Exhausted from parenting/ASD children/Welcome to Schmolland!

[NJMomma]

I guess I am the odd parnet out, summer is the recharge time for my DS10. No school pressure. We have several good camps that he likes (most days). One is a very good camp for special needs kids (of all types) and the other is a camp at the local natural history museum (his "real world" primary area of interest is dinosaurs). Also big family vacations (this year 2 trips to the outer banks).

Bookwormde

I am right there with you Bookwormde. I can't wait for school to be over. School causes so much stress here, summer is a welcome break. My son will attend a day camp for kids with mild to moderate special needs for 4 weeks, and we are going on vacation twice for a week each. My son's school (the middle school in our town) doesn't have a lot of experience with kids like him - kids that are high enough functioning to go that school, but still need help along way. I live a smallish town, I feel like we are trail blazing! In fact, when he started in September, the principal told me she was a little nervous about having him there! The teachers he has aren't special education teachers per se; he's in the resource room for every class and most of these teachers teach regular ed versions of his classes all day long. Most of his classmates have learning disabilities or ADHD. His teachers and aides often don't understand why he does what he does (who does really? ). This has kind of made it a rough year, but it's almost over!

 

[Brightsy]

Just a tired, worried parent tonight.
It's been interesting but lately my autistic son is the easy one to deal with.
Well, easier at least.
I'm worried about my DS11 (adhd and probably LD) going into the 6th grade. His organizational skills suck, his handwriting still really sucks, his self esteem is in the garbage can, and he doesn't seem to "get it" when we get upset that he... *sigh*
The other evening I sent him to take a bath.He does so. After a time I tell him to finish up so his little brother can take one, too. He gets out. I ask him if he used his soap and rinsed. He said, yep. I went to touch his head, it's bone-dry! And it still smells sweaty and sun-blocky! I tell him "You didn't shampoo and rinse." "OH I thought I did."
That did it! I got really upset w/ him. He FINALLY admits that he didn't use shampoo or even get his head wet. I send him to my bathroom to finish cleaning up. And he gets confused about why I'm upset w/ him. He's been lying now and then. Not always, but every now and then, and always about something small... like about shampooing. Or he "forgets" things! *throws hands up* And his grades are slipping... and...*pant pant*
Right now I could go for a nice simple little melt-down at the grocery store. At least I sort of know how to fix those!!!

 

[iwrbnd]

Just a tired, worried parent tonight.
It's been interesting but lately my autistic son is the easy one to deal with.
Well, easier at least.
I'm worried about my DS11 (adhd and probably LD) going into the 6th grade. His organizational skills suck, his handwriting still really sucks, his self esteem is in the garbage can, and he doesn't seem to "get it" when we get upset that he... *sigh*
The other evening I sent him to take a bath.He does so. After a time I tell him to finish up so his little brother can take one, too. He gets out. I ask him if he used his soap and rinsed. He said, yep. I went to touch his head, it's bone-dry! And it still smells sweaty and sun-blocky! I tell him "You didn't shampoo and rinse." "OH I thought I did."
That did it! I got really upset w/ him. He FINALLY admits that he didn't use shampoo or even get his head wet. I send him to my bathroom to finish cleaning up. And he gets confused about why I'm upset w/ him. He's been lying now and then. Not always, but every now and then, and always about something small... like about shampooing. Or he "forgets" things! *throws hands up* And his grades are slipping... and...*pant pant*
Right now I could go for a nice simple little melt-down at the grocery store. At least I sort of know how to fix those!!!

I feel your pain!!! I think the ADHD (poor organization, lack of self help skills, inability to self-evaluate or learn from past mistakes, difficulty completing tasks, etc) are the most exhausting traits I deal with! For me, the frustration and exhaustion just got worse as he got older. When he was little I always thought someday he would "get it". I remember the depression I felt when I had to deal with the same issues in high school that we dealt with in preschool! I don't want to discourage you, but to let you know I understand your frustration and fear as your son enters middle school! It has gotten better for us although the light bulb didn't start turning on until 16! He is 17 now and we still deal with a lot and I have my days where I think he will live in my basement forever, but he does shower without being told! (Big step for us!)

