Exhausted from parenting/ASD children/Welcome to Schmolland!

[MRYPPNS]

Just popping in to say Hello! My 3 year old son Liam has ASD and I've been reading along for a couple weeks....it really helps to know I'm not alone in how I feel sometimes!

.....now I just have to figure out what Schmolland is!

 

[rodeo65]

Rodeo65---Wow, that is a scary and terrible story. That psychiatrist should lose his license. What is an emergency if not a suicide threat? That guy was a totally insensitive hack. I'm glad you have your son back, hyper or otherwise.

toodycat - it was the most terrifying few evenings of my life. Each episode seemed to be around the time the meds would have been wearing off. We're happy that we explored the Rx route but are so much more happy to have him back the way he belongs. We were used to dealing with him for seven years unmedicated, so we're coping again. Our biggest issue is school and making sure they are on board with the accomodations needed. We've tried to walk the line diplomatically telling them that he will not be medicated again. His principal seemed to accept it fairly well but his teacher had a little more difficulty. Of course she had the day to day interactions to deal with.

Gosh, of course! I think in word pictures, so I always have weird ways of looking at things running through my head. Glad it helps!



Definitely NOT ok on so many levels; I am so saddened that you all had to go through this. I really think the doctor was criminally negligent in this case; fwiw, DD's first phychiatrist first misdiagnosed her, and then she also became psychotic on Daytrana, and suicidal on abilify- needless to say, they are no longer on her list- and we have a new doc. DD needs meds for her seizures and immune issues as well, so it's always a balance. She is currently on metadate and risperidol because without them we have a raging tasmanian devil on the loose pretty much 24/7. Even with meds, she jumps on her trampoline for hours, still has a lot of difficulty attending even for several minutes, and rages- but not as much and not as long.

ireland_nicole - so sorry that you had a similar experience. It's so scary not knowing how to reach your child and what to do to help them. We were pretty close to calling 911 when things started to calm down. I just basically bear hugged him and waited it out. In hindsight, I actually think DS is fairly mild as far as his symptoms go and often just isolating and de-stimulating him can get him under control. We're really fortunate in that regard, and I don't know why we let the school talk us into medicating him in the first place.

As I said above the biggest issue is going to be his education. I keep saying to DH "here I go through grade school again" - I have to sit with him through all homework and continually re-direct or it just does not get done. I think there can be a big trial and error phase of finding the right med and dosage for any child and for many the benefits outweigh any difficulties getting there. For us it wasn't the case. Hmmm - trampoline. That may be a good investment.

 

[toodycat]

toodycat - it was the most terrifying few evenings of my life. Each episode seemed to be around the time the meds would have been wearing off. We're happy that we explored the Rx route but are so much more happy to have him back the way he belongs. We were used to dealing with him for seven years unmedicated, so we're coping again. Our biggest issue is school and making sure they are on board with the accomodations needed. We've tried to walk the line diplomatically telling them that he will not be medicated again. His principal seemed to accept it fairly well but his teacher had a little more difficulty. Of course she had the day to day interactions to deal with.

As I said above the biggest issue is going to be his education. I keep saying to DH "here I go through grade school again" - I have to sit with him through all homework and continually re-direct or it just does not get done. I think there can be a big trial and error phase of finding the right med and dosage for any child and for many the benefits outweigh any difficulties getting there. For us it wasn't the case. Hmmm - trampoline. That may be a good investment.
__________________

Honestly, I am a teacher and although having an unmedicated kid with some behavioral stuff going on makes teaching more challenging, I am still a teacher, not a doctor, and I would never tell anyone to put their kid on meds. A teacher may have to deal with his impulsivity in the classroom, but that pales when compared to the episodes at home you've described. My DS was on Concerta at your son's age and, while it helped him focus in school, I still did the whole hand-holding, spoon-feeding thing when it came to homework because by 3:30, the medication had worn off anyway. Now at 16, DS takes Vyvanse with almost no side effects for him (Strattera made him sleepy and obstinate.) and can work somewhat independently on homework, but I still have to check to make sure he did everything because in classes that are not supported with a collaborative special ed teacher like health and Spanish, there is no one to make sure he writes down his assignments in the first place. I think very close homework supervision is just part of our lot in life.

