Lecture 5: Community support for children with ADHD

A lot of the things mentioned in this final lecture that the children’s’ – and youth psychological department gave to us parents of ADHD children, were about the support we are entitled to from our community, here in Sweden. But certain aspects should pertain to all countries. And for the most part those are the things I have translated.

Expectations for children in school

* Children are expected to be able to concentrate for long periods of time.

* They are supposed to be able to sort out and focus on what is important.

* Sit still and listen.

* Work independently.

* Actively seek out knowledge.

* Organise their work on their own.

* Remember what they have learned.

* Follow rules and instructions.

* Be punctual.

I think all parents of children with ADHD will sigh and realize that nothing of all this is well suited for their children. They are set to fail from the start. And that is why the parent have to be a defence lawyer for their child! Fight for the child’s rights in a world that is really against it.

Things that aggravate the problems

* Untidy and messy environments. Often the classrooms are messy today with too many students, because of cut backs. This makes things more difficult for these children.

* Unstructured situations. Like recess. This is when incidents happen and you as a parent get report after report from the school that your child has done this and that. And this is what get other parents to phone you and make you feel VERY small!

* Assignments that are singular and boring. Instead of giving a child with ADHD three identical pages of math to do, the teacher needs to say that the child can do every fourth problem.

* Long instructions. The child will stop listening after the first sentence! Or listen selectively.

* Too high expectations.

* Nagging and Reproaches.

What schools often lack

The knowledge. Teachers are not taught how to deal with these children. When they get a child with ADHD, either they will just deem the child a nuisance, a mean, disruptive child OR they will have to do everything trial and error. Teachers really need to learn things on their own, get information, read books and demand education from the headmaster, in how to deal with these special children.

What the school is responsible for

* To create an environment where your child will learn, develop and function according to his abilities or condition. This ought to mean that the school has to adapt to the child not the other way around.

* It should offer extra support and adjustments so that the child can do the above.

* To cooperate with the parents. Communication needs to be open all the time. What works at home? What works in school?

What the parents are responsible for

* To contribute with their knowledge of what the child needs. Secondary information is never a good thing. It should come straight from the horse’s mouth.

* To be responsible for the child’s growing up environment and family situation. The school can not expect the parent to come running and solving things at the school, for them. What happens at school, happens at school and should be solved there by the school.

* Set up a system for regular communication. In our case it is by e-mail since it is too difficult to get hold of teachers at home via the phone. If ordinary children have one developmental talk/conference, per year or term, then a child with ADHD usually needs a monthly developmental talk/conference.

The child’s needs

* There must be an understanding that the child needs support. You can’t correct things that have gone wrong by throwing them out in the corridor.

* Help with getting motivated for learning. They find many things boring since many things are repetitive.

* Help to find their own strengths, what they are good at.

* Adapted requirement level. You can not expect as much from these children as you do with ordinary children. You have to be realistic.

* Ways have to be found around their difficulties.

* A lot of individual help is needed. This does put pressure on a school that is trying to save money!

Pedagogy for children with ADHD

* Encouragement and Praise.

* Well defined and clear assignments.

* Instructions in steps. One parent told that the teacher had made pictures and taped them to her son’s desk.

* Admonitions should be targeted, short and clear.

* Check up on progress often.

* Help with getting started and finishing. These children need more eye contact and that the teacher puts her hand on their shoulder or back, something physical.

* They need extra time to complete assignments and when taking tests.

* Practical, hands-on control

* Adjusted homework and assignments. They might even need help to do homework in school instead of at home.

