What Do You Know Your Only A Parent ?

February 13, 2012 | Blog

Why is it professionals never really listen to the parents , what does the parent know? After all we don’t really know our children do we, well yes actually we do. I think professionals need to listen more to the parents when they air concerns. We do know when something isn’t quite right or the children are doing/not doing what they should.

Zak is a perfect example since he was 7 months old, I have said to people I had major concerns about him. He wasn’t doing what he was meant to , in fact he didn’t do a lot. Eventually someone listened and we had that dreading meeting with the paediatrician where you get told your child has …….

Except this time it was different it was Zak has autistic tendencies, so he started to get the help he needed and the appropriate services/therapies were put in place. This was very short lived one by one the therapies and services starting stopping, the excuse was due to the financial cuts. Ok I understand that one. Then professionals that worked with Zak said he was just being stubborn , stubborn I wish it was JUST that. So with this in mind more therapies were stopped. Soon all the intervention Zak had was ceasing.

Do you know how upsetting it is to see your 2 year old screaming because he can’t cope with the noises around him or he is head banging because he can’t cope with a situation. Or you see the look in his eyes as he watches his siblings playing outside as he is unable to stand without any support so can’t join in the fun. Or screams for hours on end because he can’t communicate and tell you what is wrong. Or how he gets upset when we have to change his routine. Or he gags when he eats anything with lumps in it. Or the fact he has to watch Mickey Mouse Twice Upon A Christmas repeatedly so yes that all to him being stubborn.

It will be interesting to see what happens now as he has got his official diagnosis of AUTISM how quick the services/therapies return. Then maybe they will see yes I am only a parent but I also know my own child

17 Comments

Scottish Mum
February 13, 2012 at 6:06 pm

I am so sorry they took away the therapies from you. It is awful that it is the children who need it who are losing out the most and the sad thing is that people without special needs children tune out for the most part.
- Wendy
  February 14, 2012 at 12:23 pm
  
  I couldn’t have said it better , think thats half the problem they just don’t understand xx
Daphne
February 13, 2012 at 6:20 pm

SO infuriating! I’m amazed how deeply stupid some professionals can be. “Stubborn” is a SYMPTOM, fools, not a sign of a “naughty” boy. One of my jobs is teaching Communication Skills to medical students and all kinds of healthcare professionals and I always emphasise – - listen to the patient, or the parent of the patient, and take what they say seriously. “Autism” and “rude” or “naughty” are often in the same box in people’s minds – - and the professionals at least should know better!
- Wendy
  February 14, 2012 at 12:22 pm
  
  Thank you for your comment
  
  I think common sense must go out of the window at times. I wish there were more like you that do listen – thank you xx
lrbond
February 13, 2012 at 8:37 pm

Went through the same thing with my son for years. Finally went to see a new GP about something for his baby sister when he was 3 1/2 and the GP took one look at him and said “How long have you had the Autism dx for?” My response: “What dx? the Pead (who he was seeing for a heart condition) refuses to acknowledge that there is anything wrong except poor parenting.” That was their reasoning – we wern’t giving him enough time-outs in the laundry. Stick with it and – as a parent – ALWAYS trust your gut. Much better for you to be considered a neurotic parent than have your child suffer for other people’s ignorance.
- Wendy
  February 14, 2012 at 12:20 pm
  
  Thank you for your comment
  
  Thats awful why do they think its down to bad parenting. Pleased someone finally noticed xx
  
  Very well said
Petra
February 13, 2012 at 8:54 pm

Although we are far away… we share similar experiences… At one point – when I didn’t want to be dismissed – I was told, that I ‘just want to be a MODERN mom… as Autism is very modern for child to have’… I was told that in my face from one of the specialists… You can just imagine my reaction…
- Wendy
  February 14, 2012 at 12:19 pm
  
  we do seem to have lots of similar experiences.
  
  I hope you gave them what for what a thing to say to you – well out of order
Michelle Daly
February 13, 2012 at 9:43 pm

I am so sorry you’re being put through this. There’s nothing worse than seeing your child denied the specialist services they need to thrive. I don’t know if you are friends with Bobbi Sheahan but you may be interested to know she has recently started a Facebook page ‘What I Wish I’d Known About Raising A Child With Autism’ http://www.facebook.com/pages/Bobbi-Sheahan/183544558417762#!/pages/Bobbi-Sheahan/183544558417762
Perhaps you could put a link to your blog on there. I hope you get on okay and people come around to your way of thinking.
- Wendy
  February 14, 2012 at 12:15 pm
  
  Thank you very much for your support .
  
  Thank you for the link I would love to put the link up x
Deb @ aspieinthefamily.com
February 14, 2012 at 11:57 am

I can’t believe that they have called him stubborn. How unbelievably ignorant they are. We’re gettng similar crap from school regarding my aspergers daughter – because “she smiles” because “she looks at people” (actual words from SENCO) there is no problem even though she has an official diagnosis. So frustrating.

I really feel for Zac and all our other children who are not getting the support as a result of these cuts. I hope you can get some services reinstated. Deb x
- Wendy
  February 14, 2012 at 12:13 pm
  
  Thanks Debs
  
  Its awful how they think they can treat parents. I hope you win the battle against school . Thank you too many parents are being affected by not getting adequate support x
Erica Price
February 14, 2012 at 12:02 pm

I’m amazed by this. I’m not a health care professional, but I would have thought in view of the family history that providing support would be a no brainer until Zak was old enough for an official diagn
- Erica Price
  February 14, 2012 at 12:04 pm
  
  Cont. Diagnosis. Don’t know whether you have time/ willingness/ energy to complain, but certainly feel you have grounds to do so. Those professionals should know they were wrong.
  - Wendy
    February 14, 2012 at 12:09 pm
    
    Thank you for your comment
    
    I don’t understand why they gave him the support then suddenly took it away his condition never changed. I will fight this when I get the official written diagnosis. Its appalling how parents are treated
Annie@A View On Design
February 14, 2012 at 1:56 pm

yeah I just don’t see why they can’t support parents like yourself, if it turns out you were all wrong, well so what! Maybe the early intervention was part of that turnaround. It’s ridiculous. It’s laws made by people who don’t have disabled kids. They don’t know what it is like. I hope things start to get better for you soon! xxxx
Claire howett
February 16, 2012 at 9:50 pm

I was very lucky, my Dr was very helpful and supportive when I raised my concerns about my daughter when she was just over 2years old. Sat up at one, spoke until just over a year old, then stopped making sense, stopped using spoon, needed more help with everything. I couldn’t put my finger on what was wrong,did not suspect autism. D gave me eye contact and loved to be held. Didn’t match my pre conceived notion of autism, only by chance read an article by a mum of an autistic child who sounded spookily like my d, in a paper. Im furious you are denied vital therapies by these pompous windbags who don’t know shit. God bless x