Exhausted from parenting/ASD children/Welcome to Schmolland!

[lovethattink]

Hollyrod is giving away ipads to people on the spectrum who are non-verbal or minimally verbal. My child doesn't qualify. Here is a link to read about the ipad giveaway. The application and requirements are a link near the bottom. http://www.hollyrod.org/cgi-bin/download.cgi I was given the link from the Florida Epilepsy Foundation.

 

[Kat77]

Do your children play video games? My son can't play for long because of being photosensitive, but he really wants Epic Mickey. My husband was listening to focus on the family and they gave Epic Mickey good reviews. We are debating whether or not to make the purchase??

I'm excited about Epic Mickey!
DD12 has an issue with strobe effects but not much else. DS10 is addicted to the PS3 game Little Big Planet, we have to limit his time but he plays it almost daily. It's how he decompresses. It's weirdly calming. He uses it to build inventions rather than playing a ton of fast action levels. We have to force him into actually playing a few levels with his brother. There is this adorable little british boy who he builds with over the PS3 who is completely obsessed with Doctor Who. I swear it is an Aspie home media center. It's a bunch of little guys hyperfocusing on their favorite things with each other.

 

[toodycat]

DS is downstairs playing Epic Mickey right now. I watched him play a bit of it last night. It looks pretty cool.

 

[Kat77]

Happy Hannukkah, TC!

 

[toodycat]

Kat77---Thanks! We're going to my SIL's tonight for the traditional potato pancake and doughnut feast. So not a holiday for anyone watching their weight...

 

[Brightsy]

LOL! So, my lad is a heavy sleeper. This AM proved that to no doubt. We went to wake him up this AM, which usually involves pulling him out of bed and putting him on his feet. After that he zombie shuffles to the stairs, slumps down them and whumps onto the sofa where he'll doze until he smells his breakfast.
Anyways, I digress. This AM we went in and rolled DS over to get him into prime bed-pulling-out of position. We noticed some marks on his belly. He fell asleep on some legos and a marker! On his belly were perfect indents of a marker and several lego pieces, including a perfect outline of a lego dude! LOL! I could just imagine "Help meeeeeeeee, he'p meeeee! I'm being squished, ohhhhh help me!!!!"

 

[lovethattink]

-Brightsy, that's cute. Good thing the marker wasn't open!! Or he could have had decorated legos and belly!

-Hoping to play someone else's Epic Mickey, then we will decide.

-At counselling this week, my 6 year old told the counsellor he wishes he had friends. She asked him how he makes friends. She told me he needs to learn about personal space, opening lines to say to make a friend, to remember to smile and try to look at the person's face, and let them finish talking, no interruptions. So he decided to put his newfound skills to work at the grocery store. The bagger is a petite woman with Down's syndrome. Instead of saying hi...the conversation went like this...

6 yr old smiling, "How old are you?"
bagger, "29"
6 yr old, "oh, I'm 6."
End of conversation. But it was cute, and he smiled and looked her in the eye!

-We leave for a mini-vacation at Disney on Sunday. He is excited to practice making friends in line. We'll have a GAC card for alternate entrances, but I think we will use regular lines unless he gets over stimulated practicing. I had plans, but it's turned into a winging it vacation. Dh and ds16 are going fishing one of the days, so I booked a lunch at the Grand Floridian Cafe to check out the gingerbread display, and that's the only plan we have. I'm sure a quick trip to DTD to the lego store will be in order at some point! And he is begging to see PUSH again, so hopefully PUSH will be out at MK.

 

[lovethattink]

Posted a pre-trip report http://www.disboards.com/showthread.php?p=39197722#post39197722

 

[redshoes]

Checking in with sadness and frustration so fair warning this is not a sunshine and roses post-

Here's my update on DS. DH and I have adopted all the new parenting tips that everyone has suggested to parent DS. We are doing everything right. No emotion during rages, clear limits, support, social stories, etc.. He was doing great, amazing, and we were skipping down the path of comfortableness with little to no bumps in the road after a nightmarish summer.

In October, we sent him for a neuropsych. Because, knowledge is power and we need to know what we are dealing with. Test results came back with nonverbal learning disability not on the autism spectrum. DH and I were convinced that he was an Aspie but the DR. said nope. Too social, too willing to please. His IQ test came back with a 108 for verbal 83 for non. He has processing delays, his fine and gross motor skills are lacking, he struggled with the facial expression portion of the test.

