autismmumsdads

Why does nobody care?

Posted on: February 29, 2012

I really wanted to share with you all the fact that yesterday I was informed that my 3 and a half year old Autistic Son, who is non-verbal will be discharged from the Speech & Language Therapy Department, after NO therapy.

The reasons why haven’t been disclosed but i will be demanding answers as to why his speech therapist – and I use that term loosely, deems his speech and language satisfactory enough to not be pursuing any type of speech therapy.

Since A was diagnosed last July, we where told he had been put on the waiting list for Speech Therapy & due to his diagnosis he was a ‘priority case’ & we would hear back from them soon, this was the same time I was promised visual symbols to be sent through the post – needless to say I’m still waiting – wow their printer must be slow!

My son has a speech disorder due to his autism & early intervention is absolutely crucial to his future development. He is way behind in his speech and language when compared to his peers & this can only add to his already present communication impairments.

I have a strange feeling, I’ll be told its down to lack of funding in our area – its disgraceful, and its not just happening to me. It seems ‘professionals’ don’t care unless its happening to them – and why would they? They aren’t the ones with a 3 year old son who is going to mainstream school in September with one spontaneous word in his vocabulary – and they bang on about giving our children the best start.

I have been lied to over and over again, why do we have to fight for everything for our children? Don’t we put up with enough already?

Many children with an ASD are delayed in their use of language and shy away from using speech. Therefore other methods of communication need to be established before speech and language will follow – is it too much to ask for some help or guidance as to what these methods are?

Why does nobody care?

Why is there a lack of funding for crucial interventions to be present for those children that need it to live their lives the best way possible?

I’m not the only one who is angry, upset and feeling let down. I have lots of friends – fellow Autism parents who are being let down with therapies or having to wait years for a diagnosis whilst their children are being labelled as ‘naughty’ its about time people stood up and became more aware and its about time people started caring for the lives of our children – they would if it was theirs!

Sorry for the rant but I had to get it out of my system, I and many others fight endlessly for our children and support is so important.

I’d also like to mention that I’ve had some wonderful support from friends on twitter who have given me some great advice – where would we be without people like this?

Any comments please feel free to leave them below.

L x

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22 Responses to "Why does nobody care?"

Omg!! That is absolutely disgusting! I sat there reading it with my blood boiling! Both of my sons have a speech&language disorder (far different than delay as you know) – Communication is the most important thing. Without the support, their bubble is a tighter cocoon around them and will be a more isolating world!

I’m wondering if your PCT is pulling a fast one? When your little A goes into school, the Speech&Language becomes an educational issue and passed on to County from the Hospital. That’s how it works down here in Dorset. By your PCT being sat on their hands, they are pushing it into the hands of County. But what are you and little A supposed to do until then? That is so much support he is missing out on.

I have been very fortunate with my boys as they had the John McNeill Opportunity Centre where there is a speech teacher there and the SALT visits several times a term. …… Little A is slipping through the net.

If I was in your shoes… I would write to the Speech&Language therapist and state that you are very upset that they’ve written your little man off and that as his mum, you will have no choice but to take the matter further as they are letting your son down. He needs the professional input now – He will have enough difficulties with building any type of relationships with his peers because of the Autism…. By not supporting him, they are making that barrier much harder for him to get over.
Have you applied for his statement yet?

Sending you huge hugs hun. xxxxx

So frustrating. I’m feeling the same way at the moment. We just want the supports needed to help our children cope and grow. Why can’t we get it?

its going to get worse as the dsm changes take affect by may of next year

“I have been lied to over and over again, why do we have to fight for everything for our children? Don’t we put up with enough already?”

Sounds incredibly familiar. My son, Brody, had limited language until he was about 7. I constantly butted heads with the school system for more speech therapy etc. but there was always an excuse. They finally wore me down. I decided to take matters into my own hands. I pulled him out of public school, worked at home with him and asked his ABA therapist if she would be willing to start an ABA style “school’ for him at her office. Thank goodness she agreed!

His language began to emerge. I attribute this to regaining his health and the non-threatening environment his ABA therapist created. It was a winning combination. The only negative….$$$$$.

Good luck to you. I hope your son gets the services he needs. -Leah

I think part of the problem is that Autism cannot be clearly quantified and the results assessed; I constantly have to defend my (amazing) speech and occupational therapists against people questioning how much they help my son. I know they help him because he has changed for the better since he started seeing them, but explaining the results is a little tricky sometimes.

Anyway, so sorry to hear about this and he is lucky that he has a dedicated and caring mother to support him; that is the most important person he needs x

I understand your position completely! How frustrating to get such a slap in the face when you finally thought your son would be getting some help to this vital thing that is speech.

I feel for you so badly. My younger son of 2 and a half years (not diagnosed with autism but is going through the diagnosis process right now and we’re expecting a diagnosis) is barely verbal and it is something that affects everything about how he interacts with others. Speech is so so important.

Is there nothing you can do to get them to reconsider? I don’t know the political situation in your area but how about contacting the government department that is head of Speech and Language Therapy Department, maybe even going as far as sending them a video of your son where he sits silent in situations where normal children would be speaking out? Just, anything to show them just how much he needs this.

I truly hope you will find a way to get your son the speech therapy he needs. You have all the support in the world from my end.

My very best,
Ragga

When R was diagnosed with ASD we knew he would need help with Speech & Language. He is verbal but had difficulty in pronouncing a lot of letters and putting words in the correct context etc. He was seen by Speech and Language for a period of time at which point they discharged him. We left it a few months but R wasn’t making any progress. We went back to them asking that he been see again.

He was picked up by a different therapist who was shocked that he was discharged. She has confirmed that he has significant delays, is well behind his peer group and needs a lot of support.

