Medication

[InsaneCdn]

Canada is sometimes said to be the absolute best (sorry, USA) in terms of help for special needs

If Canada is supposed to be the "best"... then truly, "our" kids are getting absolutely nothing worth having.

Having said that, we do hear from time to time that we do well handling a few specific cases of special needs: MRDD kids tend to be well looked after, as are normal-IQ kids with strictly physical disabilities. And we seem to be working on some approaches for (severe, and with early diagnosis) Autism Spectrum Disorders (ASD) kids.

But if you don't fit in some neat little "box"... you get pretty much nothing.

 

[BusynMember]

I am thinking more of school interventions and options and most people who post here (certainly not all) realuze that in general, I am not in sync with mainstream Americans, am critical of the country and, heck, wish id been born in Canada.

Having said that, reading your experience with J and the French school whom I believe told you they had never before had a child with A D HD is alarming. Our system is really flawed here and it can drive you batty fighting for school services, but once you get them, they are often helpful. And all school workers are aware of adhd, Autism Spectrum Disorders (ASD), everything. They often would rather not spend the money on a special needs kid, especially if marginal, but they often do, if the parent brings an advocate and does not give up. You do have to fight for what you want your child to receive and often not alone.

It isnt necessary to homeschool, although sometimes a parent may choose that path for a child who can't settle down in school, even with, say, an aide.

Sonic has Autism Spectrum Disorders (ASD) which is a lot like A D HD only with severe social skills and often behavioral impairments. Sonic got good enough help, partly because we pushed and pushed, that by age nine his behavior, focus and learning skills were very improved. I give his Special Education teacher and aid the credit, plus Sonic himself. By high school he was nearly mainstreamed and is doing well as an adult. He lives in his own place, works part time and everyone loves him. I hear how nice he is all the time. Sonic started his life with us screaming, not sleeping, breaking his bedroom door with his head, biting, and very delayed. He started community interventions at before age two. It shows. The early part offered in my opinion were everything. They were free. At three he began special school.

You have not posted for a long time and its quite possible I am remembering wrong about the school in France and J so I very much apologize if I got that wrong. Also in this thread you mentioned the UK.

Have a nice day. Apologies if I misinterpreted something! And, trust me, I hardly feel the U S. Is perfect. Would move to Canada if I could.

 

[Malika]

Nowhere is perfect for special needs. I truly believe that! I went to the UK after a fiasco in Morocco with French people/schools who were supposed to understand and help J but did neither, believing it was some kind of El Dorado for special needs... what a naive illusion that was!! They have it all on paper and in theory - the website of every school in the land has reams about inclusion for special needs, this and that help and service, but in reality... nowhere has J been so excluded, marginalised and rejected as he was in the school in England. Everyone knew about ADHD, for sure, but they treated him as if he were from outer space - refused to take him on school trips or swimming, insisted he have a minder at every moment of the day, even in the playground, twice "excluded" him for his ADHD-related behaviour and would ring me up at the drop of a hat to come and get him when he did something they did not like. I pulled him out after six months (despite his having made friends and his not wanting to leave) because I could not bear it any more. Paradoxically, I realised that France, for all its ignorance of special needs, was actually no worse than the UK and probably better in that they never discriminated against J in this way.

Having said that... the tale is very probably different in London, where there is more enlightment and more resources - and I suspect the same is true of the big cities in Canada too?

 

[InsaneCdn]

where there is more enlightment and more resources - and I suspect the same is true of the big cities in Canada too?

Unfortunately, "enlightenment" and "resources" do not, generally, appear in the same setting.
Yes, the larger settings have more resources - and less enlightenment. If your needs happen to fit the supports they have available AND you qualify, great... there is lots they can do. Otherwise... it's worse than no resources.

The smaller settings seem to have more enlightenment - and less resources. Having worked with both, I'm not so sure we were better off staying in the city because of the "resources" - which we didn't get much access to any way. To be accepted as a person is a majorly important thing. To have teachers who, as a group, tend to NOT be bullies, is huge. (We have a much bigger teacher-bully problem in the bigger centers, where they expect the child to be able to conform exactly to the teacher's way of teaching - with or without supports; if you can't do it, it's because you are lazy or stupid or both. Our experience is that at least half of the teachers in a large centre are bullies.)

 

[BusynMember]

Malika, how painful for J and for you. Similar things happen here...teasing and phonecalls in many schools and I agree that your situation was unbearable. I was rather lucky (that usually comes into a picture too) because sonic started out in foster care and they knew he had been born with drugs in his system so his interventions started right away. Then...the school he went to was unusually awesome. The kids were so used to the special needs children that,although often the kids were mean to each other, most were great to the special needs kids. Sonic acted pretty much "normal" enough to have made some typical friends.

Had we put him in the bigger school, the resources were not as good, and the kids were mean.

So we lucked out by location and chance.

An interesting note: in our poorer inner cities schools in large areas, it can be war zones with violence and even in diverse school almost all the Special Education kids are black. Racist anyone?

Malika, you are doing a good job as a single parent...much harder I think than if you have a partner. I just get angry that there is no better answers worldwide for our differently wired young ones.

