Advice needed: Getting help in the mainstream health system...?!

[Kimby]

Hi all

Would love some advice on the best way to deal with unhelpful health "professionals".... and surviving the mainstream health system when it just wants to tell you that the reason for any difficulties is because you don't do things the way you "should".... (grrr)

We are just about to enter the child development system here in QLD as I have had some concerns about DS's (14 1/2 months) speech development and sleep for a while now. There is a history of speech problems and on assessment by my sister (speech therapist) there seems to be some delays which she seems to think are worth getting checked out. There are a few other little quirky things that DS does that are making me wonder if perhaps there are not some sensory integration issues going on as well - he has a lot of trouble getting off to sleep (even with breast on demand, or not, or cuddling, or anything... we also co-sleep and have also tried not co-sleeping) and sometimes it can take well over an hour or more to get him off to sleep, sometimes 4, 5 times a night. He also gets very frustrated at not being able to communicate well and is sometimes aggressive. I should add here that he does not watch any tv or have siblings and has never been hit by anyone...

Given these factors and a few more really complex issues that I won't bore you with by explaining on here... I feel that I have done everything I can and that some of the problems we are having may in fact be linked to something like Sensory Processing Disorder (SPD)... hence I feel the need to have him assessed.

I have come up against quite a few CHN and health "professionals" in the past who want to tell me that the sleep issues are purely because I don't let DS scream himself to sleep, I carry him as much as possible.. etc. Basically, I'm tired of being told that what is happening is a result of my parenting when I know that is isn't.

Any advice on how to get the help we need without being palmed off as an un-educated moron who just don't know any better?!

Any links solid research on the negative impact on CIO methods would also be great (to get my health "professional" sister off my case - as she is consistently referring to "the literature" to criticize my parenting and I don't have access to scholarly databases to gather evidence for alternatives!!!)

[tamarab30]

Hi Kimby
I am certainly not a professional but my son has had seven years of speech therapy, and the main indicator of major speech problems is how well they suck/swallow. Does your son have any issues there? Get chest infections alot? If so, he may be having some aspiration issues. I'm a little unsure though if he has no problems there whether 14 1/2 months is a little young to be concerned about speech? That being said, a mother knows when something is not quite right, so I suggest you try to find a really good GP, even if you have to shop around a little. See how you venture there and if they know of a supportive paediatrician perhaps to get your little checked out.
let us know how you get on and big hugs 2 u

[Nyree]

I'd be asking them all for documentation of their claims

As for your sister, mine studied Psychology, so I know that 'advice' all too well.

You might find this article interesting http://www.naturalchild.org/robin_grille/banished.html

[Kimby]

thanks for the support

Tamara - have already found a GP seems supportive and it was he that suggested we get the ball rolling to have DS assessed... apparently the public waiting list can be quite long.
DS does have some swallowing issues - chokes often etc which was another red flag for us - he also had really bad reflux as a little tiny baby and apparently that can be linked in also... so I've been told

I'm pretty certain that DS isn't talking like he should be - he understands a lot but he just seems to have trouble getting the sounds out. We had his hearing tested yesterday and that was fine. As for everything else I can't tell whether it's just me being over-anxious from listening to too much "advice"... my sister seems to be somewhat enthusiastic when it comes to finding problems and drama (especially in my life!) so perhaps a little re-assessment on my part is required?! I shall attempt to have a good think about it...

Nyree thanks for the great article. I was looking to buy that book by Robin Grille a few weeks ago. Thought I would check out the local library first but not joy... having read that article now I think i will definitely go ahead and purchase the book. I especially love this part:

There is significant social and professional pressure to conform, to not exceed the limits of nurturance that our community feels comfortable with. This has led many 'natural' parents to cloak themselves in secrecy.

So true. I have found in my own experience that this really seems to upset people. Most likely for the reasons listed in the article...

I'm expecting to hear back from the CDU in a week or so, so I will let you know how we get on.

Thanks again

[Bronnie]

http://www.aaimhi.org/documents/posi...led_crying.pdf

http://www.aaimhi.org/documents/posi...0Paper%202.pdf

i would suggest looking at failsafe. it may just hold some answers for you

www.fedup.com.au

[0BleSseD0]

I'd honestly be telling my sister to shove it.

This is your baby and at 14 1/2 months I don't think there is any need to worry about speech development.
Just keep chatting away with your son and he will be fine.

It was WAY too early to be stressing about that.


Ugh, Health 'professionals'.. Some of them are so disconnected.

[kristamumof3]

My eldest has certainly not followed the path of "normal" development. It has been a long hard road. He had about 10 words at 18 months and then stayed this way until 2.5 years. He then progressed at a normal pace with speech therapy but remained about 1 year behind his peers until now when he has turned 7. We found a fantastic speech therapist privately because once I had decided, just before his 3rd birthday, to go down this road I didn't want to wait for 6 months to get him assessed. The speech therapy was absolutely brilliant because it taught me the best way to teach him. His were articulation issues for no known reason. His mouth and tongue are fine as well as hearing. At 2.5 I found him getting increasingly frustrated that his peers didn't understand him which is why I decided that I needed to get help.

What I have learned is to gleam the information that I want out of health care professionals and ignore the information that I don't like. I have perfected the nod in agreement and then do nothing about it. I have armed myself with as much information about speech delays. There is a fantastic book "The Einstein Syndrome: Bright Children Who Talk Late" by Thomas Sowell. His research has found that most children with a speech delay and no other issues catch up to their peers by 7 which is exactly what Noah has done.

It was a hard road because social delays usually accompany speech delays since speech is a major part of socialising. People can accept a speech delay but get much more alarmed with a social delay and really they go hand in hand. It was very hard to find information about social delays without coming up with autism related articles. I decided to read these because they offered fantastic help - again I gleamed what I liked and ignored the rest.

Anyway enough about my story. Good luck with the smile and nod with your well-meaning sister.

[Kimby]

Bronnie you're a champion!! Those articles are exactly what I was after... official-looking-well-researched-and-all-in-a-neat-little-printable-brochure!!! Hehe I will be sure to forward those links...

Blessed, I can't tell you how much I would love to do that!!! Problem is she's hyper-sensitive to anything she considers criticism (which is anything that she didn't suggest or doesn't agree with) and I know that even asking her politely to mind her own will result in confrontation and her not speaking to me for an extended period of time. TBH... I can't deal with the drama atm... *sighs* - maybe someday I'll get a back bone.

Anyways, thanks so much for the support and suggestions everyone! These are all fantastic ideas. I really cannot tell you all enough how great you all are and how much I love this forum!!! It's keeping me sane (well... as close as I get)!!!!!

[JAK]

If you think there is something there, then go and get some assessments done. At this age, you can look at speech and see an OT for sensory issues. They will be able to tell you whether they consider there's something that will need ongoing assistance or take the wait and see approach.

Ds has been in speech since 18mths (but he also has hearing loss diagnosed around that time so we had an underlying cause for that). What did the doctor think your ds should be assessed for. As far as I'm aware Sensory Processing Disorder is mainly diagnosed through OTs (but don't quote me on that). Other things won't be looked at for some years and the public system has a disgustingly long, long wait.

I go in very singleminded with doctors and specialists. I have my list of questions and things I want looked at or done. I tend to ignore alot of what comes out of their mouths nowadays, my parenting style didn't cause any issues ds has and I tend to roll my eyes at any that try to tell me that. I've been known to be quite abrupt with them if they try and deviate from concerns about my sons development and to something like parenting styles.

I'd definately be looking at all other avenues too. Does ds see a chiropractor, I found that helped ds and some of his sensory stuff alot.