Stressed Dad | ADHD Information

Hello,

I've been meaning to put down my thoughts about my son
for some time now. I thought i knew exactly what to say
but now it comes to the crunch i'm not so sure!!

My son was diagnosed with autism when he was 4, and ADHD
soon after. We always had feelings that there was
something not quite right although as with many parents
we just thought he was quiet, shy and at times naughty
(crazy combination, i know)!!! He is now 7.

A quick overview on the autistic nature of my son. He is
highly functioning autistic, he speaks, reads, writes to
some extent and is a whiz on the computer. He tends to
suffer more in the social aspect. He struggles with
friends and relationships and will not involve himself in
communication very often.

When ADHD was diagnosed, we were a little surprised as we
thought it meant that our child would be extremely
naughty and 'bouncing' walls and terrorising everyone!
When the experts told us it could be that (!) as well as
not concentrating on tasks and flitting from one task to
another we realised that ADHD did fit the bill. The
doctor prescribed MEDIKINET XL.

My wife and I were not keen to give our son medication,
as i'm sure lots of you were, but we had to try something
as he was not having many beneficial days at school (or
at times at home). At the moment my son has 30mg before
school which the teachers tell us wears off by 2.30pm and
then 10mg instant release later in the evening to settle
him down for bed.

Sorry to be going on a bit, but the main problems we are
having are that pre-school from 6.30 (waking time) to
8.30 (taxi arrival for school), its a constant battle to
eat breakfast, get dressed and generally wait for taxi -
lots of arguing and shouting, not listening and having to
ask 10 times before anything is achieved.

Its a similar scenario at home time too.

This constant battle is made even the more upsetting at
weekends when we see him while the MEDIKINET is working.
From waking up until my son has his medication its a
slanging match and not very pleasant. When the
medication kicks in my son is very placid and co-
operative, but also i feel, a little 'spaced out'. It
hurts when i think that pre-medication we can be arguing
and angry with one another and post medication he is so
well behaved and sometimes in my eyes quite pitiful (not
sure thats right word).

When autism and ADHD were diagnosed we felt that not much
help was given. We felt we were left to get on with it,
and no parenting techniques were suggested. Obviously
there's lots of help online and i'm finding the forums
quite helpful, but i just wanted to get down my story and
thoughts so far in the hope that parents in similar
situations can maybe give me some help and advice and
that maybe others can see that they are not going through
a similar experience alone.

Thanks for listening...
:) Thanks for posting you're story! I can totally relate. My dc was diagnosed
with mild pdd-nos at age 3. He's almost 6 now and in December he also
got an ADHD dx. He sounds like your guy in the sense that his pdd-nos
is higher functioning. My guy is also very verbal - though expressively
and pragmatically his language is still lacking. His communication in
general, especially in social situations, is a struggle. His social motivation
is there, but his language deficits, and ADHD behaviors, often make it
hard for him to connect appropriately to others. He has been in
therapetuic school settings only, and that has been a blessing! He gets
lots of services in school, and is in a place with teachers who are highly
specialized in dealing with his various issues. His kindergarten this year is
also very academic, so he is learning a lot and making nice progress with
reading, writing etc. We had everything else in place in terms of schooling
and therapy, and I had also tried a million alternative type approaches to
help with his issues, including ADHD. Nothing was helping much with the
hyper, impulsive, inattentive, and distractible behaviors, and so when we
got the official diagnosis the only thing left to try and help him was
medication. We felt we'd exhausted everything, and kindergarten up to
that point was a struggle. We have had definite success with medication
since starting in January. The teachers said he's a different kid and
getting so much more out of school. His progress in school really started
happening after he started meds. Having said that, it's still not exactly
right. We also saw him being "spaced out" on 1st med ( short acting
Focalin) even though he was having good results in school. We did not
want to see him that way, so we switched to Vyvanse in Febuary. We've
seen some positives, but not enough benefit in terms of focus, attention
etc. We went to a new doc yesterday, and he wants us to try Focalin XR,
which is the longer acting version of his first med. we will give this a go
over the upcoming spring break. Point is, don't think you have to settle
for the first med doc prescribes. There are many to try that may end up
being a better fit for your son. He should not be so zoned that he's not
himself, and I know what you mean by looking "pitiful". I often felt my
very vibrant, and animated son looked that way on his 1st med. He was
going through the motions of what he was supposed to do, but he was
vacant- it should not be that way! The good news is the meds work in
that you can achieve the goal so that he can attend and learn,now it will
be matter of finding the balance between that goal, and keeping his
personality in tact. We are in that place now, and hoping this trial of a 3rd
med will be the one to give us that balance. I can also relate to the
morning struggle before meds...you are not alone in any of that either!
Hang in there. Look into other med options ( personally I have never
heard of the medication your son is taking), and know that there is hope
in finding that "magic bullet". I would also suggest a social skills class
somewhere if you can find one, and it's not offered in school already. It
sounds like that is his biggest issue in terms of spectrum related issues,
and social skills have been very beneficial for my son. Good Luck!mommatrying40261.2487384259Thanks for you re-assuring reply momma.