Sweden’s new school law from 1 July 2011

I am not going to try to translate the law verbatim here. Hopefully, if one tries to read it over the net, it will have a translation for non-Swedish speakers in this country. And for my international readers, it will have no meaning to read it. BUT as the psychologist said, it is a fantastic law in words at least, because it spells out all the duties of the schools towards among others, children with ADHD. But as always, schools with little money will find loopholes and try to get away with doing nothing out of the ordinary.  The only thing I will say about the law and what to do with the school system is the following:

ALL parents at the course, complained about how little their children’s schools were doing for their children! All parents! It did not matter if a child went to an independent school, like my son does, or a council school. And we were parents from five different councils! BUT at the same time, when I heard of the help that some of these parents had been able to squeeze out of their children’s schools, I was impressed and wondered how the parents could still be unsatisfied. Some are never pleased I guess or are gluttonous for more! The sum of all this is though, that as a parent, you can never relax when it comes to your ADHD child. You have to work on his disabilities at the same time as you have to be his lawyer. Many times you are up against giants and feel like giving up. Many times you bang your head in the wall without anything coming out of it. Some parents suggested I change school for my son. But my answer to this is: Be careful before you do that. You might go from the ashes straight into the fire. And a move is a change which these children do not handle well. It’s a gigantic change, and before you do such a drastic thing, make sure you have tried everything first, and that you have complained everywhere that you can think of.

Care Allowance called “Vårdbidrag” in Swedish

In Sweden, you can apply for a care allowance since these children demand so much more care than an ordinary child. You have to go to so many meetings, you have to buy more clothes because they wear and tear on them too fast, they lose things that have to be replaced, they ruin toys and other things, they might need medicine, Omega 3 tablets etc… The list is long. When you apply for this allowance, you must have a doctor’s certificate of the diagnosis, and you have to tell “Försäkringskassan” (national insurance) exactly what life with your child is like, how it differs from taking care of a “normal” child. It is a terrible task to do. You feel awful but I have finally got to the point where I have applied. After losing his rain clothes, wearing out his new trainers in one month, the constant cost of his Omega 3 tablets, him filling our vacuum cleaner with water and taking two garden shovels to the playground where they got stolen, I had had enough and felt, that IF I can get some monetary help, I am going to accept it. But when I read through my description of what my days are like with him and the costs, my life really sounded like hell. In one way it really is. I am going to be honest and say that sometimes I sit and look at neighbours or people in church and think: How wonderful it must be to have normal children without any problems. Children that do what they are supposed to do. Children that behave, are well liked, that have friends, do well in school, that can go to the local council school and just walk there or take a bicycle. How simple life must be for those parents. No wonder they look so young, so happy, so relaxed. But these sort of thoughts are not productive. Now I sit in the situation that I am in, and have to make the best of it.

I have not been able to find any support groups. Or a whole lot of help, in the four years that my son has had his diagnosis. But I have been told that things do exist, so to all parents out there, just get on the internet and surf till you find something, anything. When my son got his diagnosis the testing psychologist, yes she was both testing him and being a testing person!, said “do not become an ADHD family now!”. I wondered what she meant and she said “a family who changes its focus to be on ADHD and doesn’t do anything but read up on ADHD all the time””. She recommended me to read only ONE book and that it must be from the same decade that we live in. The one she recommended was VERY lousy!!! And I am afraid, that when you receive a child with ADHD you are forced to be an ADHD family. You can’t avoid it since the child needs so much more from their parents and people around them! You must make sure that other siblings get what they need too, but you do stretch yourself no matter what. And as for reading too much. I’m afraid she was wrong there as well because the more you read, the better prepared you are for meeting the challenges. My husband has read nothing, and acts accordingly when it comes to our son. You need strategies helping you to handle the child. And since the child grows, the problems change. And there are always new situations. And as they tire of things quickly, you also have to come up with new strategies, all the time.

Finally I do want to add, that there are positive moments with these children. They often drown in all the bad moments though. For your own sake, and your child’s, you have to start looking for those moments or things will become too much for you. One program I just watched on the matter of ADHD, had an expert say, that these children are fantastic. While fear often prevents us from trying new things, new ways of doing things, these children entirely lack that sort of fear! They will try things. And while we are often stuck in a route, they are not stuck at all. They constantly think outside the box. They see new ways, they invent. It’s not surprising that a lot of great men and women in this world, today confess to having the diagnosis of ADHD. Nor is it surprising that a lot of great people of the past, also have had this. They have succeeded, so there is no reason why our children should not!

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