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Its taken 15 years! - but I think we're finally getting somewhere..

Denise63

Where to start...Undecided

First of all, I'm Denise, mum to two girls, ages 20 and 15. Just want to say hello to you all and I'm here in the hope of finding answers, help, understanding and support to the frustration we've endured as a family for almost 16 yrs.

This could be a long intro so please bear with me and any comments or input would be sooo gratefully received from you all. I'm here too to support others even though I'm very new to all of this myself. 

My youngest daughter Amy is almost 16 yrs old and to say she's had to struggle for so long with emotional and social interation skills would be an understatement.  She is a credit to herself for doing so and for getting through the everyday obstacles that she's had to deal with.

I'll go back to when she was a baby... she developed severe bronchiolitis which resulted in a cardiac arrest, she was resusitated, ventilated and remained in hospital for 3 weeks.  She got over that then we were worried about the development of her head/skull. One doc said it was because she had been lying flat but we were referred. She had two skull plates fused together prematurely which shifted the brain forward. Consultant reviewed her for a year and a half and said no op neccessary to open plates as it wasnt too severe.

Following this her young years were her either crying, no sleep, tantrums, severe naughtiness, totally irrational behaviour which we coped with, not sure how we got through it all to be fair, but we did. 

At approx ages of birth to a year we put it down to her being so poorly, at 1 to 5 years we thought she'll settle into a routine and sleep pattern when she attends school. At 6 years I asked for help, told doctors what was happening while my little one sat quiet as a mouse... Doctor could "see" no problems! ... no referral.  I went back a few times and no help.

At 9 yrs old i took it on myself to ask for a speech assessment knowing this could lead to other assessments. I phoned the dept direct, got her an assessment and they did follow up with other tests.  Final test saying - she is slow to process information given to her but we feel its not neccessary to do further tests.  We will write to school to ask for their opinion of her capabilities and how shes doing.  Result from that was she was doing well.

She was an extremely good pupil, still is, never ever had any issues about behaviour. She is a model pupil.  SHe would come home and vent extreme frustrations and issues bothering her but wouldnt ask for help at school.

Shes suffered badly with friendships, she's so loyal and would be so upset when things went wrong. She's endured bullying as a result of a lot of these so called friendships.

Ok trying to cut a long story short.... what is happening now is she is blocking things out, said she feels like she's not there when she is ... i took her to the doctors and they thought petit mal seizures.  When referred to neurologist and a good talk to her they said it isnt petit mal or absense seizures, its anxiety and they picked up immediately on social interation skills.

They are sending her for a brain scan to rule out the epilepsy - then onto somewhere for assessments. They are also writing to her school to find out how she is socially and academically.  Both of which the school will say she is doing well, i know they will. Theres too many pupils for them to notice any other.

Neurologist asked about her academic abilities and we got her a private tutor for the last year to help her get through her GCSE's which is helping greatly. She's needed one on one and wish i'd done it sooner. Cost is immense and we probably couldnt have done it for the long term, but its helping now.

I feel so frustrated, angry that we've been let down.  But our priorities now are getting the right help she needs or at least an understanding.  It may be that she doesnt want the help but knowing its there is a relief if she needs it.

I also feel so annoyed and upset at myself for maybe not trying hard enough.

She is so looking forward to leaving school and starting college doing practical work which she thrives in.

We, like you all, love our children dearly, unconditionally and want only the best for them in every sense of the word.

Thank you all for taking the time to read this - if you got to the end! haha...

Wishing you a Merry Christmas with your families... xxxxxx

  • Well this was nearly 3 months ago and only today she has had a follow up!... I need to put this follow up in a new post as i really need new advice and help... thank you Azalea and Barnaby for your last replies. Hope you are both well xx new post to follow x

  • Hi Denise, i your story is near as darn it the same as ours, my son is 15 an got his aspergers diagnosis today, we are still quite shocked as we were told it would take until Feb for them to make a decision, but he scored high on both the test they did and made the decision today, he has some other problems apparently but they will deal with them in the spring. So that's 3 lots of peds, and two schools that have told us to stop being neurotic, and to leave him alone he's just nervous, we started this process 8 weeks ago, after I went back to the drs and demanded a referal to cahms, awe luckily got in today forbhis assesments as they had a cancellation, and were really worried about my son. and only last week I was in school 'again' and being told it was all irellivent as he hadn't had any diagnosis yet, and basically he would be treated as every other chitil until they were officially told different, we so wanted to march in there this afternoon and tell them,keep strong honey i hope you get the answers your daughter needs very soon

    Rx

     

  • Oh thank you sooo much Crystal, Azalea and Bananas for taking time to reply. I'm truely overwhelmed by the amount of support and understanding on here.  I was so worried about saying the wrong thing with not fully understanding things myself.  You've put me at ease knowing that you all remember back to when you were like myself, not fully understanding what is going on.

    Crystal - thank you so much, i've had a good look around the site now, theres some excellent information and I'm just so pleased i came onto here the other day.  I was at a bit of a low point, worrying and wondering what will happen. So pleased I came in here for a nosey around.. ;) I'm trying hard not to give myself a hard time over all of this.  It is hard, but i know now that with the right help which we are finally getting then things can only get better. Fingers crossed Amy gets all the right help she needs now.  Shes just come in tonight after having a mock exam for food technology and is huffing and puffing that it hasnt been good....i said well, was your food as bad as those profiteroles u made for us the other week?? she scowled then laughed, said no mam, not that bad!  I said well what are you worrying about? :)) I think I help, I hope I do... its difficult sometimes to know which way to play things, luckily sometimes i get it right.. :))

    Bananas - you sound like you went on the journey that we have been on!! totally. The assessments, the no diagnosis, etc etc, you have given me, infact you have all given me the hope that we will get to the end of this in a positive way. I;m so pleased your son finally got the help he needed.  Its the things like, understanding, especially educational needs and socially... and sounds like your sons car is his lifeline to, it will give him so much independence and give him the feeling of security he needs. I too hope we get the same help that you have finally got. 

