My children’s journey & lessons I learn! (3.) inc frustration!

FRUSTRATION

“Laughter and tears are both responses to frustration and exhaustion. I myself prefer to laugh, since there is less cleaning do to do afterward.”  ― Kurt Vonnegut

“Laughter and tears are both responses to frustration and exhaustion. I myself prefer to laugh, since there is less cleaning do to do afterward.”
― Kurt Vonnegut

So I am officially frustrated, where do I start?

Sometimes I wish I had never got my children assessed.  It is a fleeting wish, but one nonetheless.  It was like opening up a can of worms.  I know it should put me in a direction better to help them, but right now at this early stage it is like picking through lose threads trying to find the right one that will help in one way or another.

Yesterday we went to see the Clinical Psychiatrist for my eldest through CHAMS.  Once again they try to medicate.  My son got quite distressed and upset, shook his head got tearful saying “I don’t want to be medicated”.  I fully support him and it is not my wish.  You see years ago they said he had ADHD and should be medicated, I didn’t go back.  Now I have gone back because I ‘thought’ they would be able to help in other areas, and unless you go down all the ‘routes’ I don’t think I will get the NHS help needed, if there is any out there to be had.

So my son has dyspraxia, which effects him heavily emotionally and he gets stressed, he also has word finding issues and dyslexia, these can all lead to low self confidence, plus fidgetting etc, the private Psychologist has said under no circumstances does he have ADD or ADHD.  So he is moving a bit on the chair and playing with a cushion that has weird arm things on it.  He is obviously feeling under stress and probably insecure.

The Psychiatrist says to him “you fidget a lot don’t you?”  He says “yes”.  Then she brings up the ADD/ADHD and medicating him.  I look at her a little flabbergasted because as mentioned prior it is clear that fidgetting isn’t just a sympton of ADHD it is clearly also a sympton of all the other things I mentioned prior.  She then goes on to say that medicating for ADHD can make tics worse.  If we had wished to medicate this would obviously be a no no as that is one of the primary reasons we went in to there as we were told she was good at dealing with ‘tics’.

So then she goes on to say that he could be medicated for his tics.  I have done my own reading up on this and from what I have read, medicating is only usually for Tourettes and severe at that.  I mention this to her.  She says “It’s all about parameters and he fits in to the category for being medicated”.  I remind her that we havnt even been given the chance to try and manage his tics in other ways that we were hoping she would help us with, she just nods.

We all have moments of difficulty retrieving a word... it's on the "tip of our tongue" but we just can't find it.  However, for some students, word finding can be very frustrating, and can be more than just a fleeting moment of a word retrieval problem.  For students experiencing this, he/she may know the correct answer to a question, but may be unable to appropriately express what they know.

We all have moments of difficulty retrieving a word… it’s on the “tip of our tongue” but we just can’t find it. However, for some students, word finding can be very frustrating, and can be more than just a fleeting moment of a word retrieval problem. For students experiencing this, he/she may know the correct answer to a question, but may be unable to appropriately express what they know.

So moving on from this we then talk about his word finding issues, apparently nothing to do with them will have to get a Speech and Language Therapist for that.  Either go to the school or my GP again for this.  I seem to spend my whole life down at the Doctors with either my chronic pain or various childrens things going on, I am starting to feel embarrassed, they know me by face now.  We talk about the Dyslexia and she says this is also nothing to do with her, that would be an Educational Expert, perhaps the school will help, she is not sure.  So another thing to research and try to find out.

So then we revert back to the tics and how he is feeling.  Perhaps she can help us there?  She says that the school should be able to provide counselling sessions for him.  My son starts shaking his head, getting distressed, he doesn’t want to go to anything involving the school.  I can understand that, he has been hit over the head by a boy three times with a book, slapped by that same boy etc, various incidences yet the ‘teacher’ doesn’t seem to notice or care.  Why would he want to express himself in the very place the trauma happens.

Then we discuss him having counselling at CHAMS. It’s a possibility but something he will have to get his head around.  He says he only wants to talk to me and why can’t I get trained so I can help him.  Though inappropriate that did make me giggle at the time, I explained that would take years and it really would be better for him to see a professional, though it might be awkward at first he will eventually establish some kind of rapport with her and be able to talk about what’s bothering him more fully.

We move on now to eyes!

eyes

“When life gives you lemons, squirt someone in the eye.”
― Cathy Guisewite

So the private Psychologist says we should as our first port of call go to a Behavioural Optometrist.  We should go to one that tests for coloured overlays and does the Behavioural side for their Dyspraxia, the idea being it will give us a better idea as to exactly what is going on with both our children.  I have spent two days ringing around trying to find somewhere.

I find somewhere that is meant to be very good.  It is over an hour away.  They won’t take both children at once, so have to make double journeys and realistically half a day off each time from school and my husbands work.  Not to mention driving for over an hour and being there for 2 1/2 hrs more and the drive back will challenge my back.