Hang in there! You're not alone! My ADHD child wears me out much more than my child with an autism diagnosis!

 

[bookwormde]

Just remember that just because a child does not "check enough boxes" for an autism diagnosis does not mean that they do not have the genetics, a majority of kids with an ADHD diagnosis are actually subclinical aspies, and need to be supported like all other kids with the pieces of the genetic set.

bookwormde

 

[iwrbnd]

Just remember that just because a child does not "check enough boxes" for an autism diagnosis does not mean that they do not have the genetics, a majority of kids with an ADHD diagnosis are actually subclinical aspies, and need to be supported like all other kids with the pieces of the genetic set.

bookwormde

I completely agree!!! Well said!!! My ADHD child has an "aspergers probable" diagnosis. He's super high-functioning and probably only got that diagnosis because I'm so aware of child-development that I was able to tell the doctor all the red flags. I like the way you put it "subclinical aspies". I'm so glad you are on this thread! I'm learning a lot from you!

 

[toodycat]

Brightsy and IWRBND---My son has lacks good organizational habits. It becomes really apparent when it's a class where he doesn't have a push-in special ed. teacher. Last summer, I was able to take him for executive functioning lessons given by a social work intern. He doesn't do everything she taught him, but since the sessions, he does write down his homework clearly and consistently. He can usually keep track of when he has tests, too. I don't know if there is anything similar in your area, but it definitely helped. I think he affected his self-esteem positively in that now he feels more in control.

 

[iwrbnd]

Brightsy and IWRBND---My son has lacks good organizational habits. It becomes really apparent when it's a class where he doesn't have a push-in special ed. teacher. Last summer, I was able to take him for executive functioning lessons given by a social work intern. He doesn't do everything she taught him, but since the sessions, he does write down his homework clearly and consistently. He can usually keep track of when he has tests, too. I don't know if there is anything similar in your area, but it definitely helped. I think he affected his self-esteem positively in that now he feels more in control.

That's a great idea! I've paid for a tutoring class that taught organizational skills but it didn't help. It was geared toward NT kids, though. Now, in high school they are working on this with my son but I wish I could have done something sooner. The executive functioning skills (or lack of, in our case) is the hardest thing to deal with! If there was a special class just for EF I would take it. We live in a small town and there isn't much offered. I'm glad your son is doing better with organization!

 

[ppony]

Was not sure where to share this but did not want to start a new thread. I was reading the disability section of all ears and there was a statement about AS kids loving wave pools at waterparks b/c the deep pressure stimulation it provides. What a neat observation, I never thought about it being sensory related! I have to drag DS9 out of the wavepool at our local waterpark all the time and we literally tag team my friends kid to get him out of the lazy river where he will spend hours walking against the current. Does anyone else notice this with their kids?

Well this is as good of post to prompt my jumping in to the thread as any. I apologize in advance for just unloading. It's been a long road and sadly I'm only at the beginning which depresses me even more and I have had no other parents that relate to talk to. We just realized within the last week that water seems to be one of the only motivators for my DS2 to get him to follow any type of directions or even attempt to communicate w/o turning away from us.


I just found this thread today. I'm only on pg 18 but I thought I'd jump in and say "hi". I'm a mom of a DS10 with ADD (though so easy to manage compared to the young one) and DS 2.5 submerged in ASD. It doesn't help that I have serious depression problems and have to take meds or I get really dark thoughts (only about myself). I've gone through the hope and sadness roller-coaster just in the few pages I've read on this thread. Yes, my DS2 could be much worse, but it doens't make my feeling completely lost and hopeless feel any better in the moment. And for some God awful reason, I was craving a companion to hug and just want to be around me that I got a puppy a month ago. Yeah, not a good plan when I can't handle hat I already have on my plate. Did I say I'm not the brightest bulb on the tree these days?

