New Here, Overwrought

EB67

New Member
Hi Marge and many thanks. It seems as if we have a lot in common...

>>A suggestion - go to http://www.childbrain.com and look for their online Pervasive Developmental Disorder (PDD) test. This is NOT diagnostic, you can't use it that way, but it can give you some idea of what we mean.

Thanks for the link. Interesting. I took the "diagnosttic" and scored 58 for Seb (Mild Pervasive Developmental Disorder (PDD)). I will look further into this.

>>Despite his autism label, he is highly sociable and enjoys being around other people. A thought for you - difficult child 3's autism means he is often socially inappropriate in a way I suspect your son might be too - he does not distinguish between adult or child, in his interactions.

I always (incorrectly) assumed that autistic children were not sociable. Like your son, Seb is very outgoing. And also like yours, he doesn't distinguish between adults or children in interactions and he often says very over the top things. He is especially outspoken in matters of religion and politics which are notoriously off limits.

Case in point:

We were at a family funeral last week. At a reception after the cemetary Seb broke through a quiet pause in conversation and said (to a group of older relatives): "So, I have this feeling loooking at you as if any number of you might have voted for George Bush. But did you not realize that the man is a big fat liar? Did you not realize that he had no justification for this so-called war on terror" (he went ON and ON...) People don't know how to react when he gets going like that.

Recently he make a provocative comment to the hairdresser who was trimming his (long shaggy hair). He was quite agitated because I refused to allow him to get a mohawk. He was staring at the cross around the hairdresser's neck and said: "Did you know that no intelligent people believe in God".

Hi. He's 7.

Seb will argue about anything. Just before he exploded at me when he asked me his blood type. I answered A+ and he flew off the handle because his blood type of choice is A-.

A digression...

Interesting anecdote about your son and the baby.

>>difficult child 3 was an early reader. We now know this is called hyperlexia, especially where their understanding is not as good as their reading ability. And especially when coupled with autism-like traits. difficult child 3 was typing the alphabet (upper and lower case) and numbers, when he turned 2. He was reading sheet music. He was playing piano. And he was non-verbal. He sure can talk now! And very clearly and fluently, too.

Interesting. I have an early memory of Seb at around 18 months. We were on the subway at Canal Street Station-- he looked out of the window and said: 'C-A-N-A-L". At 2 he could identify letters and numbers, he read books at 3 and change and sheet music at 4. Now at 7 he reads as an adult. He was always very verbal, but not at all able to write. He has dysgraphia and can barely print, has great difficulty making representational pictures andis very avoidant of all writing assigments at school.

I wonder about hyperlexia as I know that there is a disconnect between ability to read and comprehension. At what age? Seb's comprehension is good, though at an earier age it was not.

>>That book really helps you deal positively with the oppositionality. It's not a cure, but it makes a big difference.

I so look forward to reading it. I need some positive tools because I've become and ogre.

And welcome.

Thanks!
Marg [/quote]
 

EB67

New Member
I strongly recommend a neuropsychologist for the older child and a Developmental Pediatrician for the younger one.

Is there a great difference between a neuropsychologist and a Behavioral Neurologist? Seb sees the latter. I'm not familiar with Developmental Pediatrics-- I'll look into this.

Is the youngest in early education, at least getting speech?

Miles is in preschool and they have made classroom modifications for him like visual cues. He was referred to the Preschool Special Education Committee and denied services; something I found STAGGERING as the evaluation stressed that his pragmatic language needed support.

Miles often uses tangential or associative language. For example, in testing the evaluator said: "The sky is blue, grass is____?". Miles said: "Elephant". When asked about having a penguin as a pet his reply was: 'santa Claus". His langauge can be very abstract.

Other times he answers in association. When asked what his birthday is he will say "Batman" because at his last party he had a Batman birthday cake. It's heartbreaking.

We are in the process of finding a private speech pathologist to help him though I think he has made progress since the last evaluation.

In the case of these boys, I would not go to a Psychiatrist or therapist first--they need to see if there are neurological problems beyond ADHD (although NeuroPsychs are great at spotting just ADHD too).

Interesting. I do think Seb needs to talk to someone about his feelings as the behavioral neurologist doesn't really do much of that.