 

[persimmondeb]

I know what you mean, Ireland Nicole. We went to the Crayola Factory/National Canal Museum yesterday with my sister and her four-year-old. Theoretically DS should be much too old for it, but he had a lovely time, between the blocks, the water tables, and all the wonderful art supplies. There are moments when I wonder if he's EVER going to outgrow this kind of thing, and it seems particularily odd in a kid who's so intellectually and academically high funtioning.

 

[iwrbnd]

I've had such a good summer y'all haven't heard me whine about being
"exhausted from parenting" for a while. Well, with school starting up I'm getting nervous! The homework thing (remembering what is due, getting it done and turning it in) about makes me lose my ever lovin' mind! It's nice to know I'm not the only one "spoon feeding" my child his work! Hopefully this year will go better (I'm the forever optimist) but, if not, I know I have my Schmolland neighbors to support me!

 

[Nik's Mom]

Just popping in to say Hello! My 3 year old son Liam has ASD and I've been reading along for a couple weeks....it really helps to know I'm not alone in how I feel sometimes!

.....now I just have to figure out what Schmolland is!

You are not alone! Welcome to the group. Keep reading here. The people on this thread are so supportive!

 

[rodeo65]

Honestly, I am a teacher and although having an unmedicated kid with some behavioral stuff going on makes teaching more challenging, I am still a teacher, not a doctor, and I would never tell anyone to put their kid on meds. A teacher may have to deal with his impulsivity in the classroom, but that pales when compared to the episodes at home you've described. My DS was on Concerta at your son's age and, while it helped him focus in school, I still did the whole hand-holding, spoon-feeding thing when it came to homework because by 3:30, the medication had worn off anyway. Now at 16, DS takes Vyvanse with almost no side effects for him (Strattera made him sleepy and obstinate.) and can work somewhat independently on homework, but I still have to check to make sure he did everything because in classes that are not supported with a collaborative special ed teacher like health and Spanish, there is no one to make sure he writes down his assignments in the first place. I think very close homework supervision is just part of our lot in life.[/QUOTE]




I think you're right about the close supervision. I think maybe I was unrealistic about what the meds would do for him and in the end they made things so much worse, with really no great difference that I could see at least during homework in his ability to attend. Of course they were wearing off at that point but on or off meds I have always had to redirect.

On a happy note - we figured out a couple of things this week while the kids have been in forced exile(from each other) and banned from screens (extreme fighting between the two and disrespect to us respectively.)

First - they really are so much better without screens as much as the DSi allows DS to settle and calm down he does hyper focus. We have been using it more than we should as a crutch. Secondly - I had bought a couple of the multi subject review books to get back into the swing before the year starts. We had no end of drama and trauma with these books and I was tearing my hair out trying to get him to do anything. DD of course loves them and then has to go a few steps further to show him up by doing extra work.

I finally tried just tearing out one sheet - and magic!! He was able to get down to it without being overwhelmed by a whole book. One page looked easy to him and we've had a couple of math breakthroughs in the past couple of days!!

 

[Dancind]

Yesterday I ran into a mom I know who has a kid in my DS's math class. She told me her daughter comes home nearly everyday complaining about how this teacher treats my DS. He complains about this teacher, but hearing it like this makes me feel . School will be over in 16 days (but who's counting!) and then he will be done with her. This girl said to her mother "If I understand Dan has a disability, why doesn't Mrs. Q (the teacher)?" Why indeed..... I am not planning to do anything about it though, b/c like I said, only 16 days to go, then he will be done with her. But UGH!!

