I'm so frustrated taking my autistic son out in public.

[Ilsa]

I never know when he is going to be a real mess. Today. I took him to the grocery store and allowed him to pick out a treat, but not to eat until we get home (that's okay with him).

Then he started doing stuff like taking off his shoes, sitting on the store furniture and acting like he wouldn't leave with me. I finally had to turn over the chair and drag him to the checkout, where he layed on the floor until time to leave. I had two small bags of groceries that I had to set down because he sat down on the floor again, making odd noises and getting into peoples' way. He's almsot ten, so he obviously looks too old for this behavior. I kept trying to motivate him to leave with offers, then loss of priviledges.

I finally had to lift his 75 pound dead weight carcass off the floor and over my shoulder to carry him out. I weigh only about 2x as much, so it is a sight. I asked a grocery store employee who walked by me and laughed for help but he kept walking. I finally screamed out loud for someone to help me with my groceries instead of IGNORING me.

Jeezuss H, does a person have to be in a wheelchair, drooling and spitting or vomiting for people to offer to help? I am so damn mad! Sometimes, we ave to take him out. He needs to learn how to behave in public and know what to expect. He didn't hurt anyone or anything. He didn't destroy any of the produce or spill or break anything. But the people in the store treated us like we have the plague or leprosy.

[Deja Q]

1. I genuinely feel sorry for you.

:hug:

And your son.

And our 'society' for not helping others. (people in wheelchairs, droolers, spitters, et al are also ignored - often by fear and/or worry.)

[Ilsa]

14. You are right. They are usually ignored, but not by me, unless I have my

disabled son with me. Today, I was three minutes away from leaving a hospital room where I was setting up med equipment for a new mom, and her grandmother using a walker came in with family. I stopped what I was doing, cleared a path and a place for her to sit down instead of finishing what I was doing, even if it meant starting voer. Safety first.

I can't sew any more while he is home, because he gets into my stuff and cuts up fabric and spools of tread and messes with my machine. He is in the shower now, stimming on the water and I am taking a break from im.

[Midlodemocrat]

2. How severe is his autism?

Is he verbal? Do you take him out often?

Reason I ask is that some autistic kids can't bear the *noise* factor of stores, the music, the people talking, etc and perhaps that is what set him off.

I feel for you. One of my friends has an absolutely adorable 7yo with severe autism. He will throw a tantrum as quick as look at you because since he is non verbal, he gets very frustrated very quickly. People don't know how to react, so they just try to ignore it.

[Ilsa]

7. Mildly verbal when he wants to be. That's why we are engaged

in ABA training.

Yeah, the noise may have bugged him, but e has been there several times before without acting up like he did today. aND IF IT WAS BOTHERING HIM, SHE SHOULD NOT HAVE ACTED LIKE HE DIDN'T WANT TO LEAVE. Sorry, I hit the caps key and don't feel like retyping. He just wanted to give me a hard time, and I can't ignore him in public without actually imperiling him.

We try to get him out for community awareness, training, etc wenever he seems to be in a good mood for it, as he did earlier today, so I tried it. Now his outing privileges are suspended.

[Midlodemocrat]

9. Does he comprehend that his privileges have been suspended

because of his behavior today? My friend's child has no concept of consequences which is particularly frustrating. It's basically just walking on eggs all the time they are out and about to keep him from having an episode.

[Ilsa]

10. Yeah, "No donut!" or "No ___" does the trick almost 100%

of the time.

It is really difficult. On the one hand, the developmental pediatricians tell us you cannot assume he understands. The teachers trained in ABA and TEACCH and oter techniques swear that he is understanding more than we realize, that he is soaking in what we say AND its meaning. They see the results of that, as I have, when I keep my messages short and simple.

[Ilsa]

11. Getting out is important, because we have been in lockdown here

because he climbs over fences and runs off if left alone in the backyard for a minute or while getting into the car in the front of the house. I have chased him down the street, around two corners, and into someone's home, and only knew where to go because the neighbor kids on bikes were tracking him for me while I caught up with him.

Getting out is supposed to be good for all of us.

[riderinthestorm]

3. I would have helped Ilsa.

What a terrible story....
:hug:

At the grocery store I shop at, the baggers always ask if they can help me out, usually they ask me at least twice.

[Left Is Write]

4. Ilsa...

:hug:

[Bunny]

5. I'm sorry you went through that. I wish more people would have a

better understanding of autism and other disabilities.

[tigereye]

6. do you have behavioral support where you live?

there are folks who might be able to help you teach him to control himself in public a little better. Like Midlo said, a lot of kids get over-stimulated and crowded places can be overwhelming.