THey run intensive tests--my son had twelve hours of testing. I also would not put this type of behavior in the hands of a pediatrician.

Oh yeah, the pediatrician didn't see any of the issues. But 12 hours of tests?? Yikes. What did they do???
 
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EB67

New Member
Also - high IQ tends to gallop in families. Siblings rarely vary more than 10 IQ points from each other.

I have read this fact. Oddly Miles, Seb's 3 year old brother was given full psychiatric testing and a WISC-C and scored in the low-average range. But I think his low score may have been because the test was language based.

My husband almost hit the test ceiling or so he claims. I have never been tested (that I know of) but at the risk of sounding self depracating, I do not suspect that Mensa is looking for me.

Look back through your families, you and their father. Can you recognise any odd, gifted or simply 'different' members of the family?

That's the scary part. The gene pool is quite muddy. My mother is a bi-polar (artist) with repeat suicide attempts and a personality disorder, My father is exceedingly intelligent yet self destructive. My maternal grandfather was a suicide. On my husbands side... his mother was also chronically depressed and suicidal, father was brilliant (literally a rocket scientist).

My husband and I are reasonably sane though we grew up in extreme families. I live in fear of the crazy genes.
 

smallworld

Moderator
Hi Ella, my kids see a behavioral neurologist for migraines, and he's as versed in psychiatric medications as their psychiatrists (my kids have mood issues, not autistic spectrum disorders). He was the one who recommended that they undergo MRIs and EEGs to rule out seizure disorders. For medication management and psychotherapy, my kids see psychiatrists weekly. They have also undergone intensive testing by a neuropsychologist, who is a psychologist with special training in how the brain functions. As MWM mentioned, neuropsychologists do intensive testing (8 hours in my daughter's case, 10 hours in my son's case) to assess cognitive and psychological functioning. Tests can include evaluating IQ (like the WISC-IV), achievement (like Woodcock-Johnson-III), executive function, motor integration, personality/psychological, etc. Has Seb had any private testing? If not, I'm sure the behavioral neurologist can recommend a good neuropsychologist.

What did the behavioral neurologist say at your appointment today?
 

SRL

Active Member
Hyperlexic children vary widely in their comprehension skills. Obviously when they are preschoolers who can read anything put before them there is a huge discrepancy. We'd expect a 3 year old to know what B-A-L-L is but not to comprehend the word P-S-Y-C-H-I-A-T-R-Y even if they could pronounce it flawlessly. As they progress, Hyperlexic children do have higher frequencies of reading comphension problems but there are children whose comprehension skills are very good. There are also those who struggle with comprehension when it comes to areas they might be weak in such as abstract thought or social interactions. There is no hard and fast rule on this.


A neuropsychologist is a psychologist with a phD, which consists of coursework and clinical experience specifically in diagnosing issues in the neurological, mental health, and learning disability realm. They aren't medical doctors thus can't prescribe medications.

A developmental pediatrician is an MD, a pediatrician who has extra coursework and clinical training in childhood developmental and behavioral issues.

A behavioral neurologist trains first as an MD, then as a neurologist, and then apparently gets additional training in pediatric behavioral issues.

I just found this link--it probably explains the differences better.
https://web.archive.org/web/2010060...in.northwestern.edu/clinical/definitions.html

What was the outcome of today's appointment with his doctor?
 

EB67

New Member
>>His father is blind to the fact he has any problem at all.

What the hell is it with these fathers? My husband used to rooll his eyes at me and blow me off when I suggested that there was something OFf with Seb. Now that he has heard it from the school and medical professionals he is more accepting. But each time I introduce a new concern it gets shot down. Not his perfect child...


>>I have gotten upto as many as 5 calls from school a day. I quit.

I say that we have frequent flyer points at the pricipal's office.

>>I recently just gave up. I cannot take the disrespect he shows me. the yelling, the name calling. Not violent thank god.

I really understand where you are coming from. I am still in the calm before the storm age. Isn't age 7 regarded as The Age of Reason?? I see where you are with your son and I feel I am but a few years behind. I know how emotionally exhausting it is to fight for someone who shows you no respect and won't accept your help.