    And last but certainly not least, Azalea!... Azalea, what can i say? but a massive thank you for replying to me.  I swear the things you describe in your message about friendships for one, is absolutely spot on with what Amy describes. Amy used to come home absolutely distraught, trying to fit in... trying to talk in a group but others would talk over her all the time.  She said i'm obviously not interesting enough for them and they dont want to listen.  She was so loyal to all of them and her good nature was totally taken advantage of.  If any of the groups of friends fall out, if any one is left alone, who do they turn to for either advice or a friendly face....but Amy! dont get me wrong, they arent all like that, she's finally got in with some lovely girls, but a lot of time through school she struggled so much.  Some still do give her a hard time. She wont answer back to the ones who are nasty, just takes it.  She goes mad with me if i say that we need to sort this out and i should talk to the head.  She wont have it at all. 

    When we went to the hospital the neurologist said about her having the brain scan and the assessments for her social skills - Amy was distraught when she came out and we were going home in the car.  She said, Mam please can you help me learn these things i need to know. I just feel like a freak the way that woman spoke about me.  I said for heavens sake you are certainly not a freak. That woman did NOT say you were anything of the sort - i pointed out all her amazing atributes, that everyone in the entire world is different from the next, no two people are the same. That doesnt make anyone any worse or any better than the next person. I said they just need to know if you maybe do need a little help in certain situations. A lot of social skills can be learnt and confidence too.

    I really dont know if i say the right or the wrong things.  I sometimes feel i muddle through, but i know it comes from my heart and I'm determined to understand more about what has been happening for so long and help her through difficult times.

    When we go back for the assessments would it help to jot down a few notes - remembering back to when she was younger and the little traits/obsessions behaviour etc - part of me thinks am i looking too much into the things she did, was this just normal behaviour etc... I really want to go through a lot of the things that are Amy. She throws her all into something that interests her to the point of real frustration and anger if no one gets on her wavelength with the things she is passionate about. For instance - and this is very interesting to be honest - she is very interested in animal behaviour and is one day determined to study this. She adores animals. She has been the brunt of a lot of negative comments from some at school about it, saying she should going for her A levels in maths, english etc... I totally disagree, i want her to be happy doing the things she wants to do.  Her sister goes to University and is going on for her Masters degree - I will be equally as proud and equally as happy if Amy is happy doing everything she wants to do for herself too. I have always said the same, I want both of them to do whatever makes them happy.

    Wow i';m rambling... where did that all come from.

    Thank you again Azalea, what are you studying now? are you at college or are you still at school? 

    If Amy does get diagnosed with aspergers would it be better to be telling the school at this late stage.  She has only 6 months left after Christmas.  Do i tell college? I dont want her feeling singled out.... but surely this can only help.

    I hope i'm not saying things out of line here.  I dont know how to put into words the questions that are in my mind at the moment.

    Thank you once again... thank you all.

    Denise xx

     

     

  • Oh I understand how you feel. We finally got a diagmosis for my son at 17. He was referred at 7 and aagain at 14, both times it was felt he had a little bit of this and that but not enough of anything to diagnose.

    When  he went into depression and dropped out of sixth form finally they listened. The assessment was a simple questionnaire talking through with a psychologist mainly history. the notes of file from previous reviews helped ( we had to wait 6 months for an appointment even though they told us they though it was autism)

    I understand the frustration - if only you had the diagnosis way back you would have got a  lot more help and saved your daughter untold misery.

    Howver, I hope the diagnosis helps as much as it helps my son. He nows know he is not naughty - which is what the school thingks. We understand anxiety is what triggers his anger, and he is on meds for the anxiety now which helps. He's 18 now and chlaims DLa which has meant he can pay for a car and avoid the stress of public transport to get to college. College have been great and work with him now - not on his case if he doesn't feel able to come in.

     

    i hope you get the breaks you need to take the pressure off the whole family.

     

  • hi Denise.  A while ago I posted that I wish I'd known then what I know now about asd, diagnosis, professionals, education, social services, care providers, benefits, the law, etc etc etc!   Obviously we can't learn all that stuff at once.   Like you + probably others, we do wish we'd been better prepared at the time.  But that's easier said than done.  This site is full of info + support, so if you haven't already, have a look around.  Knowledge is Power.  Also ask questions of those involved, either at the time or later when you've had time to think things thru. Whilst we can't alter the past, we can have influence on the future.  Don't blame yourself, that leads nowhere except onto a guilt-trip.  You have tried hard to help your daughter.  That's obvious.   Look forwards, not backwards.  Your priorities are spot on.  I hope you get the answers + all the help that you both need.  I hope your daughter enjoys college.  bw

  • Any comments would be so gratefully received as we are at a loss how to feel etc.  Will we finally get to the bottom of it all, or will it be another dead end.

    I hope we get some answers from somewhere.

    Has anyone else gone this long after asking for help? and what were your final outcomes?

    One other question is - what tests and assessments do they give to a teenager?

    I still feel like i know nothing at all about what they are doing, yet i'm going along with it.

    I guess next visit I will be in a better frame of mind to ask these questions.

    Thank you for listening xx