Exhausted from parenting/ASD children/Welcome to Schmolland!

[lovethattink]

I work in a school and just this morning I had a similar conversation with one of our 11yo Aspie kids. She had thrown up and I called her mom. The girl asked me if I knew what her mom looked like. I know her mom, but I asked the girl to describe her. This is what she said:

"She has brown hair, some eyes, a nose and a mouth. She wears a dress or some pants and a shirt. And she has a purse. Do you know her?" Why, yes.Yes, I believe I know that woman.

That's interesting. I just asked my 6 year old how he would describe me to someone. He said beautiful, and sometimes our house smells like cookies.

DS18 is like that. He'll ask me about something and will start off with "you know, that place?" It takes a lot of time to be able to figure out exactly what (or sometimes who) he's asking about. Sometimes it really is about "that place" and other times its a thing or an event. It takes a long time to get there though!

DS10 is wired a little bit differently. He can't recognize or process patterns, so for him everything is a stream of consciousness guessing game. I try colors, sounds, or smells and they all come out jumbled. With him you just have to wait for it.

He starts off with the name of some basketball player that I don't know and then it will segue into an event that happened when he was with his dad, and will finally end up with what kind of cake they had at his friends birthday party.

Gotta love the way the brain works!

 

[Ultra violet]

Come to think of it, DS10 (almost 11) has a very different way of recognizing people. For him it's hit or miss. So, he can point out a person long before anyone else or just not at all (like the Speech Therapist we saw at least once a week for 3 years when we saw her away from her office). When I asked him to explain how he knew long before the rest of us, he said that that person had "a funny walk" or a different "way" about him/her. When I asked why he didn't know who the Speech Therapist was at Wal-Mart, he said it was because "She wasn't in the right place". He has poor eye contact, so I think he may just be holding on to distinctive details other than facial features if he can't rely on context. Now when it comes to remebering where, the kid is a human GPS. I literally find myself lost when I don't bring him shoppng with me because I have to ask him to find my car! I'm sorry, the parking lot is an absolute "corn maze" for me. As for "when" questions I get, do you remember the september 2 day in 2003 when(...) but when you ask him what did you have for breakfast, he'll look at me and give the famous shrug and "Idunno".
So hopefully, being in the "Disney context" will help help him if we divide experiences to be remembered up by "Theme park", for him. For me, thank godness he will be there as far as navigation goes....otherwise we'd wind up in somewhere in New York facing the Statue of Liberty before I even make the realization "Okay, I think we may have the wrong left....somewhere "

 

[ppony]

Hi guys!
I'm sorry I don't get a chance to follow the thread (With all my DS3's therapies and my own night shift here in the home to keep food on the table), but I know you are all here and it's comforting. I'm not sure if this has been posted before or even if it's allowed, but a friend sent me this link today. It's inspiring, but right now, since my son is only 3 and a half, I'm petrified. I never allowed msyelf to realize nor accept that he autism could keep him from ever communicating verbally. I always felt it would come, eventually. ANd I know it might but the reality that it might not is hitting hard.

Have a gander if you haven't seen it already.
http://youtu.be/a1uPf5O-on0

 

[kaffinito]

Come to think of it, DS10 (almost 11) has a very different way of recognizing people. For him it's hit or miss. So, he can point out a person long before anyone else or just not at all (like the Speech Therapist we saw at least once a week for 3 years when we saw her away from her office). When I asked him to explain how he knew long before the rest of us, he said that that person had "a funny walk" or a different "way" about him/her. When I asked why he didn't know who the Speech Therapist was at Wal-Mart, he said it was because "She wasn't in the right place". He has poor eye contact, so I think he may just be holding on to distinctive details other than facial features if he can't rely on context. Now when it comes to remebering where, the kid is a human GPS. I literally find myself lost when I don't bring him shoppng with me because I have to ask him to find my car! I'm sorry, the parking lot is an absolute "corn maze" for me. As for "when" questions I get, do you remember the september 2 day in 2003 when(...) but when you ask him what did you have for breakfast, he'll look at me and give the famous shrug and "Idunno".