>>I am babbling, but the point I want to stress, is if the option of advancing a grade is mentioned please think deeply about it.

As it stands, Seb is the youngest in his class as his birthday is just before the cut off and many people in our district hold back. It's a disaster. I wish I had held him because he wasn't socially or emotionally ready. He doesn't even see that the kids think he's off.

>>We would never have done it if we would of known how hard it is for him with peers who are so much more emotionally and physically mature. They simply won't put up with him. Breaks my heart, but true.

Same boat here.

>>If he settles down, and applies himself, or atleast does the work, he will enter his senior year of High school at age 16. it is very hard on us, and it is extremely hard on him socially.

I begged my husband to consider delaying his start of kindergarten for this reason. "Oh but he's so intelligent, he'll be bored" they all said. Now he's just out of sync, unfocused and bored and immature to boot. He started kindergarten at 4 and he'll be a senior at 16. I wish we could retain him but there is no good way to do it now.
 

EB67

New Member
>>What did the behavioral neurologist say at your appointment today?

As luck would have it, we were under tornado watch. A MASSIVE storm came a knocked a power line across my driveway rendering us housebound (but luckily with power somehow). I rescheduled for Monday.

Seb had a RIST and a WISC IV through our school district in addition to psychiatric and neurological evaluations. I see that there is more to be investigated. Of course these tests, these doctors are never covered by insurance. Grrr.
 

SRL

Active Member
Good. The reschedule will buy you some time to do some more homework.

Wrong Planet is the probably the biggest Asperger's site online today. Management of the site as well as most of the forum participants are individuals with AS so it has a different twist to it than than those with a clinical or parental flavor:
http://www.wrongplanet.net/

I had one of those kids that looked like Einstein Jr. when he was 4 and 5. We were in the midst of the evaluation process when kindergarten was supposed to start for him and given that and social/emotional delays I opted to hold him back. I took a lot of flak for it and got into a heated argument with one of the professionals doing the assessment. He was pretty bored early on but it took so much more for him to maintain in a classroom setting than a neurotypical kid that I was glad to give him that academic advantage. As he's gotten older his interests have become more in line with his peers and he's a solid student, not a brilliant student.

Has the school set him up with an Alphasmart keyboard or offered handwriting in Occupational Therapist (OT) if he's resisting writing tasks?

You may want to push for an IEP instead of a 504 plan and get social skills training built into his schedule. This is done by the Speech Language Pathologist (SLP)'s, social workers, and/or classroom teachers and can be very helpful if done at early ages.
 

SRL

Active Member
EB67 What the hell is it with these fathers? My husband used to rooll his eyes at me and blow me off when I suggested that there was something OFf with Seb. Now that he has heard it from the school and medical professionals he is more accepting. But each time I introduce a new concern it gets shot down. Not his perfect child... [/quote said:
Well, I like to think of it as Gene Pool Pride.
 

Martie

Moderator
Ella,

Welcome to our world. Glad you found us--sorry you needed to.

I can relate to the stream of consiousness mouth on Seb. Ex-difficult child would at one time say anything that popped into his highly active brain.

Gifted kids are extra hard to raise when they are both gifted AND difficult child. been there done that...I wish I had found this site when ex-difficult child was 7. Ross Greene's book works best for kids who are intelligent and verbal. This book was made for you...it change things a LOT in our house.

I think you are on-target worrying about your gene pool. We used to have a member who said tongue-in-cheek, "our gene pool could use a little chlorine." There is nothing you can do about the genes--Seb got them or he didn't (looks like he did.) However, there is much you can do to manage what he got--and make it better for him, and you.

Based on your responses and how fast you process, I bet Mensa is looking for you.

Welcome...

Martie
 

Marguerite

Active Member
Ella, you just said, "Something tells me that Seb doesn't fit the model but I am probably generalizing and unable to say so. He just seems very socially adroit even though he fails to see the difference between himself and adults (and therefore has trouble respecting authority)."