She has been very good with him and is making good progress in helping him overcome some of his problems.

My advice is to keep on demanding support until you get it!!

It’s so negative! I mean with what they did to your child. You and your child are in my prayers. 🙂

Absolutely shocking. Good for you for pursuing it and fighting on. It continues to amaze me that they can’t see the bigger picture and that intervention now will save them money in the long run, not to mention the effect on the child. Alfie is very lucky to have you as a mummy, don’t give up (I know you won’t!!)
Xx

1. Get a lawyer/attorney/solicitor to make sure you understand the law and how government agencies and service providers are supposed to follow the law.
2. Get a neuropsych evaluation for your child to identify exactly what he needs to make progress so you can be an effective advocate.

M is right. Get an advocate to help you. Awareness is not the problem here. My daughter was discharged from a speech program because the therapist was overwhelmed and insufficiently skilled in knowing to help her, not because her speech and language difficulties had improved beyond the 1st percentile. Amazingly, they said that she didn’t need help anymore. I took her to another speech therapist who was much more skilled.

We had the same thing when my daughter was about that age…they seemed to think because she had a couple of words she no longer needed it…she is almost 7 now, and has been on a waiting list for speech therapy for nearly 3 yrs…..I’ve realised now that we will never get it, unless we get her moved into special school (which we are currently appealing to do)

why is there so many Asd kids and so little help?

I’ve been on both sides. When I was a professional teacher I had to abide by the politics of the school. I cared, but not to the degree I could have cared. Now, having a child with ASD, and advocating for his rights, I know how important having empathy is. I am sorry to hear this. I hope you have support to do what you feel is best for your child.

Oh what a nightmare for you. Maybe you could get your GP to refer you again, thats what we did when M was discharged from his peidiatrician, and that worked.

The problem with S&L is there is a national shortage of them, so even if you do get any, it will be minimal, its usually on his statement (it is with M’s), and that actually means the S&L therapist goes into school once a year, and tests M’s levels, then gives his TA some exercises, and she delivers that through the year. We are lucky as M’s TA is very experienced so its quite good. It eventually reached a point where she said there was no more she could do for M, that his problems were not with functional mechanics of speech but ASD and thats just the way it is. She just monitors him now ready for High School.

Maybe your school (once you start) can start with PECs my friends non verbal lad learns that and its been successful.

You really need to get the statementing process started, if A’s nursery are attached to the school its easier, and will be vital for when he starts in September. Also, nothing is set in stone, if mainstream turns out not to be the right place for A, explore other options.

You are a strong Mom and have done a wonderful job so far, pushing for your little one, he’s very lucky to have you. Try not to get down, these setbacks try us, but make us stronger and more determined to fight. Its wrong but thats the way it is. I ended up going to my MP who went to the Director of our local LEA, once they know yr not prepared to be trodden on, they start to take notice. Unfortunately, the system means you have to make a right pain in the a*se of yourself so they sit up and realise you are not a pushover, which you most definately are not.

Good luck, and keep us posted.

Jo

ask for reasons of discharge honey x x x keep voicing your opinion ….you will be heard :::))))

It is a disgrace and I guarantee the excuse you receive will be due to lack of funding. It’s become the normal excuse for anything related to our special needs kids these days.

Does your son have a statement? Have you enquired about him going to special school? I fear, if his vocabulary is so limited, mainstream will be like hitting your head against a brick wall.

It will always be a constant battle because our kids need specialist support that is few and far between. Our job as advocate is to push, pester and persist. Our kids deserve better and we have to ensure they get it.

CJ x

OMG I am appalled, and feel somewhat embarrassed by my colleagues in the Profession! As you know, I left 8 years ago and have had to go privately to get a decent assessment to support the diagnosis of K. I have been so busy with enquiries for private therapy from all parents not just from those who’s kids have an ASD. Formal complaint needed, it’s the only way!

Hi its bad news as a former SALT and mum I can see it from both sides. There is a shortage of Funding and therapists which is frustrating for all concerned. I have had kids moved up my list if enough pressure was applied. As a therapists you have little or no control over funding needs to go higher.As a mum my son was discharged and his speech and language problems put down to delay then later his learning difficulties. Recently speaking to a.friend who still practices I am considering referring G as his language is still.delayed speech unclear has a tongue tie and dribbles slightly. All I can say is keep pushing for it find help through parent organisations or health groups to help you get the help you need. Also ask if his school has A Social Use of language programme

Absolutely scandalous !! What can I do to help? You do not need to apologise for your rant (done in a very nice way tho) – I feel your frustration

Not sure where you live but to deny a child in the US therapy because of money is a civil rights violation. There may be a provider shortage which causes waits but that is about it. Districts and states and counties have to find the money.

Be careful if they give you a medical reason try to get a second opinion. Sometimes they tell you that there is no reason since they won’t talk anyway no matter how much therapy they get. They try to pull that one too.

Meanwhile if you can’t afford a therapist yourself, there are on-line therapy stores that have games and other items used in speech therapy for children that you can try to use on your own. There may even be an on-line platform that you can use. I know there are some for ABA therapy.

I agree your rant was well deserved and very lady-like by the way. I would rant too.

That just stinks!

As parents of autistic children, we have to be more than parents, we have to be therapists, teachers and warriors. It sucks that we have to fight so hard and indeed the lack of caring is so sickening at times. But the truth is we are the only one who will fight for our kids.

I have been doing this a few years now and I think you are right no one cares I stopped putting too much energy into not caring as there is nothing you can do about it. I put my energy into persistence and not going away because although it sucks, you are the only person who will fight for your kid.

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