Sorry having a panic attack.

[Frangipani]

Oh boy if you read this you deserve a medal <'>

 

I guess its all finally come to a head with my son. I am feeling a bit overwhelmed at the moment, full of mixed emotions. I went along to this organization that can help him and for the first time I came face to face with lower functioning youth with Autism and moderate functioning Autism, and I realise ever since my son was four years old we kept giving him meds that made him appear normal, just to get him into mainstream, and all these years have been monitoring and special needs interventions and therapy's and more and more meds, and I realise I kept moving the goal posts trying to keep him up with his peers. It wasn't until he was 12 that his Autism became more apparent when all the meds just didn't work. He became almost non verbal, meds were changed and he was fine again. Then at 15 he had the nervous breakdown, took three years to get him back on track with gp, paediatrician and counseling only to realise, society was moving the goal posts even further, and now I realise I was trying to keep him up to his peers, thinking his doctor and I were doing the right thing.

 

I guess what I am saying is I always thought his Autism was mild, but when I saw this Lower functioning boy sitting in my way as I was about to leave the assessment team last Monday, this LF autistic boy about 17 sat their and looked up at me, and I felt embarrassed as a man was trying to pick him up to move but he stayed as his eyes were fixed on me and we locked gazes I wanted to say hello or give him a cuddle, but some Autistics get in a mad flap if you cuddle them and hate cuddles. I felt embarrassed and annoyed with myself as I didn't know how to react or behave. There was another girl sitting at the reception area she had autism too, they were letting her sit at the reception desk, allowing her to play like the receptionist, I could see she was moderate functioning, she too looked at me and locked gaze like Autistic kids do, but her eyes were all spacey, I felt a lump in my throat, as I realised, that's what my son looks like without medication. That is the look I have been trying to cover up for fifteen years with meds.

 

I sit back and remember when my son was diagnosed with Autism at the age of 3 & 4 my Paediatrician came along and talked it down and said it was A.D.D. but when the special school assessed my son they said that they had just done an intake of twelve kids and my son needs to be there more than any of them. I was going through a divorce my kids were only three and five when this all came to a head, I feel I made the wrong decision keeping him in mainstream, the only reason I didn't put him in the special school was because we had to be enrolled in a government school before he could go on a waiting list, and that meant another change for him from the catholic school, after moving twice because of family split, and moving closer to the special school. So much was happening at the time.

Plus the special school were so kind and trained up the special needs ed at the Catholic school to cater for him, and he went to the special school for workshops after school using ABA and other therapies.

 

I guess in hindsight the assessment team at this organization cant understand how my son slipped through the cracks and the school didn't get him into this program at the age of 15 or 16. I would say the meds were a good cover up. I guess with my partner and my daughter both having daughters diagnosed with brain tumours and the recent split with my partner there was so much else going on, and they said my daughters eating disorder and problems with development may be because of the tumour in her brain, and having a brother with Autism is stressful.

 

Sorry, just thinking out loud. I have been encouraged to talk about this with my church but, its too hard to talk about it with the connect group, as I have only been along to it once, I hardly know them. All this is happening at once, I feel like I have lost all my confidence. My ex refuses to pay any child support, I have an injured hip, needing an MRI, talking here feels easier, I guess.

 

I hate feeling so flat, just cant seem to kick it at the moment.

 

I guess I am a bit nervous about the whole thing, if someone could help me understand how to behave around lower functioning kids that would help, I dont know what to do.

 

One thing I now realise is that I wish I went through the drama of changing him to the government school and going on the waiting list for the special school as things may have been different, but hey, I just remember now why I didnt, the Principal of the special school and his wife were leaving and so were some of the staff from the special school, and they urged me to stay put. Some of the therapists set up out of school intensive workshops that he continued to attend until he was about seven.

 

I guess a no win situation all round.

Fxx

[Selkie]

I can't help with how to behave with lower funcioning kids, sorry, but I just wanted to say that it seems to me that you did what you thought was best, and in the circumstances I think I would have done exactly the same!

Hindsight may be wonderful, but it's pretty useless in practice

[Clare63]

<'> <'> <'> <'> <'> <'>

 

Oh Fran, I am sorry to hear how you are feeling, but please don't best yourself up about it all, hopefully by writing your thread its helped you to put things into perspective. I am sure the other will have some advice on how to behave with LF kids. Its awful isn't when you feel so flat, so many if's and but's. Wish I had something better to say to you to make you feel better, remember we are here for you and its good to talk.