Meanwhile, we have started to see a new therapist who is an expert in the field of ASD. She too agrees, DS is too social, too expressive, too empathic. She loves DS. She is tough and firm but understanding and well DH and I were just saying a few days ago, "things are going so good, we don't know what to tell her that DS needs to work on".

We have also started to see a Psychiatrist. DS was prescribed Risperdal at his inpatient unit because of what they said was a mood disorder NOS, but was having major side effects. Weight gain of over 20lbs in two months, high cholesterol, high prolactin levels. DH and I were not sure it was making a difference mood wise so that along with side effects were reason enough to wean off the med. Meanwhile, PDOC suggested we try Busiprone for anxiety (yep, he's got that for sure)- opposite effect created paranoid thoughts and heightened anxiety. He was officially off the Risperdal completely as a week ago yesterday . Things were going good or so we thought. Over the last few days, we are back to the manic behaviors that sent him to the inpatient unit to begin with this summer. There are no triggers this time, no bad episodes, no meltdowns, nothing- just rage and aggression that wasn't there on the Risperdal.

Today was the breaking point. DH made an emergency call into the PDOC who has now prescribed Abilify. DS is stable right now (as in he's not raging at this very moment) but not before a ton of scary episodes and the breaking down of all the trust that we were slowly building back up. The heartbreaking thing, he told DH that he knows we love him but he doesn't feel it when he gets like this. He feels like everyone is out to get him.

So here's my questions (you wonderful veterans)- what is your breaking point? How do you continue to live your life without watching over your shoulder the whole time? My DS, who I love and value scares the life out of me and he's 7. I have two other kids (DS who is 8 and DD who is a small baby) that I love dearly and have to protect. I have a DH who I love and need in my life. And I have DS who's issues have become all consuming. I know that sounds extreme but the stress and the acts of aggression after us doing everything right is so very depressing. People keep telling it's going to be okay. That things are going to work out, but what I wonder is at what cost to everything that means the most to me.

 

[kirstenb1]

LOL! So, my lad is a heavy sleeper. This AM proved that to no doubt. We went to wake him up this AM, which usually involves pulling him out of bed and putting him on his feet. After that he zombie shuffles to the stairs, slumps down them and whumps onto the sofa where he'll doze until he smells his breakfast.
Anyways, I digress. This AM we went in and rolled DS over to get him into prime bed-pulling-out of position. We noticed some marks on his belly. He fell asleep on some legos and a marker! On his belly were perfect indents of a marker and several lego pieces, including a perfect outline of a lego dude! LOL! I could just imagine "Help meeeeeeeee, he'p meeeee! I'm being squished, ohhhhh help me!!!!"

I thought our Zoe was the only one who surrounded herself with rigid plastic toys before going to sleep!! I swear!! Our older dd would grab a doll or stuffed animal and be good to go. Zoe grabs blocks and legos, and will not get into bed without them. How comfortable is that?

 

[kirstenb1]

Checking in with sadness and frustration so fair warning this is not a sunshine and roses post-

Here's my update on DS. DH and I have adopted all the new parenting tips that everyone has suggested to parent DS. We are doing everything right. No emotion during rages, clear limits, support, social stories, etc.. He was doing great, amazing, and we were skipping down the path of comfortableness with little to no bumps in the road after a nightmarish summer.

In October, we sent him for a neuropsych. Because, knowledge is power and we need to know what we are dealing with. Test results came back with nonverbal learning disability not on the autism spectrum. DH and I were convinced that he was an Aspie but the DR. said nope. Too social, too willing to please. His IQ test came back with a 108 for verbal 83 for non. He has processing delays, his fine and gross motor skills are lacking, he struggled with the facial expression portion of the test.

Meanwhile, we have started to see a new therapist who is an expert in the field of ASD. She too agrees, DS is too social, too expressive, too empathic. She loves DS. She is tough and firm but understanding and well DH and I were just saying a few days ago, "things are going so good, we don't know what to tell her that DS needs to work on".

We have also started to see a Psychiatrist. DS was prescribed Risperdal at his inpatient unit because of what they said was a mood disorder NOS, but was having major side effects. Weight gain of over 20lbs in two months, high cholesterol, high prolactin levels. DH and I were not sure it was making a difference mood wise so that along with side effects were reason enough to wean off the med. Meanwhile, PDOC suggested we try Busiprone for anxiety (yep, he's got that for sure)- opposite effect created paranoid thoughts and heightened anxiety. He was officially off the Risperdal completely as a week ago yesterday . Things were going good or so we thought. Over the last few days, we are back to the manic behaviors that sent him to the inpatient unit to begin with this summer. There are no triggers this time, no bad episodes, no meltdowns, nothing- just rage and aggression that wasn't there on the Risperdal.