I'll basically talk about my youngest becuase my oldest I consider to be a dream child comparativly speaking. Ad DS 10 is SO loving and sweet, it's easy to forgive him pinging around like a ping-pong ball w/ no common sense. DS2 is not talking, I was hoping someday he might but fear after reading part of this thread, he may not? He only tolerates a moccasin sock type shoe on his feet right now. I can't put ANYTHING on his head. He eats very few things and most are crunchy. We are doing speech and OT therapies twice a week and the county sends a teacher once a week and a OT once a month during the school year. That ends tomorrow and won't pick up until Sept again. He's had his hearing evaluated but they want to do a more in depth one which required him to sit still w/ things in his ears. Um....a 2.5 year old in general won't do that and you want my autistic son who fears most people and is a barnacle on my butt (but I love him) most days to do that? Yeah, not happanin'. He cries, loudly every time I leave his sight (and lately for my DH as well). Even if it's only going down stairs. He's always done this and it's not getting any better. The therapists want me to do the intensive brushing of his skin and joint compressions every 90 minutes. I need to wear an alarm because I simply can't remember that more than 3-5 times a day. But he does like it.

I'm trying to find a group I might be able to meet w/ of other parents that understand and have the same issues. I haven't found one yet. I'm overwhelmed with how many things I'm supposed to be doing and reading, and listening to and..... you get my drift. I'm grateful to be a SAHM but I do have to bring in $ so I do artwork after the kids are in bed. That unfortunately leads to lack of sleep.

So that's my quick synopsis. *sigh* More than you needed or wanted to know.

I know there is SO much more and I'll continue reading the thread when I get moments here and there. Thanks to you guys for sharing and making my lonely world feel a little less desolate. I'm in awe at much of your guys' strength and patience. Simply in awe.

I'll keep reading now.

 

[kampfirekim]

Nope, you did not miss anything, it's a long, crazy story so I did not elaborate. Plus, it is really stupid!
DD11, mean girls, unaware teacher who won't return phone calls! It's the last week of school, yet I still get to deal with stupid .... I'm tired of stupid!

Good to know! I thought I'd really lost it for a minute there....or at least had one SERIOUS BFF! You just go right ahead and get mean if need be! I think we all get tired of stupid!

I guess I am the odd parnet out, summer is the recharge time for my DS10. No school pressure. We have several good camps that he likes (most days). One is a very good camp for special needs kids (of all types) and the other is a camp at the local natural history museum (his "real world" primary area of interest is dinosaurs). Also big family vacations (this year 2 trips to the outer banks).

Bookwormde

I'm with you bookwormde! Both of my boys seem to recharge during the summer without the stress of school. We still maintain private OT and ST for DS through the summer so that helps a lot. I have registered both DS's for a week long day camp for kids on the spectrum and their siblings. It starts on Monday. This is the first time I've given this sort of thing a try. This particular camp came highly reccommended from several sources. Hope it is successful!

Well this is as good of post to prompt my jumping in to the thread as any. I apologize in advance for just unloading. It's been a long road and sadly I'm only at the beginning which depresses me even more and I have had no other parents that relate to talk to. We just realized within the last week that water seems to be one of the only motivators for my DS2 to get him to follow any type of directions or even attempt to communicate w/o turning away from us.


I just found this thread today. I'm only on pg 18 but I thought I'd jump in and say "hi". I'm a mom of a DS10 with ADD (though so easy to manage compared to the young one) and DS 2.5 submerged in ASD. It doesn't help that I have serious depression problems and have to take meds or I get really dark thoughts (only about myself). I've gone through the hope and sadness roller-coaster just in the few pages I've read on this thread. Yes, my DS2 could be much worse, but it doens't make my feeling completely lost and hopeless feel any better in the moment. And for some God awful reason, I was craving a companion to hug and just want to be around me that I got a puppy a month ago. Yeah, not a good plan when I can't handle hat I already have on my plate. Did I say I'm not the brightest bulb on the tree these days?

I'll basically talk about my youngest becuase my oldest I consider to be a dream child comparativly speaking. Ad DS 10 is SO loving and sweet, it's easy to forgive him pinging around like a ping-pong ball w/ no common sense. DS2 is not talking, I was hoping someday he might but fear after reading part of this thread, he may not? He only tolerates a moccasin sock type shoe on his feet right now. I can't put ANYTHING on his head. He eats very few things and most are crunchy. We are doing speech and OT therapies twice a week and the county sends a teacher once a week and a OT once a month during the school year. That ends tomorrow and won't pick up until Sept again. He's had his hearing evaluated but they want to do a more in depth one which required him to sit still w/ things in his ears. Um....a 2.5 year old in general won't do that and you want my autistic son who fears most people and is a barnacle on my butt (but I love him) most days to do that? Yeah, not happanin'. He cries, loudly every time I leave his sight (and lately for my DH as well). Even if it's only going down stairs. He's always done this and it's not getting any better. The therapists want me to do the intensive brushing of his skin and joint compressions every 90 minutes. I need to wear an alarm because I simply can't remember that more than 3-5 times a day. But he does like it.

