Monday, August 3, 2009

Steps towards acceptance...



The weeks following our visit to the Professor were filled with moments of confused and conflicting emotions as the reality of the diagnosis settled in. I think that it is an important step that needs to be taken before acceptance can finally happen. Some days were spent with moments of great sadness, some anger, a pinch of self pity and finally acceptance. Munchkin was oblivious to my distress and confusion, which when I look back at that time is a blessing as I'm sure she would have found my constant mood changes distressing and bewildering had she understood my feelings...

Slowly, and most certainly not overnight, the moments of positivity started to become greater than the moments of depression and after a very brief pity party, we got up and moved on with what needed to be done. Every day, I would wait anxiously to see if the written diagnosis and report would arrive in the post so that the next steps of applying for things like the Domiciliary Care Allowance and Home Tuition could be taken. It seemed like months we were waiting but in reality it was closer to three weeks... Then the day arrived.

I ripped open the envelope and read the report. Even though I knew what was being written in the letter, it still surprised me how shocking it felt to read it in black and white. I made a cup of tea and let a tear run down my cheek as this was one of the moments that merited allowing a little squeeze of the heart and a little cry. There was more post to be opened. What I opened next would send my mind back into turmoil and confusion...

The AMO who had done the assessment in the July and the MCHAT scoring had sent a report back to the paediatrician I had seen previously. As in my previous post here she had agreed that there was indeed a problem with Munchkin and had urged me to apply for the Assessment of Need. The letter I received from the paediatrician, the same morning I received the written diagnosis, pulled the rug from under my feet. It was a scathing snide letter insinuating that all Munchkins perceived problems were in my head. Statements such as "inconsistent with her mother's concerns that ******* has autism" "she is young" "The Schedule of Growing Skills was very reassuring and maybe the echolalia and her difficulty understanding her own mothers speech may be due to the fluid in her left ear and not due to any difficulties with communication like autism".... once again I was left feeling as if I was being accused of M√ľnchausen syndrome

The old feeling of self doubt started creeping back in and my transition to acceptance had been given a huge setback. It would take a few weeks of self searching and constant questioning to get back to where I had been before reading that letter. When thinking back to it now, I feel immense anger that someone I expected to trust, and indeed the first professional to take me seriously could make me feel this way. It made me realise that we are not "people" to some doctors, merely a name and a hospital number on a chart. Months later, when I saw the AMO for the DCA assessment, my faith in some doctors were restored when she remembered Munchkin from the original assessment and when shown this letter from my file, was extremely irate that we had been treated this way. She promised that it would be raised in a meeting that footnotes of observations must be considered along with the MCHAT and Growing Skills scoring charts. I sincerely hope this is the case now for the sake of children undergoing these assessments now...

7 comments:

Jean said...

beautifully written petunia...it's so tragic that the professionals we once believed we could trust implicitly can be as flawed as the rest of us. thnakfully there are many good eggs among the judgemental lazy-arses who feel it's fine to charge E150 for a five minute consult and then to rip the rug from under your feet. We were so lucky with our paediatrician, but were told by two professionals previously that our son was fine. XXX

Anonymous said...

Here, here Petunia,
I was told by a "professional" that Iwas simply not talking to the boys enough!!...right.... so I gave my boys autism - bad, bad mammy (she obviously hadnt seen me wander the aisles of Tesco pointing at EVERYTHING and repeating EVERYTHING)....
Why do they feel the need to tell us its all in our heads? Was told by another Professional that Munchie was "just bold", and that she felt I was almost disappointed to not have a diagnosis (same Doc went on Maternity leave and her replacement diagnosed Munchie with Aspergers and ADHD within 2 months).... disappointed with an ASD diagnosis? - of course I was disappointed to hear my baby was on the spectrum, but I was more disappointed with the system that failed to see what I had seen for months previously... grrrr
another brilliant post Petunia. I love catching up with this blog
Hennie
xxx

lisadom said...

I think a lot of the people who make it through a very tough leaving cert, 8 years of university including medical school and internship at hospital - are actually closer to our kids than they care to believe themselves. Takes a certain amount of self focus and tunnel vision to get through all that and become a GP. So not all of them have time to develop people skills and let's be frank EMPATHY! along the way.

I am blessed with a fantastic group practice here in Co Wicklow where coming in for a sore throat can mean 15 minutes of "How are you really??" from the wonderful G.Ps.

You did great to accept and keep going after that bitch dissed on your report. Time to get a new doctor hon'xx

magnumlady said...

Very moving, well written.
It is a bolt from the blue to get a diagnosis.
Some people do make you feel really awful.
xxx

Anonymous said...

Great blog Petunia,
Years ago I brought my 3 year old son to see our G.P. and told the G.P. that there was something not right with him.
Explained he did a alot of flapping, roled his wraist, got very upset at loud noises and many other things ( cant remember everything as it was a few years ago) to be told by the G.P.to go home and stop feeling guilty for having a second child.
I told him I had planned both my children and I got very annoyed with him.
I get angry now because I left it a few years before I tried to get help for my son again.
The G.P. made me feel as though I was looking for something to be wrong with my son.
He was diagnosed with Aspergers four years ago and is doing well.
I enjoy your blog so keep up the good work.

jazzygal said...

Well written Petunia.

Don't talk to me about "The Professionals" as I call them! Christ, they all put us through the mill, don't they? I suppose Autism is difficult to diagnose in the very young... especially for the untrained (in Autism) professionals we come across in our initial search for answers. Some pooh-pooh us and others give us referrals even though they think it's "bold-child", "Bad-mammy" or ( as in my case) "older-mammy-with-only-one-child-and-unlikely-to-have-anymore" syndrome!!! And that was from our very nice and accomodating GP! I think a bit of empathy and understanding would go a long way. And "The Professionals" would do well to rememeber that sometimes, just sometimes...MAMMY KNOWS BEST! xx Jazzy

Petunia said...

There seems to be a common thread running through our stories girls when it comes to the professionals. Jean you are lucky that your paediatricain is one of the "good eggs" just unfortunate that it was a case of third time lucky!

Hennie, the professional that said you "werent' talking enough" to your boys should be shot! I'm sure like most of the girls here, you are not a "refridgerator mother" and that theory on autism was discredited years ago! Why oh why do they have to put us through the mill. Its not as if any of us would chose autism for our children and to say you were disappointed that they thought your child was "just bold" and not autistic.. how did you not explode at them! We are not paranoid when we see red flags and signs, we are observant!

Yes Lisa and Jazzy, you have hit the nail on the head when you say it takes a certain type to train and a little empathy would go a long way! Pity they don't squeeze a module in on it in their 8 years of training (or maybe they do??)

Magnumgirl and anonymous, thanks for the blog comments and yes, it is awful that people can make you feel bad for worrying about your child. If more professional actually listened carefully to the parents, they might learn something they would find useful such as its a common misconception that children on the autism spectrum can't form attachments or don't show affection.... How many parents have been told "Don't be silly, sure he/she gives you eye contact and is affectionate..." I know plenty of affectionate autistic children!

Think the message needs to be sent out to worried parents to trust their instincts and not take the word of their GP or PHN as gospel if is against what your gut is telling you. Follow it up with a second (or third) opinion as otherwise you may lose valuable intervention time.

xxx

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