Still reading through the thread, but had to post. My DD had an abusive FIRST GRADE teacher! She completely went off on my daughter one day, picture day, and I only found out because two parents had their kids pulled out of her class. Because they witnessed her treatment of MY daughter! Would have never known if I hadn't called one of the Moms to find out how she got her kid transferred.

 

[iwrbnd]

Still reading through the thread, but had to post. My DD had an abusive FIRST GRADE teacher! She completely went off on my daughter one day, picture day, and I only found out because two parents had their kids pulled out of her class. Because they witnessed her treatment of MY daughter! Would have never known if I hadn't called one of the Moms to find out how she got her kid transferred.

I'm so sorry to hear this!!! It sounds like you're a wonderful advocate for your child! Way to go mom!

 

[Dancind]

OK, caught up. Read everything over the last week. I was completely on board from your first post, Iwrbnd. Kindred souls!

Now that I've finished, I'm not sure I belong. Last December, I would have told you that DD has outgrown most of her ASD and was doing very well. No friends, really, and the whole boy thing is just heartbreaking for her, but compared to her younger years, so well.

In fact I thought it might be time to throw her in the water, so to speak. She started at the big university in town in January after a good semester at the community college, and I came up with the money for her to live on campus. Sort of a halfway house I figured.

It did not go well. Mea culpa. She's back home for a good while. She did learn to longboard living on campus. Lots of injuries.

But I only have the one, so I have had it much easier than many of you.

Thanks for some epiphanies while reading this thread. I have been going through guilt and depression, feeling like a failed Mom. DH gives me a hard time about my
"failures" and it's good to know I'm not the only one.

You all have helped me resolve to find her some help, somehow. First, she needs a real diagnosis besides ADD and CAPD (which her school never accepted anyway). She was on Tenex and Dexedrine for years and I think it was the Tenex that actually helped her. When her Dr took her off it (5th grade, I think) things went downhill until we took her off the Dex in 7th grade and discovered it was making her kind of bipolar.

I will keep checking in, I have some real life war stories with school etc and maybe can contribute.

Do any of the Moms here feel like they might be on the spectrum too? You will notice from my signature line that I have made a habit of escaping to WDW for a while now!

 

[tabithakp]

i only check in on here once in a while. I can't always read everyones post because i get to emotional. i dont a full diagnoses for my ds (6) yet. but so far sensory processing disorder, and adhd. we just started him on meds in the last 2 weeks we have had problem with getting him to take his meds. unfortunately we dont have the daytrana patch available in canada.

the more i learn the more i think ASD. We have had him in some kind of therapy since he was 18months. i swear ive been at either an ot, speech, dr appointment once a week for the last 4 1/2 years and im exhausted.

im not sure i really have a question at this point i just wanted to introduce myself. i look forward to learning from all of you!

 

[ireland_nicole]

OK, caught up. Read everything over the last week. I was completely on board from your first post, Iwrbnd. Kindred souls!

Now that I've finished, I'm not sure I belong. Last December, I would have told you that DD has outgrown most of her ASD and was doing very well. No friends, really, and the whole boy thing is just heartbreaking for her, but compared to her younger years, so well.

In fact I thought it might be time to throw her in the water, so to speak. She started at the big university in town in January after a good semester at the community college, and I came up with the money for her to live on campus. Sort of a halfway house I figured.

It did not go well. Mea culpa. She's back home for a good while. She did learn to longboard living on campus. Lots of injuries.

But I only have the one, so I have had it much easier than many of you.

Thanks for some epiphanies while reading this thread. I have been going through guilt and depression, feeling like a failed Mom. DH gives me a hard time about my
"failures" and it's good to know I'm not the only one.

You all have helped me resolve to find her some help, somehow. First, she needs a real diagnosis besides ADD and CAPD (which her school never accepted anyway). She was on Tenex and Dexedrine for years and I think it was the Tenex that actually helped her. When her Dr took her off it (5th grade, I think) things went downhill until we took her off the Dex in 7th grade and discovered it was making her kind of bipolar.