I'm trying to find a group I might be able to meet w/ of other parents that understand and have the same issues. I haven't found one yet. I'm overwhelmed with how many things I'm supposed to be doing and reading, and listening to and..... you get my drift. I'm grateful to be a SAHM but I do have to bring in $ so I do artwork after the kids are in bed. That unfortunately leads to lack of sleep.

So that's my quick synopsis. *sigh* More than you needed or wanted to know.

I know there is SO much more and I'll continue reading the thread when I get moments here and there. Thanks to you guys for sharing and making my lonely world feel a little less desolate. I'm in awe at much of your guys' strength and patience. Simply in awe.

I'll keep reading now.

So glad you decided to jump in! Let me be the first to welcome you . You will find this thread to be a safe haven. Feel free to vent, share, laugh, cry...whatever you need to do. We've all been there at one time or another! I hope you will find the time to read through this thread. You will find so many wonderful stories, advice etc. You may even get a good laugh at times. Parenthood is hard enough in it's own right, but add in a child with special needs and it's a different world altogether. Only parents who live it can possibly fully understand the emotional and physical strains, but as all of us here have decided, we've been entrusted with something very special ......and God Himself believed that we were the right ones for the job! Take heart and be encouraged, we're all here to give support and help in any way we can.

Sweet dreams my Schmollish sistas! (I'll try to post the Buddy soccer pics tomorrow.)

 

[C&G'sMama]

We too, look forward to summer. As DP is a SAHM the kids only do 1 or 2 weeks of camp. But DP has discovered routine is key so summer time is "mommy school". The kids have lessons that she puts together and this year they are each doing a summer project. DS has chosen to write a comic book based on stories he and I have made up at bedtime. They are based in outer space. He will incorporate facts from space into the comic book. DD has always wanted to learn to sew so I think she and DP are going to work on that.

They try to go on a weekly field trip that is somehow related to the theme of the week.

As for camps DS will probably go to a week of chess camp again. There is a local group that puts on a camp for Spectrum kids but it meets 1/2 days over 2 weeks and he actually does well in full day camp so we'll probably just stick with Chess Camp this year. Chess camp is good, they play chess all morning and then go up to the park about 1/4 mile from the Chess Center to hike and play soccer. In the afternoon it's more chess. And on Friday they walk 1/2 mile to Wendy's for lunch which the kids get a kick out of.

DD is having issues with her class being rowdy and with her hearing problems and having a 504 and the school not wanting to get an FM system for her.... but that's another story for another time. So we'll be happy when school's out (which is not until June 29th for us).

 

[kampfirekim]

As promised, pics of Buddy Soccer!
He actually APPEARS to be playing here. He actually took a break and was on the sidelines kicking an extra ball to his buddy. Notice the Hot Wheels car in his left hand.....very spectrummy!

I believe here, he has a mouthfull of water and is getting ready to spit. At least his shirt isn't over his head like the kid in the background.

Little bit of a wresting match there.

and we're off again!

Love this pic! It actually looks like he's part of the game doesn't it? He's actually just running THROUGH the game!

Me and Schmutch boy....wrestling him to get a pic. Wish I'd known my hair looked that rough, I wouldn't have let her take the pic! Oh well, hair in Schmolland is often disheveled anyway!

More running away! That poor buddy. She's had him for two weeks straight. What a trooper she is!

This area actually had about 3 soccer fields and he ran crossways back and forth during the ENTIRE game never joining in, not even once. He ran the entire hour, except for during the water break. Gee whiz! Too bad I can't bottle that energy up and sell it!