I have to laugh at this - that is so me! A few years back I went Christmas shopping at Toy R Us. This woman saw me, called my name, and began talking to me. Well I was horribly confused and embarrassed. I had absolutely no clue who she was.

Well finally she stopped talking and said - "Karen - don't you recognize me?" I had to mumble an embarrassed apology and admit that no, I had no clue. Then she said - "Karen - it's Diane!"

Well Diane was my best friend - I saw her Monday through Friday for five years! But all I could think of to say in response was "But you're not in the right place!"

Thank God she understood that - two of her older brothers are ASD so I guess she was used to it.

Now I'm a little more used to it - I tell people that I don't know who they are unless they're where there supposed to be.

 

[Ultra violet]

In retrospect, I think the hardest part of dealing with my son's ASD was when he was little. The "not knowing if he would ever__" used to just eat away at me. Speech/communication is his biggest hurdle. With time, I was able to drop the expectations that are linked with "the typical age that milestones are usually attained" and celebrate when "he" would reach them. Don't get me wrong, we always continued working on specific goals with him, just stopped focusing only on what he couldn't do and focused more on what he did well, sometimes even better than other kids his age. Now, I'm very thankful that he can put a few words together and he is better able to express himself (he's almost 11 now). His speech is nowhere near what is should be, or what I would've wanted it to be way back when, and he still has many goals to reach, but he still has a lifetime to learn. No rush.
Thank you for sharing the link. A friend of mine's child reminds me so much of Carly. I'd bet she'll totally appreciate this link and find some hope in it too.

 

[minkydog]

Well, I just got a bit of unsettling news. Our county has a special needs summer day camp that Christian has been attending for 8 years. Today I found out that it may not be funded this summer. When Christian is out of his routine he gets destructive (like throwing dishes), starts having bad behaviors(like pulling his pants down in public or sitting on people), and generally just being a PITA. Summer camp makes all the difference for him. If we dont' have camp, we are going to be in a world of hurt. I'm just saying...

 

[Kat77]

Well, I just got a bit of unsettling news. Our county has a special needs summer day camp that Christian has been attending for 8 years. Today I found out that it may not be funded this summer. When Christian is out of his routine he gets destructive (like throwing dishes), starts having bad behaviors(like pulling his pants down in public or sitting on people), and generally just being a PITA. Summer camp makes all the difference for him. If we dont' have camp, we are going to be in a world of hurt. I'm just saying...

I'm so sorry Minky.

I've been waiting for that announcement here with our state budgeting issues.

 

[lovethattink]

Hi guys!
I'm sorry I don't get a chance to follow the thread (With all my DS3's therapies and my own night shift here in the home to keep food on the table), but I know you are all here and it's comforting. I'm not sure if this has been posted before or even if it's allowed, but a friend sent me this link today. It's inspiring, but right now, since my son is only 3 and a half, I'm petrified. I never allowed msyelf to realize nor accept that he autism could keep him from ever communicating verbally. I always felt it would come, eventually. ANd I know it might but the reality that it might not is hitting hard.

Have a gander if you haven't seen it already.
http://youtu.be/a1uPf5O-on0

I will check out the link, thanks. My son is verbal, but I keep getting links sent to me about applications for the Ipad for autism and communication. Many look very promising!

In retrospect, I think the hardest part of dealing with my son's ASD was when he was little. The "not knowing if he would ever__" used to just eat away at me. Speech/communication is his biggest hurdle. With time, I was able to drop the expectations that are linked with "the typical age that milestones are usually attained" and celebrate when "he" would reach them. Don't get me wrong, we always continued working on specific goals with him, just stopped focusing only on what he couldn't do and focused more on what he did well, sometimes even better than other kids his age. Now, I'm very thankful that he can put a few words together and he is better able to express himself (he's almost 11 now). His speech is nowhere near what is should be, or what I would've wanted it to be way back when, and he still has many goals to reach, but he still has a lifetime to learn. No rush.
Thank you for sharing the link. A friend of mine's child reminds me so much of Carly. I'd bet she'll totally appreciate this link and find some hope in it too.