 

Clare x x x

[Paula]

<'> <'> <'> <'> <'> <'>

 

Ive been round lower functioning autistic kids in my capacity as escort on school buses.............

 

Ive found for me the best way is to just be myself.i always speak to them normally.because just because they cant or dont wish to speak back doesnt meen there anyless inteligent than a child who can.i always make sure i tell them exactly what im about to do especially if it involves touching them.i also tell them that im aware my touching them could be uncomfortable for them and i apologise and say ill try to be quick.......Basically i treat them as id want my asperger son to be treat with respect...and understanding..and most of all not like there "thick"...........

[BusyLizzie100]

Oh boy if you read this you deserve a medal <'>

 

Frangipani, you're the one that needs the medal - you've tried for so long to do the best for your child. Hindsight is a wonderful thing but absolutely flippin useless and just upsetting, frankly. It sounds like you've had more on your plate than most for some time.

 

Think out loud by all means, because it helps you and it also helps us to do the same when we are up against it. Don't be hard on yourself <'> <'> <'> <'> <'>

 

Take care,

Lizzie x <'>

[barefoot wend]

Frangipani

 

It often strikes me here how hard we all are on ourselves.

 

Being a good parent is about doing the best for your child with the given circumstances, at the given time, with the given options available.....the mere fact you're here writing your post shows what a great parent you are.....Sometimes you have to shout it out to remind yourself.....Sometimes (when you're down) you have to let others do it for you....

 

 

 

 

(All together now) FRANGIPANI YOU'RE A GREAT PARENT!!!!!!!!

 

 

 

Barefoot

[Kathryn]

Frangipani,

 

<'> <'>

 

It's hard to look back on life and see all the things you might have done... if only... (I do the same, often. 15 years of blaming myself is a hard habit to kick )

 

What Barefoot Wend said - couldn't say it better. <'>

 

K x

Edited July 5, 2007 by Kathryn

[David Matthew Baker]

First of all just remember everything you did you did because at the time you believed it was in the best interest of your son. There will have been reasons that at the time you had to make and you went with what seemed the best choice. That is nothing to be ashamed of. Everyone when looking back at an experience can spot things they could have done better. All that is important is that you learn for the future. Your best at the present time is all you can give. You have given that and more to try and make your son as comfortable and as well catered for as possible. Whats more you have managed that when as a family you have faced a lot of challenges. That is nothing to be ashamed of. In fact you should be proud. Faced with a similar circumstance I'm not sure I could do as well as you did. I'm not sure many people could. Take pride in that and also solstice. Just think you have learnt by the experiences you have had. If you hadn't you wouldn't question anything you had done in the past. <'> <'> <'> That is all I or anyone can ask of someone.

 

As for interacting with lower functioning people with an autistic spectrum disorder I think most important is be yourself. Use the experience you have with your own son and treat them as you would him. Celebrate any small steps you see them make. Maintain a positive atmosphere, talk to them and show them friendship. If they seem to need something and you can figure out what again help them. In reality you can't do much more. Unfortunatally we can't mind read. That means we can't know exactly what they want. One thing to remember is to talk slowly. Also it maybe work backing up your words with visual prompts and signs. Finally be confident in your own actions. It is much easier for anyone to trust someone who is doing something confidently. Really though I doubt you need to be told any of this as I am sure it is exactly what you do. <'> <'> <'>

 

Keep your chin up and celebrate the joy autistic people can bring to your life. Try not to doubt yourself and never let the thought enter your head that you have failed. You haven't. All the best, David.

[Frangipani]

Thank you all so much. <'> <'> <'>

 

Your posts are a big comfort, thanks Paula and David for your tips with LFA and words of encouragement. I know I can do it, just needed to know how. Those are really good things to remember and I feel more confident now, just needed to know how they perceive things, I should know, but when you come face to face and in a panic all knowledge of what to do goes out the window. I wasnt prepared and didnt realise I would be interacting with them when I visited, I will take it gently and be better prepared next time. Thank you <'>

 

I am not sure if I mentioned in some of my earlier posts, but, my daughter and I had a meeting with the Paediatrician the other day and he said something to me and my daughter that gave us both a really big jolt. I was afraid to mention it on here, but, I know this is a safe place to bring it up, so I will.

He said to my daughter and I we have to face the facts about my son, we have to be aware and also make my ex aware that the future is uncertain for my son, that is the truth and the facts. We both went home and cried, thats when I lost all my confidence. My son and I went to the Paediatrician on the next Monday and talked to my son about this organisation, I beleive it is our only hope for a step forward, or last chance for the future for my son. My son actually said he was angry with dad because his dad sent mum some very nasty emails and he said mum seems to have lost her confidence.