Today was the breaking point. DH made an emergency call into the PDOC who has now prescribed Abilify. DS is stable right now (as in he's not raging at this very moment) but not before a ton of scary episodes and the breaking down of all the trust that we were slowly building back up. The heartbreaking thing, he told DH that he knows we love him but he doesn't feel it when he gets like this. He feels like everyone is out to get him.

So here's my questions (you wonderful veterans)- what is your breaking point? How do you continue to live your life without watching over your shoulder the whole time? My DS, who I love and value scares the life out of me and he's 7. I have two other kids (DS who is 8 and DD who is a small baby) that I love dearly and have to protect. I have a DH who I love and need in my life. And I have DS who's issues have become all consuming. I know that sounds extreme but the stress and the acts of aggression after us doing everything right is so very depressing. People keep telling it's going to be okay. That things are going to work out, but what I wonder is at what cost to everything that means the most to me.

I'm sorry and I don't know the answer. A couple of years ago, I decided my job was like that of a marine sentry who never went off duty (unless dh was on duty). Parenting these kids is hard, hard work. I hope you can find the right blend of meds.

 

[lovethattink]

Kate, I am sorry things are so rough right now. I am not a veteran and this is all pretty new to me since June. I don't have answers for you. Just want to share what the psychologist told me. He said that when I complain about not liking my son's behavior, but loving him, that he can't comprehend it. That he sees himself as the whole package and when I don't like something about him, then that means to him, that I don't like him. My son is 6.

I hope this rough time for you resolves quickly. You are caring for alot of people so I hope you can find someone to help you get some time to care for yourself too.

 

[bookwormde]

Redshoes,

Any clinician who ways a child it "to social" or to "empathic" is certainly not highely qualified. Many of our kids adapt. What Highly qualified clinicains do it to see how these socal skills are generated and what level of exceptional effort and anxiety it creates (they find out if the skills are innate or intellectual compensitory adaptations).

There are lots of ADS "experts" who do not have a clue when it comes to self adapting high funtioning kids.

The co-morbid diagnosis did not occur without a "source" until you find that source all the medications in the world are just "bandaids" with serious side effects.

I can not tell you have many parnets I talk with who have been to so called "experts" and it is not until they get to a major medical center with a highly qualified team that they find out that the prior clinicians were in no way "experts" and were using generalities from the broader spectrum, and none of the currnet appropriate clinical evaluation tools and techniques.

Trust you instincts, if you think the clinicians have you child on the correct path then stick with them, if not find someone who can help.

bookwormde

bookwormde

 

[toodycat]

Redshoes---Bookwormde is correct. Even the specialists make gross generalizations. Keep looking until you find someone you feel very comfortable with who seems to "get" your kid. Don't work with any professionals who seem dismissive or condescending about your concerns. Hugs.

 

[Nik's Mom]

Checking in with sadness and frustration so fair warning this is not a sunshine and roses post-

Here's my update on DS. DH and I have adopted all the new parenting tips that everyone has suggested to parent DS. We are doing everything right. No emotion during rages, clear limits, support, social stories, etc.. He was doing great, amazing, and we were skipping down the path of comfortableness with little to no bumps in the road after a nightmarish summer.

In October, we sent him for a neuropsych. Because, knowledge is power and we need to know what we are dealing with. Test results came back with nonverbal learning disability not on the autism spectrum. DH and I were convinced that he was an Aspie but the DR. said nope. Too social, too willing to please. His IQ test came back with a 108 for verbal 83 for non. He has processing delays, his fine and gross motor skills are lacking, he struggled with the facial expression portion of the test.

Meanwhile, we have started to see a new therapist who is an expert in the field of ASD. She too agrees, DS is too social, too expressive, too empathic. She loves DS. She is tough and firm but understanding and well DH and I were just saying a few days ago, "things are going so good, we don't know what to tell her that DS needs to work on".

We have also started to see a Psychiatrist. DS was prescribed Risperdal at his inpatient unit because of what they said was a mood disorder NOS, but was having major side effects. Weight gain of over 20lbs in two months, high cholesterol, high prolactin levels. DH and I were not sure it was making a difference mood wise so that along with side effects were reason enough to wean off the med. Meanwhile, PDOC suggested we try Busiprone for anxiety (yep, he's got that for sure)- opposite effect created paranoid thoughts and heightened anxiety. He was officially off the Risperdal completely as a week ago yesterday . Things were going good or so we thought. Over the last few days, we are back to the manic behaviors that sent him to the inpatient unit to begin with this summer. There are no triggers this time, no bad episodes, no meltdowns, nothing- just rage and aggression that wasn't there on the Risperdal.