This is my difficult child 3 exactly! And he's got an autism diagnosis because his history also includes language delay. He's darn well caught up now! But the autism diagnosis still stands, because the HISTORY here is what counts. He's got ADHD as well, at least as far as he functions. It's what he's been diagnosed with.

difficult child 3 has a good friend who is 8, who also has a diagnosis of ADHD + high-functioning autism. His friend's autism is less severe but the ADHD component definitely causes problems. Friend also doesn't like taking medications, compounded by his mother (ageing hippie) not liking the idea of medicating her child. However, she can see the benefits and it does make a big difference to his behaviour. Young Friend was watching one of our sensationalist current affairs programs which was taking about the dangers of medicating kids with ADHD, as well as how these kids will turn into criminals (idiot TV show!) and so now he's very reluctant to take his medications. He's also getting quite bad rebound (a problem we had with difficult child 1, on ritalin). Some kids get rebound on ritalin, some on dex, a lot on neither, maybe some on both.

difficult child 1 went through a phase of skipping his medications, or drinking caffeinated drinks (which for him would short-circuit his medications). He couldn't see any problem with the resultant behaviour, although he did admit that he was having trouble with OTHER people being mean and unreasonable. We finally got through to him (after a couple of particularly violent episodes, one of which had him doing community service for a week) that if he took his medications properly and didn't interfere with it, then other people would seem to be more reasonable. But we did have to sit him down (with his doctor) and sort it out with him.

You have a very bright child. He has a very negative opinion of having a diagnosis of ADHD (or anything, probably). You need to get into his head and find out why. REALLY talk to him, sit with him (cookies and milk time, or bedtime snuggle if he will do this) and talk about it, person to person (not parent to child - he doesn't understand that anyway). You will find that he is learning how to treat other people, by how other people treat him. So even if he is rude to you, do not shout back at him or be rude or sarcastic with him. SHOW him how you want to be treated by him. If I have a run-in with difficult child 3, I fist mentally assess, is he shouting because he's anxious or stressed? If so, I wait until we've dealt with that and he's got the anxiety under control. THEN (depending on how he's responding now) I might say, "I really don't like it when you speak to me in that tone, it makes me sad." or words to that effect. Generally these days I get a spontaneous apology as he's calming down. He still shouts, because he still gets anxious or frustrated, but he does get himself under control much more these days.

Back to the heart-to-heart with him: you need to get right under his skin. How does he feel? Why does a diagnosis of ADHD upset him? What does he think it means? Does he see people with ADHD as imperfect, or less smart? Is there a kid he knows with ADHD, who is in his opinion defective, dumb, flawed, and he is scared of being like that person? Because there are a LOT of people in the world who would have qualified for a diagnosis of ADHD, Asperger's or similar, who have been great achievers in their field. Ask him who his heroes are. Find flaws in these heroes that they have overcome. There will be some; there always are. For example, Arnold Schwarzenegger - Austrian-born, didn't speak English well when he first came to the US. Took steroids etc and now says it was a dumb thing to do. But he has managed to learn English well enough to act in some really good movies, married a Kennedy and has become Governor of California. He's also a very, very smart guy - he just has played some thick characters at times (such as Conan). He was a bit TOO good at playing a not-bright character, people thought he was not smart either. Boy, were they wrong!

Basically, handle it that way - you can 'sell' anybody to him, especially if he already idolises them. If you haven't got the background information, then research it together online. "Let's look up your hero, see what we can find out about their life."
difficult child 3's hero is BF1, easy child's partner. BF1 has a brilliant mind, is a computer whiz but had a very rough early start in life. He could have got stuck where he started, never being able to achieve anything due to extreme poverty and a lot of hardship, but he worked his way through the system until he was able to score a place at uni. He's now finished uni in the course he loves (IT) and is working with computers and doing brilliantly.

I suspect your difficult child's heroes will be anybody who is achieving well (or did in their lifetime) who is highly intelligent. Einstein. The Curies. Rutherford. Isaac Newton. Bill Gates. Galileo. If you dig, you can find the problems they had to cope with. Including ADHD at least, in some cases. Stephen Hawking (say no more).