But that is not the crux of it.  The assessment per child is £415.  Then if they need the Behavioural side, they have re assessments, then 5-6 appointments inbetween with two more re-assessments, could top up to £4000 including the initial assessment.

So I ring up my insurance company, they wont touch it with a barge pole.  I then decide to talk to my insurance company about my issues too.  I am due for renewal.  My current plan though they have been taking money off me for years that I have never used, will not cover me for any out patient sessions and will only cover me with a diagnosis and in hospital stay.

With modern day medicines etc, alot of things are now out patient, not in patient, not everything of course.  I asked if I could upgrade to get better cover.  They said “no”  That I would only be able to upgrade if I didn’t go to the Doctor or have any treatments of any kind for 6 months.  I said, “so if I go with a cold or an upset stomach this is included?”  “yes, that is a Doctors visit”  Suffice to say I was a little baffled and yes frustrated.

So I said to the sales woman, there doesn’t to be really much point in my circumstances having the insurance.  She said “yes we don’t cover anything chronic that isn’t going to get better, how think of this if you have to go in to hospital for something short lived and extreme, we will cover you”  I waited and thought on that, she then said “also the good news is if you get cancer we will cover you”.  I then turned around and said “but you just said you don’t cover long term illness’s nor ones where people might not get better” she said “oh but cancer is different”.

AAAAARRRGGGHHHH!

So, I am off to my eldests secondary school tomorrow to discuss his assessment and what they can do for him. I am then off to my youngests school hopefully next week to do the same thing.

Someone said to me today, do one thing at a time and at the end of the day, don’t forget your own health, because you are no good to them if you aren’t well.

That is advice I shall take on board because right now I am teetering between opting out emotionally and going in to the zen kind of place where “what will be will be” mindset to “OMG I can’t cope, I need to do something and something right now that is going to give me some light at the end of the tunnel”.

Wooohooo, that is it for right now folks, over and out!

OOps one more thing I just found this great blog on “word finding issues” called “Word Nerd Speech”

over and out

As always any support, comments & feedback welcomed!

  9 comments for “My children’s journey & lessons I learn! (3.) inc frustration!

  1. February 26, 2014 at 11:01 PM

    Oh geez. Sounds like my life. It is so frustrating sometimes trying to take on the world, especially when it involves helping our kids. I feel for you really I do. Couldn’t we all use a support system once in awhile? Glad we found each other♥️

    Like

    • February 27, 2014 at 9:09 AM

      Yes me too glad we found each other I read your posts and it is like your reading my mind sometimes, hehe. Shame you live in America, I was reading a post on isolation and having chronic pain over the last 2-3 years, friends have dropped like flies, now I am more mobile and getting out and about I feel less inclined upon reflection to try and establish those friendships that just dwindled because my life became difficult. So it’s striking up new ones, I do wish though the friends one makes here were not just through the ethernet, would be nice to have a cuppa and a chin wag so to speak face to face! However you are a great support system and empathyser (I know made up word but kinda makes sense) and friend x

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      • February 27, 2014 at 1:54 PM

        I agree. Sometimes I feel like I mesh much better with my blogger friends. And I agree…the similarity with some is crazy. I too felt a few times someone else’s words came out of my head. I move around a lot and it’s hard for me to find those close friends that I can speak open and honestly

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  2. March 1, 2014 at 6:37 PM

    My nephew has dyspraxia and ADHD, and he’s really struggling but it’s been better recently and he’s been more willing to try medication. he’s only ten, and right now he’s only taking something to help with his sleeping. My sister also has a three year old, and we live in Wales, but both the school he attends and the secondary school he will attend next year have been really helpful and already have things in place for him. He’s pretty lucky really, I can’t believe you’re having so much trouble. but then I have some serious problems with psychiatrists, they either don’t listen, or they don’t read their notes. I’ve fought with them myself for years over my own mental health and treatment.
    I hope you find something that works for your kids, and people that actually help. You all deserve better care from the health system.

    Like

    • March 1, 2014 at 10:02 PM

      Yes it’s complicated my youngest has add/ADHD but not my eldest and I was just so annoyed they wanted to medicate within tbe minutes of meeting him whereas the private assessor who spent 3 hrs with him said he def didn’t have it. Imagone medicating when you don’t need to esp on a child? Shivvers

      I’m glad your sister is getting good support. I think we will get support now from the secondary school we’ve had one meeting now so crossing fingers 🙂 just a long long process. Sorry to hear you havnt found it so easy that sucks 😦 thank you so much for the support and I hope you pop by again x

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  3. Lisa
    March 1, 2014 at 10:06 PM

    No wisdom / advice from this side….just {{HUGS}} to you all!

    Like

    • March 1, 2014 at 10:21 PM

      Thank you and sending those hugs right back! X thank you for visiting hope to see you afaon

      Like

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