 

My ex had a two hour appointment set up to speak with the Paediatrician after not seeing him for 10 years and cancelled at the last moment because he was stuck in Fiji on work matters. He lives interstate with his new family hardly ever calls the kids anymore. I am not surprised at all that he cancelled, although I did feel the blood pressure rise. So I just have to focus on staying well and not getting too stressed. I know this program is going to be good once we get him in, if, we get him in. It just hurt like hell when the Paediatrician spelled out his future.... No parent or sibling could ever get used to that. But truly, his dad needs to here that too, his dad lives in fantasy land and denial and blames me for everything, saying let him go and live with him, he will get him off the meds, and put him in the army which is just near where he lives, and tells my son he will teach him to drive, and he can be his chauffeur. I just have to learn not to listen to him and keep a lid on my anger, thats the problem, most people would yell and scream, I just keep it all inside.

 

Sorry rambling on again as usual. Thank you for your posts, they make me feel warm and fuzzy inside, at least I know someone is listening, I love this forum, I really couldnt be the parent I am without you lot. <'> <'> <'> even though your all on the otherside of the globe.

 

Love and hugs

F xx <'> you all deserve medals too

Edited July 8, 2007 by baddad
edited at posters request

[UltraMum]

<'> <'> <'> <'> <'> <'> <'>

[baddad]

Sorry rambling on again as usual. Thank you for your posts, they make me feel warm and fuzzy inside,

 

No, that'll be the Penfold's, hen

 

Same old same old - late again!

Glad you're feeling a little more connected again.

 

L&P

 

BD

(PS: I bought a new battery pack for my Minidisc recorder, and i'm hitting the shops next week to buy a small mic... THEN all I have to do is remember to take it with me! )

 

L&P

 

BD

[smiley]

Frag <'> <'> <'> <'>

[pearl]

<'> Frangi <'>

I couldnt better what David said in his post. Whatever we do as parents, with hindsight we can feel we got it wrong.

 

And as for the paediatricians comments - good grief. He's not God, he can't see into the future, he can make predictions based on his experience but he cant know for certain what is in store for your boy. That must have been devastating to hear and I do question his wisdom in being so harsh. Surely the best doctors would not seek to remove all hope.

 

Keep on posting hun, you know you have friends here. <'>

[Frangipani]

Thank you all teary now reading your posts. <'> <'> Certainly felt like a slam dunk Pearl, I think he was being so frank for my daughter, as he needed her to be more empathetic towards her brother and not so self centred and demanding. She has some health issues we are dealing with, but, she is expecting me to be superwoman, and I had to let her know I can't do it all.

 

Thanks Baddad, I am soooo looking forward to getting something from the meet up, wish I was there, it would be so nice to spend a day with you lot, that would truly lift my spirits.

 

Smiley, <'> lovely to see you back, and thanks Ultramum <'> always there to give me encouragement.

 

I remember Nellie went through a tough stage at this age and both her boys came through. The program her boys went through sounds similar to the program my son is going to go through. As long as he can remain enthusiastic about going. I am going to have another visit next week by myself, now I know how to be around LF Autism youth, and I know whatever happens its a step forward.

 

Thanks again for your encouragement. <'> <'> <'>

 

Love

Fxx

[Bullet]

I'm sorry, but I am furious with that paediatrician . How dare he decide to predict your son's life in such a negative way. Yes, without any support those might be possibilitiues for your son, but your son has support, through his family at least.

It is very difficult in most cases to know how someone is going to be in a few years time. At 15 I spent my lunch and breaktimes staring into space, unable to talk most of the time, unable to show any reaction most of the time to the verbal bullying I was subjected to. I would be very withdrawn at school and then lash out at home, screaming, swearing, hitting. I had never been out with anyone. I had no friends. My mum used to lie awake at night worrying about how I was going to manage when I left home, she didn't believe I could cope. I've come a long way since then. I'm still very much AS and yes, I do have a fair amount of difficulties, but I also have ways of getting round those difficulties and I have one very important thing that I didn't have at 15. I have greater choice.

[Bard]

I'm sorry, but I am furious with that paediatrician . How dare he decide to predict your son's life in such a negative way. Yes, without any support those might be possibilitiues for your son, but your son has support, through his family at least.