The other thing that might help is the explanation I used on difficult child 3, to explain why he is different. He was about 8 when he began to notice that he couldn't fit in, no matter how hard he tried. Denial simply wouldn't have been possible for him after that, but his failure to recognise it earlier wasn't denial, it was the degree of his autism that had him simply unaware at tat level of social interaction. But at 8, he began to get angry at the world for being such a challenge. That's when we were finally able to tell him that he is autistic, and what that means. I mentioned before, we explained it as different computer operating systems (since difficult child 3 was using a computer before 12 months of age, and had been familiar with both Mac and easy child by the age of 2).

The analogy is also valid for ADHD.

Here goes:
There are two main types of computer - Mac, and easy child. There are a lot of sub-groups of easy child, but basically they tend to work one way, Macs work another. But to the person typing a word processing document, they don't need to understand the fine detail of the different things about each type of computer. All the typist is doing, is preparing a document. They want it to look nice. They finish and send it to the printer. And when it comes off the printer - it can't be distinguished whether it came from a Mac, or a easy child. The computers were much the same to use, the printout looks identical. But the programming for each type of computer is very different. The operating systems needed for a MAC will not work on a easy child. But for each type of computer, that operating system makes it possible for it to interact and perform to the best of its ability.
Some people have Mac brains and need Mac operating systems. others have easy child brains and need easy child operating systems. The education system generally goes only one way, but for those whose brains are wired differently, they need to find their own way of operating, so they can then interface with the mainstream method of education (or interaction in general).
Depending on what task you need to do, a easy child can be better than a Mac, or vice versa. In the same way, some people have talents that the other group has to struggle with. And vice versa.
For example, those with a really great memory can recall lots of information. But other people can USE that information and make some really interesting connections. Different brains work in different ways. And if we didn't have these differences, humanity would have missed out on some amazing people who were able to produce marvellous advances in knowledge and technology.

At no stage do you say which group has Mac brains or which have easy child brains. You don't identify difficult child as belonging to any specific group; just that he belongs to a different group to a lot of others, which can mean some difficulties with other people (especially teachers, who are mainly dealing with one type of leaner, and he is a different type) but it can also mean that when his brain does go off and do its own thing, he will produce some wonderful outcomes all on his own. He has amazing abilities and knowledge already, at 7 - what more can he achieve as he grows, matures and learns to adapt? Because adapt he will. He's already doing it, they can't hep it.
That adaptation will help his unusual brain find a 'key' to access the learning developed for the other type of brain. it's harder for him and frustrating, but some degree of interface will be needed. However, if he can accept his differences, value them and work with them (including taking his medications, which give his brain a chance to focus as deeply and intently as his brain can do at its best, without the distractibility due to the ADHD) then he will find that he can fit the entire galaxy into one little head. As and when he chooses.

This can be scary for a little kid, but the medications make it easier. However, that also make it exciting as even he doesn't know just how much that brain of his can do, until he gives it a chance by using medications to cut back on the distractibility. He doesn't have to take medications all the time; if he feels they're stifling the way he thinks then maybe he could not take them on weekends. But THE SCHOOL (and after them, society) is simply not set up to work with his way of thinking, so he needs to make this adaptation.

Another way to explain it - we have lots of switches in our brains. Some are 'on' switches, some are 'off' switches. Sometimes we use an 'off' switch to throw in a circuit to help us concentrate. But in ADHD, one particular 'off' switch isn't working properly, it gets switched back and forth by other sensory stimuli when it should stay off. The ADHD medications are supposed to work by keeping that 'off' switch closed, when WE want it closed. Even on medications, if you want that switch on, then you can switch it on. For example, when you want to just play and have fun. But when you need to concentrate, the medications help by holding that switch shut as long as you want it shut (or until the medications wear off).

If he says he feels tired, a bit emotional, angry or confused towards the end of the day when he's taken medications, consider that he may be objecting due to rebound. He's a bright kid, he may have a bright reason which he may not have been able to put into words (it can happen, even with the most articulate kid). Then you say to him, "I think I know what the problem might be; you need to tell this to the doctor and see if he can help find a better way."
Empower him appropriately, to take charge of his own health. If he's not happy, he needs to learn to say so appropriately instead of just refusing. But these kids WILL get stubborn and refuse, if they feel they're not being heard. You can't use the "because I said so, that's why!" on these kids. Because they will use it back to you later on, and then wonder why it gets an angry response.

