I'm still one thread behind (don't think I'm ever going to catch up), but there were just a couple of things I wanted to add.
There have been neuropsychs, pediatricians and other medical professionals who have openly admitted to giving a false dx of ASD so that the student is entitled to more support at school.
I'm not convinced the ASD dx is accurate...That's not to say it isn't.
The 'shyness' and not wanting to be around or talk to people could be extreme Social Anxiety Disorder...no arm chair analysis there, just giving an alternative.
There is just too much overlap in dx'es and too little known about AL for any of us to know what his correct dx was. My guess is that he would have even been a difficult case for a professional.
NL didn't attend any of the ASD support group meetings. Why? because she knew he wasn't really on the spectrum, or because of shame and stigma?
It's time we stop saying 'we need to educate the public and our children more about people with different disorders'. We need to get out there and actually do it! They aren't freaks, or losers or weirdos- they are sick!
Why is there so much sympathy and acceptance for a person with cancer who is seen as a fighter and a survivor, yet there is still so much stigma about MI? Maybe AL would have gotten more help, or NL would have gotten better help and support, even for herself to make better choices if there was less stigma.
We need to spread the word however we can. 'Like' ASD and MI pages on FB and always share their posts. Show that you are not afraid to spread the truth and awareness and that it's okay to face these issues.
Push for schools to implement some part of the curricula to understanding the symptoms, traits and the truth about various disorders, enforcing the message that they are different, not less. (my favourite quote from Temple Grandin that I believe applies to all disorders)
When you ask someone how they are and they say 'okay' but you know that they're not, press the issue gently. Let them know you are willing to listen and have an open mind.
We need to educate ourselves about these disorders so we truly understand them no matter how differently they can manifest.
Parents that have children with any type of disorder need to feel 'safe' to discuss the real issues they face. It may take time for them to gain enough trust to talk about the harsh realities of these disorders.
I personally am honoured that my friend feels safe talking to me.That I was the person she came to when she was going to an ASD forum and felt torn because she REALLY wanted to go but had never left her son with anyone in his 8 years because she was worried about how he would cope and how the person looking after him might judge him and her about his differences.
How would you feel openly admitting that your child can be incontinent, or still uses a dummy even when they are adults for comfort and stimulation, or that they hear voices or see things? What about admitting that the scratches or black eyes you have are from your child. That they talk about killing themselves or other people on a daily basis. Or that they cut up, or burn their own bodies. That you can't invite people to your house because you don't know if it's going to make your child have a meltdown or beause your house is really messy because every minute of your time is spent on doing OT, making sure your child is safe and getting an education? Or that they smear their bodily functions all over themselves or the house.
How uncomfortable has this made you feel just READING it? Imagine LIVING it 24/7.
It's easy to say just put them in a group home if it's that bad. BUt as mothers we want to nurture our children and we love our kids and want to be with them regardless. When you hear so many terrible stories about the atrocities that go on in those places , and if your child can't/won't talk to you about what's going on there....how safe would you really feel leaving them there?
We've seen cases here where children with 'hidden' disabilities are abused, bullied and ridiculed by staff even at school which is just few hours out of each day.
Having said all of this, professionals should ALWAYS be involved. ALWAYS.
There are so many studies showing the extreme stress levels of parents of children with ASD's, LD's, and MI's....which I can post in the tot's to teens forum. The number 1 cause of stress and even depression is lack of support and understanding from schools.....That right there could be a connection since AL had been to several schools and was homeschooled for some time. I'm not critisizing teachers by saying this. Often their hands are tied by the system, but others really have no interest in understanding the issues or supporting the child.
The quality of teachers make a huge difference in the lives of these children.
Laws vary, but even if you have a ton of money, in many places you cannot personally pay for an aide to be with your child at school. Your child is only entitled to what any other student is entitled to for any specific dx.
~Off my soap box~
Back in thread 6 there was talk about the damage of the bullets into the carpark. This is a pic of one of the cars.
