as I can. :)

 

I think the first thing you should do is stop judging his behaviours as "naughty" or "defiant" or "trying to get a rise out of you". He is five. And has has many challenges that you probably can't even begin to understand. Trust that your child is acting as well as he can in that moment. The change in attitude is the first step to ending the feeling that you are constantly battling with your son.

 

Second, forget the idea of punishment. It is obviously not working, which is more evidence that your child - who again, is FIVE - cannot control his behaviours despite the threats of losing TV time, etc. I can tell you from my own experience with my autistic child, who has many behavioural and sensory issues, that it is a waste of your time and only makes everything worse by adding to their anxiety. Your job is to make the world a more gentle, emotionally safe place for these kids who are facing struggles. Not to make life harder by expecting him to do that which he cannot do and imposing punishments in a world that already punishes him daily for being who he is (sensory stuff, etc). 

 

For the chewing, I would just accept that your kid is highly oral and keep small objects out of his environment as best as you can. When he does put something in his mouth, gently say "that's not for chewing" and offer him one of his acceptable chew toys. You may have to do this for years. But if you do this every time he will eventually internalize that message and, when he is developmentally able to control that impulse, he will stop. Meanwhile your job is to keep him safe and not expect that he can do it himself. 

 

Don't ask him to name his punishment, or make ridiculous promises like never whining or being naughty. That puts immense pressure on a child and is totally unrealistic. Whining is a normal behaviour for children and they can be coached to use better ways of communicating, but they are very reactive creatures and are expressing what they are feeling  as best as they can. A kid who is acting out has a need that needs to be filled. He likely is unaware of what that need is, and/or cannot put it into words. Is he hungry, tired? Is the environment too much for him? Is he overstimulated or overwhelmed? School is exhausting for some kids, is he acting out b/c he has had to keep it inside all day in Kindergarten? 

 

Treat behaviour as a cry for help and it will change the way you see it, the way it affects you, and the way you deal with it. Trust me, I have BTDT.

 

I would HIGHLY recommend you read through Dr. Laura Markham's website. She is the author of Positive Parenting and also a guest on MDC's Ask the Experts. Her advice on discipline is excellent and definitely applicable to SN children. 

 

HTH! Gotta go feed the kiddos! :)


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Old 09-18-2013, 12:07 AM
 
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First of all Piglet68 you rock!! You are amazing! I needed to read your post tonight. I have an 8-1/2 year old daughter who is absolutely beautiful!! Chatty, spicy and cute! She is very strong willed and knows what she wants and when she wants it. Oh by the way she was diagnosed with ADD (not the ADHD part of it) in Kindergarten.  She currently takes 5mg of Focalin XR in the morning before school to help her focus and concentrate. She also takes 2 mg. of Intuniv at night before bedtime. She occasionally has huge fits/melt downs. She wakes up crabby and very moody. If she wakes up and her twin brother is dressed already she immediately is upset and is complaining about anything and everything. What we have learned to do is change the subject or say something funny or even bring up something like asking her what I should cook for dinner. Tonight she wanted to play a computer game on a site the school recommended however I wanted her to take 2 quick tests on her multiplication table x2. It would take about 1-2 minutes max each test. Well she did well on the first one then when it was time to take the 2nd one she gave up in the middle of it. Not sure if the stress of taking the test and being timed might have triggered her melt down but she had a HUGE fit. She yelled, threw her pencil at ME, stomped....This behavior and crying doesn't get them what they want. Not in this household. So letting her know that just irritated her even more. She screamed and cried and there was just no calming her down. She was stuck on wanting to do the computer game or take the test over. Neither was going to happen and now it was bedtime so I told her we could try it all over tomorrow. Again, there was no way to calm her down. It's almost like trying to argue or talk sense to a drunk, you just can't. (That was the only thing I could think of giving as an example). So we stuck on it being bed time and she wouldn't calm down. The level of anger was just off the charts. We have to remind ourselves that she can't control her anger. It is so difficult. I stay calm for so long then I raise my voice and let her know enough is enough. I think that kind of lets her know she better snap out of it. My husband hates when I do that but I think it works. Well it makes me feel a tiny bit better because I just want to scream just as much as she has been.

Is there anything you recommend?  We had pasta for dinner. I'm wondering IF a gluten free diet would help this type of behavior. I am starting a food log/behavior log to see if I notice a difference.