In a pinch, ADHD can be managed without medications. Personally, I hate the idea, but I've known people who had no choice. They DO learn to adapt. But it's very hard on them, and those around them.

My personal view - you may need to consider home schooling. A really bright child often learns in a different way and needs access to different ways of learning, so they can do their best by choosing their own path. An example I give - difficult child 3. He was doing poorly in mainstream, although he always got high marks in tests (no distraction when they were given). He was never given extension in his best subject (maths) because he never finished the main class work set (because he was bored by it; he already knew it and didn't like his time wasted). But other topics he simply didn't learn at all. Such as Geography. He missed more and more school due to 'illness' and I would insist he do schoolwork at home, even when unwell. Because I was running out of work for him to do, and because I knew he had no clue about other countries (or even this one) I bought a copy of "Where in the World is Carmen Sandiego?" I'd have got him something else if I could have, but it was a start. He played it over and over and because it presented Geography in such a holistic way, he now has a complete picture of the globe; the countries in it' where they are with respect to each other; special features about those countries and so on. Now, as he learns more from watching the news or hearing other information, he can slot the new information into his frame of reference. But school didn't give him that frame of reference - we did. Or more accurately, he did, once given access to a mode of learning that was very different.

Socially, difficult child 3 is doing a lot better studying at home. When I go shopping he comes too and interacts appropriately with shopkeepers and members of the public (apart from his tendency to strike up a conversation with a total stranger, and tell them every intimate family detail!). He's charming, polite, helpful and a treasure. He still has his problems but he's working to overcome them. He loves acquiring knowledge and what I most often hear from total strangers, after only a few minutes conversation, is "What an intelligent child!"
They can see it - I can't, as much.

Your son sounds highly visual (early reading, including newspapers). When schoolwork is presented in writing, it minimises distraction. I suspect his reading is enjoyable for him because the information is absorbed much more easily. Does he prefer having subtitles on when he watches a DVD? If he does, does he watch the same DVDs over and over? That is very telling, they're often rehearsing social cues when they do this. They don't realise they're doing it.

I really wish I could meet your son (and MWM's son), he sounds so much like difficult child 3 at that age. And when I look back to how difficult child 3 was, and see where he is now, I'm so full of hope for so many other similar kids.

Marg
 

SRL

Active Member
I've had really good results with my difficult child by using more general descriptions instead of the clinical terms of the diagnosis. Instead of telling my difficult child he had to see a doctor for anxiety disorder, when he asked why I told him that everyone in our family has to see a doctor for some special reason: one sibling to get bloodwork because he was very always overtired, mom the allergist and ENT for allergies and sinus troubles, little sis the dentist because she was born with teeth that have crevices and gets lots and lots of cavities, him because he was a lot more scared to go to school than his classmates. I've always taken this approach with him and I'm sure that he's been far more accepting of his issues when presented like this. It doesn't come off as there's something wrong with him, it comes off as he's got something different about him just like everyone else in our family does.

Instead of saying ADHD, one might say you were born with a body that doesn't want to keep still. This might be a better approach for some younger and/or more resistive kids.
 

BusynMember

Well-Known Member
One thing about Aspergers that some people don't understand. The kids can and often are VERY VERY friendly, BUT they are extremely inappropriate. They don't know how to play with their peers and they alienate their peers because they have no social skills. It's not being unfriendly; it's being socially clueless and impaired.
Just curious. What is a syndrome mix? Sounds like he is going to work primarily with drugs? Does he not think Seb may have Aspergers? He doesn't think he needs interventions of any kinds? My son had serious sensory issues (swallowing was also hard). With interventions though my son is doing great, his sensory issues are really improved as are his social issues. Is this doctor going to look at the younger boy? Are either getting any services? Most importantly, are the kids getting better? My son started improving right away with interventions (it was started before age one, and it's been fantastic). in my opinion it wouldn't be a bad idea to get a second opinion. I'm certainly not a doctor, but again in my opinion he needs more help than he's getting, and behavioral methods (normal ones :smile: ) often don't work with our kids. Whatever you decide, good luck. We ran the gamut of wrong diagnoses and I just want you to be careful...it can be tricky to get the right diagnosis. and treatment :smile: NeuroPsychs do intensive testing. in my opinion they are far superior diagnosticians to any other professionals and can figure out ADHD from Autism Spectrum Disorders (ASD) and also spot learning disabilities and other problems that other professionals basically dont' look for. in my opinion behavioral methods likely won't do the trick and things may get worse if the core issue isn't found and addressed. in my opinion, the label DOES matter because you can't get help for, say, Autism Spectrum Disorders (ASD) if your child's label is only ADHD. You get a lot more help for Autism Spectrum Disorders (ASD) than ADHD because it requires more and different types of interventions. And so on and so on.
 