I'm from the UK so maybe that's why you've not heard of
the meds....i haven't heard of the ones you mention
either.

To be honest i'm not really sure what my lads true
personality is, but i'd like to think it was somewhere in
between the hyper and spaced out characters i'm seeing!!

We go to see the doc in April so we'll definitely inquire
about alternative meds (only tried the one), and i'll
also have a chat with school and other help organisations
about social skills classes. My son doesn't seem to show
the social motivation your son has, and would spend every
minute of the day on his laptop if we let him!

It sounds like you're well on your way to finding the
right balance.

Thanks again.Hi Bethann, thanks for your post.

I do know of the term Aspbergers, but it was never
applied to my lad - basically diagnosed as autism.

Your son sounds a lot like mine. He has friends at
school but i think its because he's with them all day and
has no choice but to be with them....does that make
sense!? What i think i mean is that if he had a choice i
think he would just play on his laptop / wii etc. alone
or with his sister or me. There are kids his age living
in our street who he plays alongside from time to time,
but no-one who he would specifically ask to play with.

We'll definitely get onto the school and other agencies
to see if there is any help out there with regards social
issues.

Just lately his behaviour has gotten a lot worse, he
seems more aggressive and argumentative. Not a lot seems
to work. He's never been one for rewards for good
behaviour or removing fav items such as the laptop (as
has just happened). Has anyone got any tips / ideas or
is it something we'll have to live with? We didn't seem
to get any help with regards how to deal with the
problems we'd get with autism and ADHD.

There is rarely time when i'm not worrying about what the
future holds for my lad, however when i consider all the
kids that are much worse off than mine i feel selfish.

TomCel
My 5 1/2 year old son has similar difficulties to yours. I can relate to
everything you're saying, from the overall sense of concern to feeling
guilty worrying about a boy who is so much better off than others.

My son was diagnosed with mild pdd-nos at 4, and ADHD at 5 1/2.
His Autistic traits of watching spinning objects have subsided greatly.
He tends to over focus on unusual topics. He is interested in being
social, but doesn't know what to do around children his own age or
bigger kids. He started taking meds for hyperactivity and impulse
control in December. He's much easier to live with! It took 4 tries to
find the right medication, the one that controlls his behavior without
supressing his personality.

Hang in there!   Thanks mama, it feels wierd not really knowing his
personality Mommatothestars: what med is your son on? he sounds like mine! We are
about to start a third trial. This time with Focolin XR. What was your med
journey until you found the one that worked, but kept his personality? This
is my goal and concern as well...thanks!

I have a friend who has a daughter with aspbergers, high functioning autistm and adhd, as well as other disorders. She has hers on medication as well. I don't remember the one but I can find out.

She has her daughter in a lot of programs that are paid for from the government.

The lack of social you describe describes aspbergers. Have you heard that term before?

My son is very adhd but loves his video games that are played live with other kids on the x-box. He has social trouble as well. He has friends IN school but nothing OUTSIDE of school. He actually plays this with kids from school but each in their own home.

Find out if your school has any programs that can help your son. My friends daughter goes to dances and social functions. She is older in age than your son, but behind socially.

Hi TomCel,

I don't know if any of us know our children's true personality just yet. I find my son changing as he gets older. I also found his adhd got worse as he got older. So meds were totally necessary for him to have a successful day. No way could I send him to school without them, not even now. He would be too silly and goofy!

He is academically ahead but socially behind, although catching up due to being in middle school and probably peer pressure.

We live in a clicky little snobby town where they schedule play dates. My son wasn't interested in them, nor were the other kids interested in him. He was excluded. He was labeled early on and never shook it off until middle school and there were A LOT more boys to befriend, and who he knew from playing sports.

May I ask, do you have a med called guanfacine or tenex? It is the same thing but it helps relax them. My son uses it along with his concerta, which is ritalin. I know the meds are different between our two countries, but there has to be something similar I would think. I also thought, but do not know, that there were some type of med for autistic children, or maybe it is just meds that are used her successfully. I believe again that they relax the child.