:hug:

[Ilsa]

8. Mildly verbal when he wants to be. That's why we are engaged

in ABA training.

Yeah, the noise may have bugged him, but e has been there several times before without acting up like he did today. aND IF IT WAS BOTHERING HIM, SHE SHOULD NOT HAVE ACTED LIKE HE DIDN'T WANT TO LEAVE. Sorry, I hit the caps key and don't feel like retyping. He just wanted to give me a hard time, and I can't ignore him in public without actually imperiling him.

We try to get him out for community awareness, training, etc wenever he seems to be in a good mood for it, as he did earlier today, so I tried it. Now his outing privileges are suspended.

[begin_within]

12. This might encourage you a little...

In our neighborhood, there is a man named Mark Rimland, who was diagnosed with autism about 45 years ago. Doctors advised his parents to put him away in an institution. They refused, and brought up Mark as normally as possible. Today he is a 50 year old man who walks around the neighborhood, and we see him frequently at the corner coffee house. He can carry on a conversation, but it is not really at a normal adult level, it's more like talking with an adolescent, but it is a conversation nonetheless. He is a professional artist who regularly sells his artwork and also does illustration for books. He has been featured in several documentaries about autism. His father Bernard Rimland (who just passed away about 3 days ago) founded the Autism Research Institute, also here in our neighborhood. Mark is living proof that autism doesn't mean a hopeless life. They can grow up to be productive and happy members of society.

[Ilsa]

17. I hope so. If they don't get hurt while growing up.

I was also afraid someone was going to call the cops on me. Not that anything would happen besides my frustration, but still, dealing with CPS isn't what I need.

[Ilsa]

13. Tanks everyone. Sometimes I need a little sympathy to keep from

going into the garage and taking a drill to my head.

[Cheney Killed Bambi]

21. You are a great parent

My cousin and his wife have a 6 year old with an aspberger's-autism type disorder (I don;t know the exact diagnosis), and it is so much work for them and so stressful when they go out in public because he acts in ways that are disconcerting to people who don;t know him. But he is such a sweet kid and they have such devotion to him that they are in my eyes two of the best people I know.

[China_cat]

15. I feel for you,

but using a wheelchair or a mobility scooter, I know just what it's like to become invisible (at least until somebody walks out in front of you and gives you a hard time for not getting out of their way) when you need something as simple as a door opened for you. If I'd been there, I'd have offered to put him in my lap and let the wheels do the hard stuff.

[Ilsa]

18. I've offered to reach up to the high shelves for scooter

folks in my grocery store, China. I hope it helps a little.

Thanks for the encouragement.

[China_cat]

20. It does. Just recognizing I'm there at all helps but doesn't

happen very often. And my husband always reaches the high shelves for the vertically impaired. (He's 6'5")

[SeattleGirl]

16. Sorry to hear about your experience, Ilsa.

People can be somewhat heartless sometimes. I think it is often out of fear of someone "different", and they don't know how to react, so they laugh, or point, or make fun of, or ignore that person and people in your situation. Not trying to excuse that behavior, just sayin'.

Sounds like you are working with folks that are helping your son and you, and I'm glad about that. As far as your frustration and such, come on in here anytime to blow it off. You will get plenty of support.

:hug:

[blondeatlast]

19. My heart goes out to you. The stares are the worst.

My kid has been known to throw major tantrums and I've had to deal with him physically in much the same way. I've been mildly accused of abusing him under these circumstances. Not so--he just has to learn that it's not acceptable to behave that way in public.

Once a very kind woman simply offered a sympathetic word about my predicament and I almost cried. Bless that woman. I hope I can pay it forward.

Had I been there, I'm pretty sure I would have at least offered you that much, if not more. Take care--I've been in a similar situation and I know a little about what you went through. :hug:

[Ilsa]

28. Thanks. Those tantrums from a 9 yo are horrible.

And I understand the stares. They figure te parenting created it. They have no idea.

[QMPMom]

22. Oh Ilsa, I am so sorry that you are going through this.

I have been where you are and know it is not easy. Our DD is mentally handicapped with autistic tendencies. She's now 20 and while the worst episodes were when she was younger, we still have behaviors to deal with in public.

Do you have access to any support services that may be able to work withyour son and take him on outings for him to learn proper public behavior?

One thing we were told, and it is true, is that Mom and Dad sometimes need to be the soft place to fall, and not the teacher all the time. We certainly found that to be true. Our DD would pick up some things much better from others than she did from us.

We had her in Early Intervention when she was 2 1/2 and she now goes to an adult day program. Children with issues like our children have never stop learning. It's a lifelong process.