smallworld

Moderator
MWM, there's a book out called "Kids in the Syndrome Mix" by Martin L. Kutscher MD. The term "syndrome mix" refers to the whole range of co-existing neuro-behavioral disorders in children. Let's face it -- lots of our kids here have more than one disorder (including my own). The problem comes when you try to treat one issue without addressing others or if the treatment for one condition makes the symptoms of another condition worse. That's why, as you well know, it's so important to get as close to an accurate diagnosis as you can so you can put the proper interventions into place to help the child.
 

SuzyfromTexas

New Member
Hi Ella,

You are cracking me up reading your posts. Welcome to the board.

Once again it amazes me how many similarities I find with other people on the board. My son, six, is gifted in a few areas only (verbal) but our main problem is his frustration tolerance level. Also, he is pretty disrepectful to me (luckily it's pretty much just directed at me). If I could get these things under control, things would improve greatly. I know I shouldn't admit this but I really am dreading summer vacation.

Socially, he does well and I hope that continues but he is only six.

A neuropysch exam should uncover much more about how your son is wired.

I forgot to add a funny story about Alex when he was about five. We were attending church one Sunday when a baptism was being performed. Our priest asks for all the children to gather around the baptismal area for a good view. As the priest was pouring water over the baby's head and the church was dead silent, Alex asked "Does that water really work or what?"

Also, at my husbands grandmothers 86th birthday party, he asked her if she thought she'd make it to 90.

I'm a social person but kind of shy so sometimes I think God is punishing me!

Again, welcome!
 

Marguerite

Active Member
A few more thoughts (sorry, I'm verbose today).

MWM, if I said the diagnosis doesn't matter, it would have been in the context of day to day coping. Sorry if I was unclear. My point - yes, a diagnosis can make a BIG difference in the amount of support you can get through official channels; and if you happen to need that degree of support, then yes you go and get the most appropriate (and most serious, sorry!) label you can get your child to qualify for. It's a very negative way of doing it, I feel, because this is only looking at how bad things are, and what the child can't do; but it has to be done to get the support.

But day to day coping - the label doesn't matter anywhere near as much, because all you need is some understanding in yourself. Yes, the right label can help there, but even if you have your suspicions and can't get anyone to officially diagnose (or you're still waiting for an appointment) you can still start to deal with what you see every day. Sometimes what you feel needs to be dealt with, isn't connected to their official label. For example, easy child 2/difficult child 2 only has a label of ADD (inattentive-type). But over the last few days especially, she has needed more support than usual. She gets angry and upset, we have to know how to deflect her so we can calm her and THEN deal with the problem (if there really is one). She forgot to take her printed assignment to college last night, when it was due. She'd had it since the night before, she just didn't organise herself properly (another facet of her problems). She was text-messaging BF2 for emotional support, he texted back the suggestion that she use her afternoon off today to hand the assignment in; it means a bit of extra driving, that's all. And that she shouldn't text during class!
She got home and was irritable at every little thing as soon as she came in the door. She was snapping at her father, then insisting she wasn't being snappy, but us suggesting it was making her snappy, so it was our fault. Then she burst into tears. Even though she had a good plan in place, the accumulated stress is something she doesn't deal with (she should be better than this, at 20).
husband could have got defensive - his authority was being questioned. Instead, he shut up and waited for the storm, when her tears surfaced. They had been the real problem.
End result - she talked when she needed to, instead of running off crying that we were being mean.
Basically, we treat her as we do, day to day, based on our understanding of how she copes (and doesn't cope). The diagnosis makes no difference here, we have to ignore it because it doesn't explain this.