Oh she has been tested for Autism and Asperger's and both were ruled out. She gets night terrors occasionally and I started lavender spray on her pillow and a 20 min massage before bed. That seems to help.  Hope to hear your recommendations.

Andrea V. Hang in there, try try try to accept that there are things we can't change about our child. My daughter does similar things like do things we just asked her not to do or not do things we have repeatedly asked her to do. Some kids do get real forgetful and it's almost as if they were never told something. It's irritating and very frustrating but always know that things could be worse. Even when you think they can't be worse, they really can.

Thanks ladies.

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Old 09-18-2013, 08:23 AM
 
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Quote:
Originally Posted by A.n.d.r.e.a..V View Post
 

My five year old son, A, is a very smart, loving and sweet little guy, but we are struggling since school started.  He started kindergarten almost a month ago now, and transition has been HARD!

 

He has been diagnosed with Sensory Processing Disorder, ADHD, Anxiety Disorder NOS, low muscle tone, and also has Epilepsy, multiple lesions in his brain's white matter, and he also has asthma.  The asthma, thankfully, has been the least of our issues.  He has a chronic cough type of asthma, which is wonderfully controlled with Qvar. 

 

He has been evaluated by the JFK Center for Autism and Disabilities in Denver, CO, and they gave us a wonderful assessment and treatment objectives.  His IQ testing was absolutely off the charts, he excelled in all the testing in terms of intelligence.  His comprehension scores are exceptional, but it feels like he just doesn't "get it" when it comes to his behavior.

 

Behaviorally, we are struggling greatly.  He refuses to listen, and even though he can repeat back to me in his own words what I have told him, and he intellectually gets it, but doesn't make it into real world sense.  For example, he has a chewing habit, part of the SPD. I purchase for him a myriad of different chew "toys" like stretch bracelets, pencil toppers, hand held chew sticks, etc.  He loves them, and uses them, but when I tell him not to put something else into his mouth, he repeatedly does it.  It seems like he does it defiantly, just to get a rise out of me.  On Sunday, I caught him three separate times putting small rubber lego wheels into his mouth and chewing them like gum.  We talked about the dangers, he promised he would stop, and then, bam, he's back at it.  I made him throw them away, and he found some more, and was back at it less than an hour later.

 

He has become exceptionally whiny, complains and back talks, and is overly dramatic about every.darn.thing.  No amount of punishment/consequence, discussion, redirection, anything, is working.  He always promises that he is going to never whine again, never going to be naughty again, yada yada, but it is just words and he doesn't mean it.  He often tells me that he can't help it, his "brain makes him want to be naughty."

 

We have a treatment plan to set up with his school, including an IEP with accommodations made for occupational, physical, cognitive behavioral and speech therapies, but the school has informed me that while they are reviewing all of his records and the recommendations from JFK, they won't have an IEP in place, or therapies started, until after Thanksgiving.  I honestly don't know if we are going to make it that far without mama completely losing her head.  I know that the therapies are going to be greatly beneficial, but until then, yikes!

 

I could really use some advice on some things we can do at home to tame the energy, the whining, and some sort of technique that would get through to him about behavior and consequence.  He even chooses his own punishment for things, and that doesn't work.  No TV for a week?  Doesn't even phase him.  

 

Anyone out there with some magic advice?  :)

You might consider talking to your state's parent advocate organization for special education. Your school should be able to provide you with their contact information.  They help with IEP's; you have a 60 day window for the IEP to be developed by the school/team and those 60 days start with you putting a request for evaluation in writing or your signing a form from the school requesting to evaluate your child.  Wrightslaw.com will have infomation about the process, but talking to a parent advocate can help clarify the system.  

 

I think Piglett's advice is very important.  Kids with special needs need flexibility in parenting because your child processes and learns different.  With the mouthing, it can also be an issue with adhd.  We looked into, but never got chewelry for my ds.  He has somewhat outgrown this habit around 11 years old, but we still see him pulling legos apart with his teeth :( Some aspects of mouthing could also be seizure related- has he ever done it during the eeg?   In fact, many odd behaviors or even what comes off as defiance can be seizures.  My ds has been in trouble more than once at school for perceived behavior problems that were likely partial seizures and post-ictal confusion.  Kids with epilepsy can have lower self esteem, easier targets for bullying, anxiety over seizures and fear of having them,  problems processing information (speed),  and difficulty with memory (storing and retrieving); then add all the other dx you mention... I would start whining, too.   

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