 

[Malika]

The problem wasn't the kids - it was the adults (who should know better :-( ) ! J has some lagging skills, we might say, but he is still a child like any other, does not need a full-time minder (following him even to the toilet!!), can go on trips and go swimming like any other child... I really got to hate this British double-speak that makes out they include and help special needs children but actually just patronise and marginalise them much of the time. These kids don't need to be made to feel like freaks - they need to have their talents and abilities encouraged, as any child does. The lack of sensitivity was just amazing... they had a period in this school when they would only let J come for half a day - and made him leave at 1, just as he was in the middle of playtime with his pals... I then had to deal with his anger and upset - as I had to deal with his anger and upset over not going swimming, in particular.

Of course I am no fan of conventional school anyway so...

 

[BusynMember]

Oh, no, of course they don't need somebody to treat them so differently. Sonics aide was in the back of the class and did not follow him for routine things and actually blended in to help several kids IF THEY ASKED FOR HELP. I would not have tolerated a full time babysitter in school either.

Conventional school is not for everyone, I agree.

Im sorry for Js experience and also for you.

 

[Malika]

Thank you. As you can tell, I am quite angry about the whole experience Maybe we just drew the short straw with this particular school. From what I hear about other special needs children in the UK, I don't think so, however.

The labels are really of limited help (I know they help get services, I accept that). If you stick a label of "ADHD" on a kid's head, you move them towards being seen and treated as some kind of freak. If you say rather that he or she finds it difficult to tolerate frustration and change, finds it hard to concentrate on boring, routine tasks, etc, I think one sees the child as a person who has difficulties that need to be understood. In this school, they went ON AND ON about J having ADHD but they never actually addressed, with sensitivity and clarity, what that actually MEANS... and so they were just insensitive and cruel in their treatment of him.

Of course each child is different. Neurotypical or special needs, each child is unique. Conventional schools are, by their nature, not particularly interested in those differences but rather in making children fit into the same mould.

 

[InsaneCdn]

and so they were just insensitive and cruel in their treatment of him.

A perfect example of teachers (and other adults in the school hierarchy) being bullies.

They aren't all like that. There are good teachers, good schools, good administrators. We never managed to get all three at the same time.

 

[BusynMember]

Terrible. Really. Ugh.
Have you tried alternative schooling, such as Montesorri?

Jeez, I feel terrible. Poor kid. Poor Mom.

 

[Malika]

Lots of poor kids and poor moms out there, unfortunately

 

[Roxona]

My J was on Concerta for several years when he was younger. As he approached puberty his body chemistry started to change. He wasn't eating, sleeping or growing. Basically failing to thrive. He was becoming more disruptive in school, so the doctor recommended increasing the dosage. This caused increased stomach aches. At that point, I decided to take him off of the mediation to see what would happen. I never really liked him being on the medication in the first place. Well, he started eating and growing like a weed, and he was sleeping better. With these changes, he was even able to focus better in school. It was by no means perfect, but his behavior was actually better than when he was on the medication.

Now with SS10, he was on Adderall, Clonidine and Melatonin for about four or five years, I think. I have been in his life for almost three years, so I don't have a complete history. However, from the sounds of it, he has been out of control for most of his life. They tried pretty much every medication they could, and I suppose the above combination worked the best, but not really. That said he wasn't thriving either, and in addition he was having serious issues with anger and night terrors, so I asked his father to take him off all medication, so we can see who he truly is. Like my J, he started eating, growing and sleeping better. He is still just as disruptive in school though.

In retrospect, I'm not sure that giving our children these medications are in their best interest. I'm not anti-medication. There is definitely a time and place for it. However, in my small, humble opinion, they never learn how to control themselves. The medication only serves as a Band-Aid to mask the symptoms. I think there has to be a better way.

 

[InsaneCdn]

In retrospect, I'm not sure that giving our children these medications are in their best interest

My experience: when working with a single, straight-forward diagnosis, or two closely-linked diagnoses with similar symptoms, medications can be wonderful. ADHD inattentive type plus Auditory Processing Disorders (APD) in auditory figure ground - methylphenidate was wonderful. Took away the intensive brain power required to survive in school, and enabled the kid to thrive.

Complex kids? Not so much success.

And yes, puberty messes absolutely everything up, including medications.

 

[GoingNorth]

I don't know much about ADHD drugs personally. I've taken both Strattera and Ritalin; both of which were a really bad idea for me.

My husband took Ritalin as soon as he got out of the Army, but he took it on an as-needed basis, not on a schedule, and went off of it once he became ill enough that maintaining weight became a big problem for him.

He was naturally very thin to start with, but very heavily boned, and when he was on Ritalin,he just didn't eat-period. Then, when it wore off, he'd eat the refrigerator, and be VERY cranky until he got a massive jolt of caffeine into him.

So, we dealt with the appetite suppression aspect of stims, but hubs was in his thirties when he started on Ritalin, so growth suppression wasn't an issue.

The interference with appetite and growth in kids on stims really worries me. I wonder what sort of long term damage is being done by these drugs as we are now finding that the brain doesn't finish maturing until somewhere in the late 20s.

We know that daily recreational use/abuse of stims causes CNS and cardiac toxicity. What about medical use???

 

[Malika]

Well, it's interesting... a week after stopping the medications, I find J more hyper, more impulsive and "silly", less able to focus BUT definitely pleasanter to be with overall without the prolonged rages or marked opposition. Any idea I had that the medications make him more compliant has been shelved.

I agree totally that we don't sufficiently understand the long-term consequences of these heavy-duty psychiatric medications on children. I am very wary now.