I will keep checking in, I have some real life war stories with school etc and maybe can contribute.

Do any of the Moms here feel like they might be on the spectrum too? You will notice from my signature line that I have made a habit of escaping to WDW for a while now!

I am so sorry you're going through this, particularly with a husband who is so incredibly unsupportive. Maybe it makes his life easier to blame you for everything, but it is not mature, appropriate, or reality. There are moms her who understand where you are- and I'd also encourage you to find resources close to home too.

i only check in on here once in a while. I can't always read everyones post because i get to emotional. i dont a full diagnoses for my ds (6) yet. but so far sensory processing disorder, and adhd. we just started him on meds in the last 2 weeks we have had problem with getting him to take his meds. unfortunately we dont have the daytrana patch available in canada.

the more i learn the more i think ASD. We have had him in some kind of therapy since he was 18months. i swear ive been at either an ot, speech, dr appointment once a week for the last 4 1/2 years and im exhausted.

im not sure i really have a question at this point i just wanted to introduce myself. i look forward to learning from all of you!

I would definitly encourage you to get Tony Attwood's book about aspergers; bookwormde always recommends it to people who are wondering, and it is wonderful. If it makes you feel better, the Daytrana patch is definitely not a great answer for a lot of people either; it made DD psychotic, and the other three people I personally know who have tried it have had significant problems with it too. It works great for some, but def. not all. With or without a dx, you know and love your child and want the best for him. There's no quick fix or definitive answer for our kids sometimes. I think perhaps Dory said it best: "Just keep swimming" Anyway, it's good to meet you momma

 

[toodycat]

I totally feel like I'm on the spectrum at least a pinch. It explains soooo much about me as a kid.

Tabithakp---It may get worse before it gets better. I was schlepping DS to speech as many as 4-5 times a week, plus movement therapy plus music therapy for a few years there. Yeah, I was exhausted all the time and yeah, we ate a lot of take-out, but the bottom line is: it works! Keep the faith.

Good news and bad news at the Toodycat Ranch. Good news: DS got his learner's permit yesterday! DH, who is both brave and patient, took him driving last night. He said he did really well.

Bad news: DH's boss needs him in town for a series of Friday meetings, so we had to cancel our trip to WDW! We're hoping to re-book in October, for DH's 50th birthday, but will have to wait and see.

 

[Dancind]

I probably made him sound worse than he is. He did help with homework issues, that was a blessing. But, yeah, her bad habits are my fault.

So it seems that we are not the only ones that have med issues. Ritalin had an immediate negative reaction, very anxious and tearful. Should have been a clue. Same reaction to meds with hormones of any kind. It's sort of why I haven't pushed her into a doctor's office, what can they do besides talk at this point? She's not big on that.

Sorry about your WDW trip! I hope you can reschedule soon.

 

[iwrbnd]

Hello Dancid! It's nice to meet you! I feel similiar to you and your daughter. Sometimes I feel like mine are just fine and then other times I feel they are very disabled! It comes in waves depending on how they are doing in a given month! Your story scared me, though, since my 17 yr old (adhd/mild aspergers?) is a senior this year. I'm so worried he'll flunk out of college! He's smart but struggles with daily living skills and organization. My biggest fear is that he'll be in our basement when he's 40 yrs old! I agree with you about treatment...if you aren't going to do medication (many kids on the spectrum have bad results from stimulants) then what else is there to do? That's the most frustrating part, I think, about ASD. There is no definitive answer. My youngest son got a mild autism dx when he was 3. A few days later the doctor called because some of his tests came back very abnormal and it looked like he could have bone cancer! It may sound crazy but that didn't send me into the depths of despair that the autism diagnosis did! I think it's because if he did have cancer there is something we can do. It may not work but there is a plan and some hope! I know it sounds crazy but it's how I felt. Anyway, welcome to this forum and I hope you get lots of support! I know we all need it!

tabithakd...nice to meet you, too! The therapy is exhausting! My youngest son got about 30 hrs a week before preschool. He's starting middle school this year and doing GREAT!!! I don't know if it's from all the therapy/prayers or natural development but I'm so grateful. I still have concerns about him but they are minor. He's surpassed all the goals the doctors had for him! So, try not to dispair! There is hope and all that therapy will help him! Hang in there and remember we're here for you!

toodycat...congrats on the permit! My 17 yr old did a lot of maturing when he got his license! It seemed to really catapult him into maturity! (Well, until his very bad wreck but that's a whole other story!)