That's great advice to focus on what he can do and not on what he can't do! I am coming to terms that it's going to be in his time that the accomplishments occur.

Well, I just got a bit of unsettling news. Our county has a special needs summer day camp that Christian has been attending for 8 years. Today I found out that it may not be funded this summer. When Christian is out of his routine he gets destructive (like throwing dishes), starts having bad behaviors(like pulling his pants down in public or sitting on people), and generally just being a PITA. Summer camp makes all the difference for him. If we dont' have camp, we are going to be in a world of hurt. I'm just saying...

So sorry minkydog! Here's hoping for some last minute funding, or another camp opportunity to open up for him!

I'm so sorry Minky.

I've been waiting for that announcement here with out state budgeting issues.

I hope the announcement is good news not bad.

 

[Ultra violet]

Dealing with no camp here too. We're waiting on Respite funding to kick in so we can at least have him in camp for one week with a worker...somewhere. Hope something works out for you Minkydog.

 

[Ultra violet]

I'm really glad I stumbled onto this thread! Really nice group

I have a question to ask all of you. Has anyone brought a respite/spec.needs worker with them? I was just looking for advice about how to pay them, what her responsibilities would be ect... How to find one that would come to Disney with us.

 

[blondietink]

We have had the funding for respite for years. However, both our workers quit the agency they worked for and we have been without a respite worker since right after Christmas. So, the state is probably going to get my unused hours back. I keep getting excuses from the agency on how they can't find anybody to take the job. With 11 % unemployment in this county, I would think they could find somebody. Maybe if they paid them more than $8.00 an hour it would help. Especially since they get over $14.00 per child per hour from the state when they take both of my kids at once. And don't give me that crap about including benefits in the hourly rate, as they only employ people part-time with no benefits. Can you tell I'm frustrated?

Good luck on finding somebody ... it would be great to have a helper at WDW!

 

[sl_underwood]

I have tried to keep up with this thread too but lately it seems I just havent done so. I keep meaning to read and post and never end up doing so. Being a mom to an ASD kid is extremely hard sometimes. I enjoy reading your posts and knowing that others get it. It seems that so few do. Today, we found out our ABA therapist is leaving. Definitely sucks for us. Luke, my 8 year old son with autism, has thrived with her and without her, I fear he will take a few steps back. He is already delayed so he cant afford those steps backwards. It always seems that when things start to get better, something goes wrong to set us back again. I keep hoping and praying, but sometimes, I wonder if anything I do will ever be enough for him and I wonder if I can do this all on my own as it seems that each time I find a little support, it rarely lasts.

 

[brat]

I pray all those waiting for camp get it.

I just gave up our camp slot back home.Since we are in FL now and will be here a while I felt I needed to let another family know they have his slot.

Still working on getting services hooked up here.

I know so many go by the Holland story, I end up useing the I welcomed a kid from another planet into my family.It helps me keep myself in balance and tell myself Foster son has the right to do things in his own time and that I have the right to keep trying to teach him to do more.Just because others from his planet can not do something does not mean he will not be able and if one does something he can not does not mean it will be easy for him to learn.

My Grand Aunts came in to be with us and where weirded out by Foster son not knowing who they were untill I showed him pictures of them.He said they were in the wrong place.

 

[sl_underwood]

I like that. Luke would think it was pretty cool to be from another planet. It also fits. My kids were adopted from foster care, Brat. I think it is great that you are fostering.

 

[brat]

Sl_underwood, all of my kids started as Foster kids.Glad to meet another Foster to adoptive Parent here.

 

[brat]

We joke around that his love of everything Star Wars is just a love home culture. His wanting his Star Wars stuff with him was to combat home-sickness.

 

[pls5286]

Well, I just got a bit of unsettling news. Our county has a special needs summer day camp that Christian has been attending for 8 years. Today I found out that it may not be funded this summer. When Christian is out of his routine he gets destructive (like throwing dishes), starts having bad behaviors(like pulling his pants down in public or sitting on people), and generally just being a PITA. Summer camp makes all the difference for him. If we dont' have camp, we are going to be in a world of hurt. I'm just saying...

