mortisha69

oh dear... I hated that with my son, when we first tried meds and then when they suggested increasing dosages.. luckily, we realised last time it was the increase of one med and reduced it and all (cross fingers as I'm saying this) has been really good... he is on melatonin 3 mg- no increases- Risperidone 0 .25mg (it was this increase he had so many problems with and was reduced back to 0.25mg) and equasym XL ( he has ADHD as well) this has been slightly increased once, slightly since he started them. it's the "hanging in there" part that's the hardest and I honestly feel for you... that last increase, for my son was horrible, he also woke up angry and took him along time to be fully awake.... so I sorta understand how you feel, though I could never fully understand it... though I have to say really, practically, if these meds are creating so much turmoil, maybe you need to contact whomever responsible in regards to your Review appt and request an appointment sooner then the end of this month.... We did for my son... we couldn't wait the any longer- it was affecting too much for him. just a thought? but maybe you should contact them?? hope things get better and easier very soon, Darkshine...

thanks Jb...

Katherine, I respect your honesty, I'm sure a lot of parents feel this way. I know my mother did. she had many expectations of me and I felt them growing up.. I also didn't think I could meet them.. I was also adopted as a baby so therefore growing up felt it was almost " OK" that I couldn't meet my mothers expectations and in fact gave me the courage to go my own way... so when my husband and I had children, maybe it was because we were both adopted or my feeling my mother's expectations growing up, but I can honestly say we had No expectations.. while pregnant, I honestly never had a gender preference for our children. We used to joke that as long as the baby sorta looked like us, it didn't matter and honestly only wanted healthy children. So when our youngest was diagnosed, again, there was no "grieving" as some parents experience. we were actually revealed to know so we could then go out and get the support and knowledge to help him. He was healthy, he just has a condition and needs support.... I also think because my own disability "came out" , as it were( I have ehler -danlos syndrome) while I was pregnant, it prepared me a bit for his diagnosis.. and led me to have little to no expectations other then I want them to have happy and fulfilled lives, as every one else.. who they chose to be, what they chose to do- is up to them... Because I can't even compare to the "norm" myself, I guess it's not even a consideration to me in regards to my children.... plus, what's "normal " anyway!! LOL!! I just wanted to thank you for your honesty... again, I'm sure many many parents feel the same and couldn't say so...

baddad.... Sooooo well put! I left a forum a few years back... A DAN advocate basically told me point blank that because I had given my son the MMR shot, it was my fault he was autistic, and then basically told me that I was Abusing my son, literally and should have him taken from me because I had not taken him to a DAN doctor and started him on their highly restrictive diet ( never mind he was self limiting anyway due to hypersensitivity to smell/taste and textures).. and everything else they claim "cures" Autism... I never received such a tirade of abuse from someone who was "autistic-ally Aware" as it were, normally that kind of abuse comes from the ignorant.. it was a real wake up call. A complete shock. I now avoid anything to do with that side of it all. ( I see no reason to even debate it as it often can turn So nasty because of the emotions involved) Do not even get me started on Jenny McCarthy and the whole "age of Autism" brigade...( the lovely DAN advocate loved and pushed the website and group Constantly).... I do not see the "epidemic" that is being claimed....(having researched the history of autism, I have a better understanding now) I do not see my son as a tragedy, my life was not destroyed when he was diagnosed. He brings me a whole new way of looking at the world and the best sense of humour... I wouldn't change him for the world... I am here to help, support, guide and make his life a little easier if I can, navigating the world.. but more importantly to raise awareness, to make the world He lives in a better place... so he can have a fulfilled life, like any one else...

I completely and totally agree... I also would like to point out, (from experience, I am a mum of a young boy on the spectrum and I currently work in a local mainstream infant school specifically as a one to one support with children on the Spectrum)... just as every child is different, so is every child on the spectrum and "their autism" presents itself differently... In my experience there is no "One" therapy that "works" and in fact it is a mix of therapies and ideas that "works" in reality. I use everything from elements of ABA (with enforcers only, never "punishments"), TEEACH, PECS, Makaton, visual aids- prompts and a variety of other "techniques and ideas" including just common sense and experience... my son and the many children I have worked with over the years are a testament to that...

Darkshine, Philipo, how's it going with the melatonin?? also if it helps, my son has his prescription through his psychologist/psychiatrist (educational) but I'm sure CAHMS can prescribe as can any psychiatrist... It is more readily available in the states... Please be very careful getting it through the internet, I really strongly advise against it... you can get it on prescription in the UK- ask your GP.. hope all is going well and you are both getting restful good night sleeps.. all the best

Hi. Jb, what is the genetic condition your daughter has, if you don't mind me asking? I have EDS as does my son who is on the Spectrum and also co-existing conditions ADHD, PTSD, OCD and I know they believe there are links between ADHD/ADD and autism, and now lately maybe a link between EDS/HMS and Autism.. I'd like to know more about that research and any that are linking all the conditions mentioned... ( I'm hoping to start my degree shortly) thanks.