Tom, our autism diagnosis rate is so high here. Is it there? They now say that 100 out of 150 babies born will be diagnosed. And more boys than girls. I am a HUGE supportor of a program called autism speaks. I donate and do whatever it is to help find a cure. It is so necessary.

Is it being address in UK?

Thanks for all the support etc..

My son is really bright when it comes to some things. He
amazed us when at two he was able to read!! His memory
is something else too!! He remembers cheat codes which
are about 10 buttons presses!! His Gran wasn't pleased
when he dialled a competition phone line that he's
remembered from watching TV!! He's a whizz on the PC and
now shows us how to do certain things on there!!

I suppose it could be Aspbergers, but i don't know
whether the 'treatment' would be any different.

The problem we have with regards giving our son meds when
he wakes, is that they only last around 6-7 hours and
that would mean that the effects would wear off a bit
early in the school day. School are saying now that they
see a change around 2pm.

A Wii party sounds like a great idea One. My son seems
to only like computers and Wii and things of that nature,
and although i don't like it, he spends too much time on
there. But the way i see it, is that he / we have too
many struggles already and if it makes him happy....Oh no...it gets worse!!!?

Lots of kids understand the way my son is and do try to
accomodate him, but he doesn't seem motivated. I was
always into sports and was in the teams so i can see your
son will make lots of mates, unfortunately the sports my
son likes are on the wii!!

The only med i know of is the one we use (MEDIKINET)
which is a ritalin. It seems to do the trick, but i know
things will change as my lad gets older. Lots of other
parents i speak to mention other meds but none that you
speak of.

I am 37 and to be honest never really heard of autism
until my sons diagnosis. But researching autism i am led
to believe that 1 in 10 children born are diagnosed
autistic. As a family we support our local autism
society, but its to enhance our childrens quality of life
through activity rather than finding a cure.

There is a National Autistic Society in the UK. But i
think the general consensus is that there is no cure?

I've never bothered with forums in the past, but find its
really good hearing other points of view, tips,
encouragement and find it quite theraputic putting down
my thoughts.

so sorry, I didn't mean to sound like it gets worse. I think my son's struggles are from his adhhhhhhhhhhhhhd.

Do you  believe the diagnosis is accurate? Since adhd and other disorders can have traits of autism, I always wonder if we should re-evaluate our children as they get older?!

To me, your son sounds like aspbergers, but again, I am not a doctor, nor a specialist, just a mother. He knows what he likes, and does it.

We too have tough mornings until the meds kick in. But we have been doing for a while, is giving to him before he gets up, like 45 minutes, then when he does, they are in his system and the morning is smooth.

Our son is mellow for a bit, but then he breaks out. But it is at a more "normal" activity level. It is manageable and like the other boys at school. He is also an A student.

Here in the US, they are working and struggling to find out just why this is happening and why the 100 out of 150 are being diagnosed. There is a group called "Autism Speaks". I donate to their causes.

I also wonder if children will "change" as they grow. My son is now seeking social stuff more than before. Not sure if it is age, puberty, change of school with more friends, I don't know, but he is happy and that is all that matters. He doesn't attend dances, but likes girls from a far, and the funny thing is, the girls like him.

Tom is your son very bright, like extremely intelligent, brilliant even? A lot of aspbergers, autistic children have very high IQ's, they just struggle in social settings. What does the school teachers have to say?

I know it may seem inappropriate to promote video games, but have you thought about having wii parties? I'm sure there are other kids at school who love wii more than physical sports. My cousin's boy has Aspbergers and he does interactive video games on the computer with friends from school. Our local library has wii competitions once a month. If there isn't one in your area, you could start one!   

I was never very social, myself, until I was in high school and even then it was only with my select group of friends (nerds, one and all!). Common interest is the key. If that interest is video games I don't see why that couldn't be the focus of the "play-date".

I'm glad you found this forum. The more diverse the members the better the topics and more information to be found!

My son would love to go to your town.

I wish there was video game summer camp. I know it sounds horrible to say this, but it is very social for many children.

And I agree with what you said, I am so glad he found this forum too!

My only thought on the meds wearing off around 2pm is if there was a short acting dose that could be given to your son by the school's nurse.

You will want longer coverage to get him through homework when those days arrive.

It never amazes me just how intelligent these children are. My son also has an incredible memory to the point that a co-worker believes he has a photographic memory.

Who knows, they may have the cure for cancer, autism, the common cold, who knows!! They are all very special.

Our doc says that for his age my son is on quite a high
dose of medication already and is reluctant to let him have
any more.