Minky, check with Camp Twin Lakes in Rutledge, Ga. They might have a program for Christian. When I worked EMS, we did lots of work out there. Its a camp especially for disabled kids. They have a variety of camps running year round. Its a very nice place.

 

[pls5286]

Everyone please bear with me and help me along with advice, tips etc. While my ASD child will soon be 12, I am new to parenting him as he is technically my step-son, but I love him any way. His diagnosis varies depending on the doctor we see going back and forth from Aspergers to PDD.
He is also Bipolar, ADHD, ODD, and has Rage-anger syndrome.

When he is at our house, we see different types of behaviors than mom sees. Could it be different parenting styles. We don't allow the little kids (I also have a DD8) to watch anything over PG for the most part. He watches R at his mom's. No rated M video games and most T games are not allowed. Allowed at moms. He cusses his mom out and punches her. Not at our house. He is well behaved for the most part. We have had meltdowns, don't get me wrong, and some fits, cusses etc, but nothing like mom describes. The law of the land was laid down here. He follows the rules just like the other kids do. My other son is 14. All three clean up after supper. All three clean up their dirty clothes and toys, and their rooms. Yes ma'am, Yes sirs are expected here and he has caught on well.

His mom thinks we expect to much from him here. Do we? We treat him like a normal kid. Here he has learned to button jeans, shut a van door, make a sandwich, and start his own shower.

We socialize him, and he has overcome some of his social anxieties and he has participated in Vacation Bible School ant at the end even decided he wanted to do the program as long as I went on stage with him. It was his first time doing this. He participated in Cub Scout Day camp twice last year and did good. Once we figured out what was causing him to overstimulate and meltdown, the rest of the week went wonderfully. He has asked to do Day Camp and VBS again, so we are.

We have figured out that red gatorade/Koolade cause him major hyperactivity and aggression. Caffeine he doesn't get at our house.

One thing he does is feels alls his food with his fingers. No matter how many times we tell him to use a fork or spoon. Is this normal? He also eats incredibly fast. Like he is scared someone is going to take his food. A hamburger is gone in less than 30 sec.

As far as reprimads at our house we use the three strikes unless it is a major rule for all three kids. If he needs a time out he only gets 30 sec per year and usually only gets a time out for cussing or hitting not involving a meltdown.

If he starts having a meltdown either me or his dad take him in a tight hug and rock him until he calms down. This works wonders for him, but you can imagine the looks I got at daycamp sitting on the floor with my arms and legs wrapped around him when a parent walked in...kids were all outside.

This summer he is moving in with us. What do you advise. What do we work on? Anything to do. His dad works evenings, I am a SAHM.

Just an example, one night he got mad at me and decided he wasn't taking a shower, I gave him my firm mom look and said," DS is bigger than you, he will pick you up, and put you in the shower and bathe you." He quit his acting up, realized I was serious, got up and took a shower. At his moms if he tries...no shower. he has decided he hasn't wanted to go to school and just sat on the porch and waved at the bus because mom didn't want to sit with him to get on the bus.

 

[pls5286]

OK. Everything has been turned on its ear. We just got a call from DSS bio mom. They are being evicted DSS will be officially homeless by the end of the week. Well not really. DF and I are leaving as soon as we get the other two to school for the trip to get him and bring him here to live.

We were expecting him for the summer but not this fast. As far as what the other people in the house do as far as shelter we could care less. There are 6 adults and 1 child in that house and none of them work. They depend on DSS and his moms SSI to and Child Support to live on. This will really make our case to get custody much stronger! He will have structure here, and a bed to sleep in! Plus him and my 8 y/o are partners in crime!

 

[brat]

I know hard sudden move in can be. Very glad you were already planning for his arrival. Sounds like he fits with your parenting style and does better with more stucture.

My Foster son did the inhale his food thing everytime we had him till he is with long enough to calm down and not worry about food.I still do not know if someone was just touching his food or taking it from him.

He really likes our house rule of hand washing before touching food.

I think sometimes it is just easier for him to be our family with other kids that get the same reminders and rules.