 

[bookwormde]

ppony
Welcome and hang in there. Quite honestly with you description and the age you really have no Idea where on the spectrum your child is. I have a niece that did not speak much until 3.5yo and is a double major in accounting and computer science so you never know. The "state of the art" as to supporting our kids a improving so rapidly that no matter where he is on the spectrum, she will have opportunities to flourish and meet his potential that did not exist a few year ago.
On the practical side get a copy of Tony Attwood's "the complete guide to Aspergers" which is available on Amazon for about $17. Even if your child is more towards the classic end of the Autism spectrum it will provide you with great insight and since kids are "moving up" the spectrum at a much greater rate than in the past it is important to know the challenges and gifts that go along with a higher functioning child (not to mention you will be able to support you DS10 much better). I would also suggest looking into floor time therapy (which you can also do at home) here is a link
http://stanleygreenspan.com/
Check with your state Autism society, they should be able to steer you to a local support group.
Again hang in there, not knowing exactly what your child's challenges are going to be is one of the hardest parts of being a spectrum parent, as is just not being knowledgeable on the subject.
bookwormde

 

[iwrbnd]

kampfirekim, your little guy is ADORABLE! I'm so glad you posted pics! I especially love putting a face to the girl that makes me laugh! Thanks!

ppony, to you! I think the initial move to Schmolland is the hardest part! Also, the "not knowing" the future always made me think of the worst case scenario. None of my worst fears ever happened and I wish I could go back and just enjoy my son's early years! I agree with bookwormde, your son is so young and there is so much developing that he'll do! I'll bet you will be amazed at his accomplishments. One person told me, remember that ASD has no stop sign like other disorders, nobody can tell you they will only go "this far"! And if they do, they are probably wrong! When my son was 3 the experts told me their goals for him were to someday go to a regular school with an aide. Well, not only did he surpass those goals but has gone beyond anything I ever dreamed of! He still has challenges but he's not easily identified as ASD anymore! He's 11 yrs old, gets straight A's and just had his IEP dropped! Those are things I never dreamed of! He doesn't struggle with executive functioning skills, like my ADD child, and I think that has made a huge difference for him!

I'll tell you what my DH always said to me when I started worrying. He would say "Don't write the end of his life story when he hasn't even lived it yet." What he meant was to enjoy his life and stop worrying about "someday". I still struggle with this, even now, but I'm TRYING not to worry! Hang in there and remember we are all here for you!!!

 

[C&G'sMama]

KampfireKim LOVE the pictures!

DS is playing soccer for the first time this year (I don't think I ever formally introduced and jumped right in) He's 7 diagnosed with Asperger's at 5. He's very bright but socially around 4 1/2. He plays soccer in our city league which is very low key. And his coach is a teacher at school who is engaged to his current teacher, so it's great.

The kids on his team are anywhere from older fours and 5s going into K to 8 (going into 3rd grade). It's a riot. Our friend's daughter is on the team and they suspect possible spectrum issues but no formal diagnosis. So friend's DD is at one end of the field (sitting) while the rest of the team is at the other end. Coach calls her to come to the other end, so she starts crawling, "run" so she starts "running" on all fours. They are the Wild Cats you know and Wild Cats run on all fours.

In mean time DS makes a goal, for his team, while playing defense (he was a tad offside (they don't care in this league nor do they keep score). Minutes later he falls to the ground belly down, butt up (with a nice 1/2 moon for all to see (he can't keep his pants up))

I'm telling you it's down right entertaining. There's only one kid who takes this a little too seriously and I'm guessing his parents will switch him to one of the town league's next year.

Oh and to bounce around I loved the discussion around language and how our kids express themselves beyond their years sometimes. DS does this all the time and I'll look at DP and say "what does that word mean"?

 

[Kat77]

Welcome PPony! I am so glad you found this thread! .
http://www.wrongplanet.net/article295.html
WrongPlanet: When were you diagnosed?
Temple Grandin:Well, I'm fifty-eight so I was originally diagnosed as brain damaged. And I had the full blown symptoms. I had no speech until I was three and half to four years old.

Above is a link and an excerpt from an interview with Temple Grandin. If you do not know who Temple Grandin is yet PLEASE watch a video lecture on youtube. I find it facinating that Grandin was such a late talker. Do speech therapists ever reference this to parents of nonverbals? I know that I'd want to hear this just for reassurance.