 

[Dancind]

Just watch out for those big lecture hall classes, that's what really did her in. I am trying to steer her towards the online version of those classes, and that might be where a dx would come in handy. She's signed up for one lecture class this semester, Sociology. Hers is supposed to be "web enhanced" for what that's worth. She swears she "knows what to do" now.

I know what you mean, though thank goodness we have not been through a serious health scare. If she keeps wanting to go faster on her longboard, though...

I did have some anomalies in my amniocentesis. I often wonder about that, especially now that they are learning more about the dna testing.

Yay for driving! I was amazed how well DD did when she got her license. Of course now she has been driving for a while, I think those risk taking behaviors are kicking in. That's the bad news. Good news, less chauffeuring soon!

 

[rodeo65]

i only check in on here once in a while. I can't always read everyones post because i get to emotional. i dont a full diagnoses for my ds (6) yet. but so far sensory processing disorder, and adhd. we just started him on meds in the last 2 weeks we have had problem with getting him to take his meds. unfortunately we dont have the daytrana patch available in canada.

the more i learn the more i think ASD. We have had him in some kind of therapy since he was 18months. i swear ive been at either an ot, speech, dr appointment once a week for the last 4 1/2 years and im exhausted.

im not sure i really have a question at this point i just wanted to introduce myself. i look forward to learning from all of you!

Hi tabithakp - we're in Ontario too When we did have DS on meds, we had to have it in capsule form so we could open it and sprinkle it on food. In the end, though, no meds for us.

I totally feel like I'm on the spectrum at least a pinch. It explains soooo much about me as a kid.

Tabithakp---It may get worse before it gets better. I was schlepping DS to speech as many as 4-5 times a week, plus movement therapy plus music therapy for a few years there. Yeah, I was exhausted all the time and yeah, we ate a lot of take-out, but the bottom line is: it works! Keep the faith.

Good news and bad news at the Toodycat Ranch. Good news: DS got his learner's permit yesterday! DH, who is both brave and patient, took him driving last night. He said he did really well.

Bad news: DH's boss needs him in town for a series of Friday meetings, so we had to cancel our trip to WDW! We're hoping to re-book in October, for DH's 50th birthday, but will have to wait and see.

That is a fear of mine - the day when DS is old enough to apply for a learners'. I'm sure DH will be much better as the training parent than I will be!

Sorry you had to cancel your trip - birthday trip sounds fun though! Hope it works out.

I probably made him sound worse than he is. He did help with homework issues, that was a blessing. But, yeah, her bad habits are my fault.

So it seems that we are not the only ones that have med issues. Ritalin had an immediate negative reaction, very anxious and tearful. Should have been a clue. Same reaction to meds with hormones of any kind. It's sort of why I haven't pushed her into a doctor's office, what can they do besides talk at this point? She's not big on that.

Sorry about your WDW trip! I hope you can reschedule soon.

We really had med issues all along, not just with the final one that caused the psychotic reactions. The absolute loss of appetite was a huge concern for us. DS was on the small end of growth to begin with but the meds just eliminated his appetite entirely. He would eat breakfast and that was pretty much it all day. I might get a bite or two in at dinner but the school said he seldom ate at lunch.