I would ask the teachers if they have any info on out of school programs that your DS could be involved in.

He probably would love it and you need the break.

:hug:

[Ilsa]

30. There isn't anything left at the end of the day for the ISD to offer.

I mean money or personnel. The school district has a hissy fit over providing what they are legally required to provide.

We ave a support group in town, but frankly, I haven't had the time to attend because of everything I have to do during the day plus the occasional little bit of money I make on the side (a deal I need for myself -- to maintain some professional status as a nurse as well.) And we are busy helping our second grader with his homework every night. I don't need more stuff to do; I get stress relief from my sewing and other things.

I tink I get a little disturbed when tv shows these autistic kids as small children that are helpless and sweet and cute. Te audience reaction is "That's not so bad," or "You are blessed have such a lovely child." They rarely show them as preteens or young teenagers obsessed with body parts or tantrumming or other realistic and difficult behaviors, or that families end up prisoners in their own homes.

[Sanity Claws]

23. I'm sorry to hear this

Thank you for posting this. It makes me aware of this kind of problem and that you may want help.

[NC_Nurse]

24. I'm sorry and I know how it is from a slightly

different perspective. My brother is autistic and when we were growing up in the 60's and 70's autism was even less well known
and their were very few services available. My brother used to have big fits at the grocery store or wherever we went. It was awful.
Other kids were weirded out by him, even when he was being relatively well behaved.
It was quite the stressful way to grow up. My parents could have put him into an institution, but they didn't and today he functions pretty well.
He works in a grocery store now and has learned to keep his tantrums under control. He can carry on a conversation. He's a little less repetitive than the
character in Rain Man, unless he's really obsessed with something.
My son has Asperger's, but it's really mild in comparison - thank God. I don't know if I could cope with the same thing all over again. Are there any group
activities in your area for autistic children? The Autism Society of NC has all kinds of things going on here. TEACCH was started here and is based at UNC so
that has brought many families here from all over.
I'm sorry nobody pitched in to help you today. I think most people don't know what the problem is or how to help. So they just feel uncomfortable and rush away.

:hug:

[Redstone]

25. I hope that your post helps someone understand next time they see that. It certainly did

make me resolve to THINK next time I see something like that.

Thanks for the wake-up call.

Redstone

[BarenakedLady]

26. Oh no I'm so sorry

That sounds incredible difficult. I never know the correct way to respond to those situations. On the one hand, I want to reach out and help. On the other, I don't want to be intrusive. You just never know what the reaction will be.

:hug:

[marzipanni]

29. That's how I feel, too. I think next time I'll ask,

"need some help?" so the person doesn't feel ignored, but I don't feel too intrusive.

[Hibernias Daughter]

27. I am so sorry for you.

You have a right to be mad. But I hope it's at the company itself and not at the (probably) minimum waged, HS or GED educated, minimum wage (or barely above) paid workers. I doubt many have the skills to deal with their own issues let alone an autistic child's. And furthermore, if it's a physical situation such as you described it's possible that they were not even allowed to intervene for insurance reasons (or other) even if they wanted to.

Again I am so sorry for you. There is no easy way to cope with this. Would your insurance allow for extra care so you can at least have a breather? I wish you and your son the best.

[Ilsa]

31. I can't even get the insurance company to be reasonable

about paying for his speech therapy, much less respite care.

I take my respite mostly during the day, but I also do occasional work (related to my nursing license) for 2-3 hours a day for my sanity, and I sew for personal distraction.

We are using the ABA program, BTW.

[Hibernias Daughter]

32. This is where your Reps and Senators come in

Call them! Better yet, organize a phone in campaign with other parents with similiar problems. If enough of you band togethor and make a rucous, the WILL listen.

Good luck and God Bless

:hug:

[Ilsa]

34. I did, six years ago. I couldn't get anywhere with Ron Paul or

our local state reps (rethuglicans). I finally threatened to sue and cited a case where the jury found for th family.

[Haole Girl]

33. I'm so sorry you have to go through that, Ilsa!

While I have no experiences or advice to share, I just wanted to say I admire your strength...and offer you hugs... :hug: :hug: :hug:


edit: typo

[CornField]

35. I can't relate -- no personal experience to draw from, but, if it helps

I have a good friend in Portland who has an autistic son and her complaints/rants/whatever you want to call them are exactly the same as yours. It is because of people like her and yourself that I don't stare and walk away anymore.

Keep taking him out. Quite frankly, it isn't you or him -- it's folks like me who just haven't a clue how wonderfully easy our lives truly are.