children with chemical embalances and neurological dissorders
March 17, 2007 7:38pm CST
I am a single mom of 5 year old twin boys. one year ago one of my boys was diagnosed with tourettes spectrum dissorder (a combonation of ADHD,OCD,anxiety,deppresion,tics,developmantal delays etc...) My issue is this...I am so tired of people judging my parenting but most of all assuming that he is a bad child. Sometimes I wish society would pay more attention to these kids and do more to help them. It frustrates me more than anything else in the world. I wish others could see him the way that i do...He's just a little boy!
• United States
29 Mar 07
Hi, Sparling! Come on over to the autism discussions - boy, can we relate! :-) My daughter used to have meltdowns anytime we tried to take her anywhere. I would just persist and go get done what I needed to do, but my hubby would just put her back in the car and we would go home. He would never have gotten anything done! LOL Anyway, in my research about my daughter's autism (PDD-NOS), I found a handbook for high functioning children with autism at a Barnes and Noble store. The book contained cards called, "Don't look at me that way!" cards for parents. I know how you feel, knowing that people are thinking you're a terrible parent or need to "get control of" or "spank" your child when they have a problem in a store. I learned that with autistic kids, it can also be sensory issues, like lights and sounds, causing meltdowns. The cards state, "My child is on the autistic spectrum. For more information, visit www.austism.org" They are reproducible and are designed to be handed out to those people who like to tell you what to do in those situations but really have no clue that it is not something your child can control. I don't see why you couldn't modify it for your child! Yours could state, "My child has Tourettes Syndrome... " and list a website where the person can learn more about it. Instead of putting up with people staring at you, just smile and hand them a card. End of issue. :-) I have no doubts that you are a terrific mom! You are compassionate and realize that your son is not in control of his behaviours - he's not doing it to annoy anyone, he can't help it! Your support and advocacy for him will help him more than you know! :-)
29 Mar 07
That is the greatest thiong i've ever heard i think! and i WOULD do it. im just sick of it. you know what i mean? i've gotten to the point wher i tell people off because of it etc...my brother and i got in a fight on xmas day. Jordan was overstimulated majorly and the explosive behavior was kicking in, my brother told him he was a baby etc,etc, i was trying all day to maintain my composure then i lost it. but it wasnt any good for jordan. so anyway....yeah thats a wonderful idea thank you so much
• United States
29 Mar 07
You're very welcome, sweetie! Sometimes our own families can be an obstacle. My sister wouldn't believe that my daughter had any issues until just recently, and my inlaws never believed it. Sometimes you just can't make them understand! One of my best friends has a severely autistic son (he's non-verbal) and gets the same treatment if he has a meltdown in a store. I completely understand how you feel! :-)
28 Mar 07
Hi sparling, I'm so sorry that peole are so awful! Our children are special in so many ways and people inwho judge them have no idea, the sun shines golden for those who can judge, from their perfect lives. I used to worry what people thought and sometimes feel like the worlds worst mum. Restaurants used to terrify me, but now I think I will probably never see these people again so why be stressed and bossy to my boys just for other peoples happiness, ok I'd pull them into line if I had to but I let far more go now than I used to. My 7 year old has Autism (ASD), ADHD, Dyspraxia, nocturnal enuresis (wetting), occassional stress wetting but they now feel the tics - head, hand shaking etc may be self stimulation due to the ASD, so that one is on hold and fingers crossed will stay that way, although there are worse things than tourettes, I'm not worried yet anyway, you are right they are still little why should people hang labels and not give support.
28 Mar 07
It feels nice to talk to other parents who experience the same things that i do...i think this is probly one of the first times i've spoken with someone who also has a child somewhat like mine...wow its about time! He has recently begun having terrible night terrors wich i always thought were bad dreams but its far different, the thing with jordan is he lets go of one thing and picks up another. His tics had completely stoppped for 6 months,it seemed like when he stopped the obsessive hand washing he started ticking again. Does your son do this? change patterns frequently. I've become stronger and i try not to let other people bother me yo much...but as you know its hard to hold your tung sometimes with those who dont understand and dont want to understand. thankyou so much for posting
7 Apr 07
I'm so sorry Jordan has night terrors, you're right it's far worse that bad dreams, I've had them at very stressful times and Bong used to. Jordans done well to stop handwashing as it's difficult - my bathroom had a constantly wet floored stage. We are now sucking clothes again, we had a patch of it a year or so ago, he can make the whole t-shirt front or sleeve soppy wet, his collar, his coat sleeve, other kids are noticing, but in a couple of months he'll be onto the next fun (and annoying self-stimulating) thing. I'm so glad you are becoming stronger where other people are concerned - they don't know you or your child so are not in possession of the facts or in a position to judge, it is hard not to feel insulted and aggressive, I have been known to get out Bongs Autism card and say - don't you think he's doing well a lot of kids have bigger problems, thank you for your patience of things like that, especially to people who feel I should be controlling him more strictly, I hate when they comment, tut or sigh but I am gradually learning to ingor it.
18 Mar 07
I want to thank you for your encouraging words, it always helps to talk to people like you who seem to understand. Or at least try to. Life with jordan is very trying at times and at a moment like this I feel like I am re-energized for the next challenge.
• United States
20 Mar 07
I understand my 4 year old has Epilepsy and possible cerebral palsy. She gets angry easily becasue she can't do what her friends can in school. And in the stores people just look at you like you have no control over your kids and that they are bad. People need to stop I don't want her to grow up thinking she is abnormal.