My DH is kind of the same in an opposite, backhanded way. After receiving DS's Dx we have come to our own conclusion that DH must be undiagnosed ADHD himself (based of course purely on similarities in behaviours and issues growing up and now as well), so whenever an issue comes up he says "I suppose THIS is my fault too?" or "I really handed him a load to deal with didn't I?" Obviously a lot of guilt on his part because I don't say or indicate anything like that at all. I don't really know what to say or do to help him with those feelings - I'm sure if I wanted to look hard enough I could find all kinds of "possible causes" that I may have contributed to during pregnancy. I just don't see the point in going there. Now is now and that's what we deal with.

 

[Dancind]

Rodeo, be sure to tell DH, well, you turned out OK so it's not that bad. And give him a hug.

I think DD got it from both sides. ASD on my side for sure, but definitely ADHD from DH. He has a problem with clutter though (a little OCD I think), and DD and I are both natural clutterers. Since I am a vintage dealer, I have lots of it and keeping up with DDs too is beyond me. He thinks I should have been teaching her to be neater all along. As Iwrbnd pointed out so well, I had all I could handle just making sure she getting through the day.

 

[rodeo65]

Still reading through the thread, but had to post. My DD had an abusive FIRST GRADE teacher! She completely went off on my daughter one day, picture day, and I only found out because two parents had their kids pulled out of her class. Because they witnessed her treatment of MY daughter! Would have never known if I hadn't called one of the Moms to find out how she got her kid transferred.

I completely missed this post earlier, Dancind, but can I ever relate!! We have our kids in an independent school - it is their third school. We first had them in Montessori, which DD probably would have been just fine in, but since the methodology is "child directed education" and DS was definitely NOT interested in directing any kind of education we switched tham after his second (her first) year.

The second school we chose because of it's "structure". Thinking that was exactly what DS needed (not diagnosed still at this point). He was there for SK and grade 1. More damage was done to him in those two years than I think can ever be fully repaired. He was sent to the principal's office regularly (I mean daily) for his "behavioural issues" which we now know to be ADHD and a learning disability. I was VP of the Parent's Assoc. at this school and I missed what was happening right under my nose. The poor little guy was so stressed that he chewed his tie to pieces. I could not get him out of bed in the AM and he "hated" school. This is just not his temperment. He is the happiest, sunniest little guy. I call him sunniest of sons.

We found out in the May of his grade one year what had been happening - he wouldn't tell us when he went to the office because he was afraid. He still to this day 2 1/2 years later reminds me that the director called him rubbish. Which I completely believe because she was British and he had never heard the term prior.

We visited his current school the morning after a huge blow up with the directors of the school, took the kids to a trial day and pulled their re-enrollment from that school within the week. I was prepared to pull him from the remainder of the year if they had continued to treat him badly but it seemed that once he was no longer enrolled they turned their attention elsewhere. I didn't want him to miss out on the end of year fun stuff though, with his friends. Families leave that school regularly. They never picked up on his learning issues.

This new school (well, starting their third year there, so not quite so new anymore) picked him out as needing the psych/ed assessment the second day. He was assessed and his ILP was in place by Thanksgiving (early October for us Cannuks) and he has done so well by comparison. There is a lot still to be done, especially through the meds/non-meds situation but now I feel we are in a school that is interested in helping, not just labelling and abusing. He had nightmares for a long while during and after that second school. He actually likes school again (although not all of the work) and wakes up on time now.

I fell like we've been Goldilocks in the extreme. First school - TOO soft, second school - TOO hard, third school - JUST right!!!!!!!!

And thanks for the suggestion for DH, quick, simple and to the point - I hate seeing him do the self-flagellation thing.

 

[tabithakp]

thank you everyone not only for your kinds words and encouragement but for posting your own experiences so i can learn from them.

i am very overwhelmed right now but i do realize this is one of the worst stretches for ds. ot has said that things should turn around soon. finger crossed (and toes, legs, arms, ). im glad to hear that others have had success with ot's because sometimes i feel like im paying for him to play with an adult i also tend to use humour to cope well that and icecream! heehee

a big thanks again!