It is very difficult in most cases to know how someone is going to be in a few years time. At 15 I spent my lunch and breaktimes staring into space, unable to talk most of the time, unable to show any reaction most of the time to the verbal bullying I was subjected to. I would be very withdrawn at school and then lash out at home, screaming, swearing, hitting. I had never been out with anyone. I had no friends. My mum used to lie awake at night worrying about how I was going to manage when I left home, she didn't believe I could cope. I've come a long way since then. I'm still very much AS and yes, I do have a fair amount of difficulties, but I also have ways of getting round those difficulties and I have one very important thing that I didn't have at 15. I have greater choice.

 

Every post like this gives us hope for the future, and the strength to keep going. Thank you Bullet, a couple of years ago, I had accepted the possibility of monthly visits, and Strangeways on speed dial. That is no longer looking like a possibility!

B has come so far since he was 9, and he is learning new ways of coping and dealing every week. I think the older you get the more choices you have, and the less others feel they can just walk up and insult/shove/etc, because you have attracted their attention. I think my NT daughter will find 6th Form easier than school, and so will B.

Edited July 8, 2007 by Bard

[Mumble]

Hi Frangipani <'>

I totally agree with Bullet. We cannot know what the future holds and we shouldn't waste our energies over what might have been or what could have been. Bullet's description of herself as a 15 year old is very similar to the way I was, except that I would also lash out at school when I was wound up, scared, frightened etc. Most of the time I didn't cause too much of a problem (I wasn't smoking, drinking or at risk of teenage pregnancy) so the school didn't worry. However, they were academically driven and worried about standards. I was told I wouldn't get any GCSEs and should leave school once I reached the end of compulsory schooling; I'm now doing a PhD. The past cannot be used as a reliable indicator of the future. You clearly support and care about your son - therefore you have nothing to feel guilty or anything else about.

 

Mumble

[dooday24]

sending u loads of these <'> <'> <'> <'> <'> <'> <'> <'> <'> <'> <'> <'>

love donnaxxxxxxxxx

[Frangipani]

Thanks Bullet and Mumble <'> <'> I think the comments the Paediatrician was making are more along the lines that there is more wrong than Autism. I have always felt that.

 

I am going to ask the Moderators if they would delete those three words I mentioned in the last post, I have been tossing and turning since 4am, hearing those words was really hard, but reading them is going to cause me an ulcer.

 

I discussed this with the Assessement team at the organisation I mentioned and they reassured me not to worry, as they have helped many like my son, and they believe they can help. I just have to keep remembering that. I need to stop thinking about it all the time, is my next step. Worry only makes it worse.

 

Fxx

Edited July 9, 2007 by Frangipani

[Frangipani]

Thank you Dooday <'> <'> we must have been posting at the same time.

 

Fxx <'>

[stressedmumto2]

<'> I am glad you are feeling much better now Fragipani.

 

I read your post the other day and creid, Just read it again and am in tears. I feel very much how you do with medicating my son and I desperatly do not know what to do. I know without his meds it is impossible to get him into school and I fought so hard to get him into a school which I know will help to reduce meds and put other things in place that he needs but I lost and so I am in catch 22 if I stop his meds he will refsue to go to school and I will be told I am not helping him. But I get scared with eveytime he refuses to take them tha maybe one day we will be up against this and his world will come crumbling down around him as nothing has been put in place to help him but meds.

 

When the paed assessedmy son he predicted pretty much the same and it hurt like mad reading them lines, still does now but I am hopefull that evenutally he will be in the right enviroment and he will get the help he needs.

 

It sounds to me like you have done a fantastic job of holding it altogether and you really have done very well and should be prouf of yourself. In our lifes we all make choices, good and bad but we all do what we do for certain resons. My son has been medicated since 4 and god I so wish now he wasn't.

 

Things will work out for your son I am sure with the right amount of support, help and love form yourself and others but it's getting tha support right in the first place and In think now with the assessment team you will have it.

 

Just want to wish you lots o0f luck and thanks for posting how you are feeling it has helped me think abit more about how I am feeling <'> <'>

[dooday24]

glad u r feeling abit better have been thinking of u keep ur chin up <'> <'> <'> <'> <'> <'>

love donnaxxxxxxxx

[Frangipani]

..

Edited July 10, 2007 by Frangipani

[Frangipani]

We just made a huge milestone with my daughter, in another topic in Help and Advice titled

 

Daughters illness close to diagnosis.

 

We are finally on the road to recovery our family.

 

 

Love and thanks to you all x infinity <'> <'>

 

Fxx