I did not sleep very well last night so hopefully someone else will address this better I can. It is okay to let things go! Anyone doing everything perfectly is either lying or deluded. If brushing every 90 minutes is too much to handle, make a schedule that will work for you, do that instead and DO NOT SWEAT IT ANYMORE. If the kid won't eat anything green, give him suppliments. Can't tie his shoes, buy velcro or ez lacers. If you focus all your attention on what a child can't or won't do, you quit enjoying the child because all you ever do is frustrate him. We get so many specialists throwing stuff at us to work on, it's overwhelming for both us and the kid. Make a list of what is most important right now and effecting everyday life. Pick two and that is where your focus should be. Everything else can wait. I am not saying the other things don't matter, everything will have it's moment eventually.

 

[ppony]

I'll tell you what my DH always said to me when I started worrying. He would say "Don't write the end of his life story when he hasn't even lived it yet." What he meant was to enjoy his life and stop worrying about "someday". I still struggle with this, even now, but I'm TRYING not to worry! Hang in there and remember we are all here for you!!!

OH....anyone else cry at reading that??? That's a beautiful way to think. I'm going to adopt it!!!!
I also NEEDED it today. The country teacher and OT came today for their last session of the school year and the OT was very concerned that Daniel zones out and while doing so, tenses, not relaxes. So she was recommended a possible neurologist to see if he might be having seizures. Of all the things said to me in the past year and a half, that was the one thing that struck actual fear in my heart.

THANK YOU ladies! It was exactly NOW that I needed to find this thread. I've had no one but the therapists to talk to and my DH doesn't exactly take a proactive roll in helping so I'm feeling pretty alone at the moment.

 

[iwrbnd]

ppony, I'm glad that analogy made you feel better! Here's another one I heard the other day on tv about worrying about the worst case scenarios. They said, "It usually never happens and if it does then you've had to live it twice!" That hit me hard! They also thought my son was having petite seizures when he was in preschool because he would just check out. The therapists would say "He's not here, he's completely gone for a few seconds at a time!" We had him tested but he wasn't having seizures, just having HUGE ADD moments! Don't let it scare you. I've heard some amazing stories about children diagnosed with autism only to find out they were having lots of tiny seizures. When put on anti-siezure meds their autistic traits faded! I wish I could just give my kids some anti-seizure meds and make everything all better!!!

Kat77, I agree with you! You have to pick and choose what you're going to focus on and let the other things go. I call it "survival mode"!

I also think Temple Grandin is amazing and I would recommend any of her books. Since I'm a HUGE animal lover I read "Animals in Translation" and "Thinking in Pictures". It was amazing to read her insight into autism and animals!

 

[kirstenb1]

ppony, my heart goes out to you. Our 12 yr old has ADD, and our 4 1/2 yr old has ASD. I know exactly what you mean when you say your older child is a breeze compared to the younger one. Our younger one was 2 and receiving
Early Intervention. Not talking yet. Usually ran around the staircase here the entire 45 minutes of ST per week.

She's now pretty verbal, still delayed, but greatly improved. Right now we're dealing with lots of emotions (or for those of you whose school uses Al's Pals, "really big feelings"!)

Yes, she still has a lot of work ahead of her. But she has made a lot of improvement in the last couple of years.

 

[kirstenb1]

KFK, I loved your photos!! Your son is such a cutie!!

 

[Kat77]

KFK's photo's are all action shots, I got sympathy exhaustion just by viewing them! LOVE the photos!

Our meeting went great yesterday. DS9 was accepted into the district program we were hoping for. I am so psyched! We met the teacher and even got the okay to send out flyers to the other parents in hopes of starting up a social group this summer for the kids in the program.

DS9 has a two week social skills camp but no one else is signed up for anything except music tutoring. Usually, I teach VBS at church and the kids attend that but last year I had so many issues with DD11, I am not even bothering this year. Every time I left my classroom I caught her roaming the church. My older daughter also ran into her constantly and escorted her back to her group. It's just soooo not worth the frustration! So we will just be chilling here. Summer flies by much too fast.