Today was the breaking point. DH made an emergency call into the PDOC who has now prescribed Abilify. DS is stable right now (as in he's not raging at this very moment) but not before a ton of scary episodes and the breaking down of all the trust that we were slowly building back up. The heartbreaking thing, he told DH that he knows we love him but he doesn't feel it when he gets like this. He feels like everyone is out to get him.

So here's my questions (you wonderful veterans)- what is your breaking point? How do you continue to live your life without watching over your shoulder the whole time? My DS, who I love and value scares the life out of me and he's 7. I have two other kids (DS who is 8 and DD who is a small baby) that I love dearly and have to protect. I have a DH who I love and need in my life. And I have DS who's issues have become all consuming. I know that sounds extreme but the stress and the acts of aggression after us doing everything right is so very depressing. People keep telling it's going to be okay. That things are going to work out, but what I wonder is at what cost to everything that means the most to me.

I am so sorry! I can only imagine how difficult this must be for you. My story is not the same as yours, but we did go through maybe 2 years of hell with my youngest son. He was suffering from severe anxiety and it was the most difficult time in our lives. In the end, faith carried us through that time. And I am still amazed that we made it through that very dark time. But even as time has passed, when I look back at it, I still get sad for my son, angry at the so called "specialists" who did nothing to help.

Hang in there and keep fighting.

 

[Kat77]

I have not seen Kim around lately but I saw a half naked Smutch teen at Target the other day and thought of her. Poor guy was stripping down in the jewelry section. We stopped for a second to makes sure Mom was okay (he towered her in size and my pop is a brawny man who could have assisted) but the smutch teen was only disrobing and not lashing out physically so we walked on.

Holidays have been great. My kid loves being home so it's returning after a break we have to brace for.

Redshoes, how are you?

 

[Kat77]

Redshoes---Bookwormde is correct. Even the specialists make gross generalizations. Keep looking until you find someone you feel very comfortable with who seems to "get" your kid. Don't work with any professionals who seem dismissive or condescending about your concerns. Hugs.

So true! I have met my share of doozies in therapy.
Anyone else met kiddos who are CLEARLY on the spectrum that some "specialist" dx'd adhd and the parents seem at their wits end with but are still in firm denial that more is wrong even though they are not making progress? (How was that for a run on sentance?) I have! It's mind boggling. What say you Bookwormde and teachers? I can't be the only one...
This is a huge pet peeve for me personally. My cousins son is one of those kids being missed. He has serious sensory issues and it is painfully obvious he has Aspbergers. I don't know how she spends days around my younger son each summer and goes home convinced hers is still "just adhd" because some doctor said so. The little guy has been kicked out of a half dozen private schools for meltdowns and she is always so upset with him . One day I'm going to lose it and try to smack the stupid right out of her! My family has been warned...

 

[toodycat]

KAT77---I am a teacher and I can't tell you how many states require NO training in special ed. for regular classroom teachers. Lots of teachers don't identify learning and developmental differences because they don't know what they're looking for. The only reason I know as much as I now do is because of all the personal research I did after DS was diagnosed and because I asked the school district if I could attend special ed. staff developments and they said OK. Keep in mind that for part of my extremely ignorant period, I was teaching the collaborative model with a special ed. teacher in my classroom and the school did not provide me with any training on recognizing or coping with kids with learning differences. That was the special ed. teacher's job as far as they were concerned; mine was just to teach the curriculum!

My first year as a teacher, there was a boy in my class who was socially way off and used to bang his head against the wall. I thought he was just immature and had no reason to think differently. He didn't even have an IEP. His behavior and gestures didn't sit right with me and I did some digging and found out that he was on the autism spectrum, that he had been in a special offsite program his whole life before his parents decided to de-classify him completely and put him in a traditional high school. I couldn't give him any testing modifications without an IEP and I had no knowledge of which mods would have been effective anyway. No wonder the poor kid had trouble adapting! I wish I had known then what I know now. I just wanted to share all this because I really feel we should be pushing our state governments to require special ed. courses of ALL teachers. So many kids slip through the cracks needlessly and it can be prevented.

Enjoy the holidays everyone. I'm looking forward to my week off with DH and DS. Can't wait to watch the Disney parade on Christmas Day.

 

[MRYPPNS]

 

[lovethattink]

Merry Christmas!! I hope you are all having a wonderful day!