Grrr!!!...these relatives always making stupid comments!

[mysonben]

Sorry for the rant but i need to vent...
Just got off the phone with my sis who lives in france , and hasn't seen my ds since march!

I told her , dh and i have decided to go for a formal written dx if that is what the paed recommends (some of you may know we have a paed appointment next week for ds 'asd).

She starts by saying we are wrong to want to label our ds, because he looks so normal, and his difficulties are mild,... wtf!!!
(Yes we know he is mild but she doesn't live with him to see his struggles sometimes.)

Then she goes on by saying that i analyse and scrutinise ALL of ds 's behaviours and put EVERY little thing down to his asd.
Then she goes on saying "oh my dd does this and that too!" and "my dd doesn't always understand what we say to her and she hasn't got asd!"
Maybe but her dd is nt and not yet 2 years old ffs!
My ds is 4 in three months!
How dare she compare the two of them.

And i do not analyse my ds' every move , maybe i did that for the first month after the verbal dx , because i was trying to make sense of it all and that was my way of trying to cope.
But i am much more relaxed concerning his quirky ways now, besides she hasn't even seen us since the dx back in april so how can she make assumptions like this from 800 miles away!

I'll stop now...sorry for the moan, i'm just so cross with the arrogance of some people who do not even understand my ds , asd and our situation.

After a little internal debate i decided to share the email I sent to my relatives:

In light of recent events I thought it might be helpful to explain a little more about kids with sensory issues. DS1 has Sensory Processing Disorder which has "autistic-like" symptoms. He may or may not have Asperger's in addition to this. That is something we hope to find out later this year. This link has some great information re: video about SPD www.examiner.com/x-10971-Early-Childhood-Education-Examiner~y2009m5d25-Autisticlike-could-mea n-SPD-Catch-it-in-early-childhood

What we do know is that DS1 doesn't react the the same way as other kids in many situations. He gets over-stimulated and does inappropriate things such as running and/or hiding, having a meltdown, and all sorts of socially unacceptable responses. He "stims" (self-stimulating) at times by snapping his fingers, whistling and repeating himself (palalia) among other things.

What seems on the outside as just "bratty behavior" has now been shown by research to be a biomedical/ neurological problem. These kids have behaviors as a result of what is going on inside their body and we have to figure out what it is that needs help. That can be challenging. Changes in his diet, occupational therapy, vision therapy, vestibular-stimulating activities and supplements have gone a long way towards helping DS1. He has been amazingly co-operative with all of these things. At the age of four he understood that he had to give up cow's milk, ice cream and cheese to help himself feel better. He handled it way better than I would have even at the age of 44! He endured laxatives and enemas over a 6 month period - along with uncomfortable medical exams - to clear the fecal impactions that go along with this problem (the "gut/brain/immune" triad).

On the other side, DS1 can play very sweetly with his little brother and younger cousins. He makes amazing drawings and designs of cities, mazes and most recently golf courses! He can remember the smallest detail from as young as 18 months of age. He builds fabulous lego creations and makes his own lego movies in real time. He is working on stop-action. He could put together a puzzle of the states before he was 2 1/2. He writes and illustrates his own books and is currently reading the Jack Sparrow series. He has overcome a fear of being in the water and learned to swim (in his own way), cannonball and wants to learn to ski next year. He has recently become quite enamored with putt-putt and is learning to tell jokes.

Life with DS1 is not easy but it is never boring! He is a special little boy and we feel blessed to have him as well as Ds2. We just have to make sure that he stays healthy and safe. That is every parent's job but it is a bit more complicated with a child like DS1. I take that responsibility very seriously and am always disappointed in myself when I feel that I have let him down. I learn more every day about what to watch out for in order to protect him and keep him healthy and vow to do a better job that day than the day before. I don't always succeed but I try to learn from my mistakes.

Love,

jabber

Well said Jabberwocky.
I wish i had the gut to send a letter to my sister and highlight all the things she doesn't ubderstand about ds, and all the misconceptions she believes.

Out of topic, you mention your ds could do puzzles at age 2.5, (that's amazing )
I saw a video on youtube a while ago about a tot of that age who was doing the puzzle of the states, was it your ds?
Maybe it's a stupid question , there are lots of kids around ,but you never know coincidence...

Intresting about the puzzles- ds3 was the cause of his nursery having to buy in a great deal of new puzzles as he could do 200+ piese at 3 yet not speak. He won't do them fior me though, wrong rotine.

Kids are weird aren't they?

lol, MSB, it wasn't my ds but he wants us to get a new computer to he can upload to youtube so rather ironic.

agree with Peachy, it's fascinating about the puzzles. At around 18 months we got ds1 a box of 6 truck puzzles. Easy little 6 - 8 piece ones. He would dump them all together then sort and work them out in a really short amount of time. At the time I didn't realize how unusual that was. Now I can't imagine ds2 doing anything like that.

exactly

It would be nice if those who came into regular contact with the boys were to read an internet page or two, but what I want for them is to accept that as non paediatric specialists (lady I am thinking of right now debt chaser) they probably dopn't have the skills to over ride the entire diagnostics team

That's all