So when it comes to finding the right person to see, to get a diagnosis reassessed - MWM is the person to pay attention to. Australia is a bit too different. But when it comes to finding your own ways to cope, including lateral thinking - others here have done it too, but our very simplistic health system in this area means that our family has the Masters degree.

Back to topic - I have an idea about the swallowing. Did you realise that this is an area specifically for Speech Pathologists? They work with patients with swallowing problems for all sorts of reasons. My mother had one working with her, after a stroke. Babies with cerebral palsy. And kids with sensitivity problems due to textures. So what I suggest - follow advice about checking diagnosis, separately. In the meantime, deal with the symptoms. Swallowing is one symptom.

If his younger brother has language delay, chances are you already have a Speech Pathologist on speed dial. Begin by asking that person if they have any advice on the swallowing difficulty in your older son. Then see where it takes you.

My kids are fussy about textures in food. difficult child 3 especially will not eat anything with a creamy texture, except yogurt. If it has cream in it he won't eat it (unless it's ice cream). No custard. No gravy. He will eat mashed potato, but he prefers it if I give him his potato pieces before I mash the rest. easy child was the same. I grew up in a household where I HAD to eat what was put in front of me, and even though my mother knew I hated certain foods, she still served them up because she had a large family to feed and she couldn't cater to just one child. If anyone was catered to, it was my father because he was the breadwinner, he deserved to have what he liked.

So I'm very aware of how a kid feels, when asked to ingest something they feel they can't handle. And if he has trouble taking his medication, there may be some practical ways to help. However, there are likely to be psychological reasons too (ie upset at having to take ADHD medications), which need to be resolved before you can resolve the swallowing problem in general.
He needs to be able to swallow the medications, not just for ADHD, but for other conditions.

difficult child 3 was on dex fast acting when he was 3. There was only a tablet option, and the older kids tell me those tablets are BITTER! But difficult child 3 chewed them up happily, called them his "crunch tablets" (at least, that's what he called them when he began to talk). He swallows them now, which is a good think since two of his tablets now are slow-acting, but he prefers to take them dry. Because of his medications, he's always been good with other medications too, taking antibiotic capsules instead of liquid. A good thing, because the liquids are creamy; they have weird flavours; that have colours that he is allergic to.

While you're waiting to talk to the Speech Pathologist, here is a thought - it worked for us when difficult child 3 was 3 and about to start on medications. We got a box of mini-M&Ms and had him practice swallowing those, When he'd got the knack of swallowing, he was rewarded by having the rest of the box. There are other sweets, such as musk cachous; those silver cachous you decorate cakes with; tic tacs - whatever you use, make sure it has a strong flavour that he likes, because even swallowing them whole, he WILL notice. But don't force it - if he can't, he can't.

difficult child 1 hates taking his tablets because he hates the flavour - he uses cordial concentrate (raspberry or lime) to wash them down. But you have to be able to swallow, and I really think this is going to take an expert to help. Anxiety will make tablets harder to swallow - do you remember being in the principal's office as a kid, and not even being able to swallow your own saliva? You feel the lump in your throat when you're upset, how can you swallow anything? Then anxiety brings in fear of choking when you try, and it gets worse; it cycles round and round in a negative spiral.

And after she was so upset last night, I had a hard time trying to feed easy child 2/difficult child 2. She was calming down, but still having trouble swallowing. She finally ate about half her dinner, it was chicken schnitzel which she really likes. But even that was difficult.

So hang in there, we've all thrown in some good ideas - now you just have to start channelling Mother Theresa!

Marg
 

EB67

New Member
I am so grateful for the replies and I am anxious to thoroughly read and reply but I am borrowing elecricity and a computer at a friend's house as we have been without power / telephone for THREE days now!!

When I last wrote I was on my way out of the house to go to Seb's doctor when the tornado / microburst hit. Shortly thereafter a tangle of live wires came down and all the power went out. I have been literally trapped in my house for days as there are guards from the power company protecting the live wires. You think they might pay someone to fix them rather than just watch them. I was stir crazy and managed to get out through the back yard, I'm a little out of it to say the least.

I want to read and write more but am on someone elses computer so bear with me until we get our services back!!!

Ella
 
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