O/T Advice Needed

[tmli]

I am really at my wit's end. My ds(7 1/2) has Aspergers, ADHD, OCD and a fear/anxiety disorder. We've been through alot behavioural wise, but lately things are even worse.

Some facts, we are treating him with meds and there have been no recent changes. We see a pedatrician, child psychiatrist and a behavioural counsellor...I've stayed very on top of his needs.

Last few days he has been having complete meltdowns....hasn't really had anything of this magnitude before. Last night for example: starts over something small and insignificant, next thing you know he is kicking and screaming, yelling obscenities, hitting his father (this is 1st one dad has witnessed), calling us terrible names, banging his head against the back of my car seat....just completely out of control. There was no talking to him, no reasoning..it was like he wasn't even my child. I could do very little but cry, my dh and I just held hands and pulled over to the side of the road to wait it out. As quick as it started he stopped and started crying saying it was all his fault, he was the worst kid in the world, he's stupid, he wished he would just die, this went on for 10 mins. then he calmed down and was my wonderful, polite little boy again.

When we were diagnosed with ADHD, he exhibited alot of behaviour that didn't seem to fit. When we were diagnosed with the other conditions pieces of the puzzle started to fit.

Those with Aspie kids, is this typical behaviour? We are new to this diagnosis and trying to figure it all out....just seems so much more severe than anything else we've had to deal with.

If anyone has any advice for me to help my sweet little boy, it would be greatly appreciated...I actually broke out into a rash last night during this, I am becoming physically sick with stress and worry.

I can't receive emails right now but if anyone would like to address me privately a pm would be better. Although I would be fine with posts as well!!

 

[SueM in MN]

I don't have any answers, just sending hugs and pixie dust and bymping this up so more people see it.
The only experience I have with Aspergers is my nephew. I know he doesn't have uotbursts like you are describing, he's more the withdraw and quietly cry type. But, each child is different, so there might be people out there who are saying - that's exactly what my family is going thru.
The only other thing I can think of is checking him for some physical problem. As a nurse, I know that some people are not really able to verbalize when they have something that is hurting them (if it's severe pain, they probably do; but the not-very-severe-annoying type pain, they don't). They might know that they don't feel good, but they don't really feel bad, just not right. When you feel like that (think of yourself when you have a headache), something insignificant might be just the last straw to send you over the edge.

 

[tmli]

Thanks Sue for the kind words. My son has never had these type of outbursts either, it is very difficult to deal with. I've been attempting to reach our doctors to get some advice/help but haven't had much luck yet; appt's were cancelled due to weather.

I've actually kept him home from school last couple of days because he has not been sleeping well. Last night finally crashed at 4:30 a.m.

Tomorrow will be a better day.....I hope.

 

[Figment1964]

Originally posted by tmli
When we were diagnosed with ADHD, he exhibited alot of behaviour that didn't seem to fit. When we were diagnosed with the other conditions pieces of the puzzle started to fit.

Those with Aspie kids, is this typical behaviour? We are new to this diagnosis and trying to figure it all out....just seems so much more severe than anything else we've had to deal with.

I have a 10 yo ds with Aspergers and the scene you've described is not all that uncommon from what I know of it. My son has meltdowns at times when I can't figure out what has caused them but sometimes I can look back and see the stressors that probably pushed him over the edge. Usually it's got to do with too much sensory input and he just can't handle it well. I find that with my ds if I sense him getting overloaded I try to get him out of whatever the overwhelming situation is as soon as I can. Once a meltdown has started the only thing we can do is ride it out. Our son has never been physically agressive, but tends to be verbally agressive (although we've, thankfully, been spared the foul language).

I guess what I really wanted to say is that you're not alone...a lot of us have been there, done that!

 

[tmli]

Thanks Barb for the reply. We've experienced the same type of thing you are talking about...I can usually see those coming and help him deal. Lately though these are completely different, that's what so scary.

 

[s&k'smom]

Oh man I didn't even finish reading the posts when I wanted to jump in. This sounds like my kid (PDD, sensory integration, anxiety). He has outbursts that can last an hour or 5 minutes. Lord only knows what brings them on. DH and I had a long discussion yesterday too about this and what if anything we can do. DS is a sweet, smart kid but his behaviors drain every ounce of energy and serenity out of us. We have lots of people on board for his care but it's tough. My only recommendation would be is that if you feel it necessary take him to other doctors, specialists anyone you think can help you with some answers. Keep reaching out for help too. Sometimes just talking to anothe parent can help put things into perspective. Please feel free to PM me if you would like to. You sound just like me. I would love to share some support.

PS your in the right place the Dis family will always be there for you.

 

[tmli]

I've just spent the morning on phone calls with our doctors and counsellors. They are telling me we may be looking at BiPolar Disorder.

So many diagnosis all overlapping each other I really don't know what way is up anymore. I find it very difficult to know what is meds and what is my son....could meds be making things appear that aren't there? Or could they be masking the real problem?

I've told my doctor I would like to get him off everything and start over. I hope that is the right choice. Taking him off meds is going to be just awful....I remember life without them!

At this point I don't know what to do anymore. Our doctor has talked about an inpatient treatment facility but that is to horrible for me to even consider. My baby is only 7.

Do you think eliminating all meds and getting back to basics is the right choice? We start weaning today.....May God (and the dis) be with me!!

 

[s&k'smom]

I just read your post and I wish I could tell you just the right thing to do but I will tell you to follow your mommy's instinct. You'll do what's right for your family. I'll say a prayer for you and please keep us up to date. Got you sound just like me it's sent a chill through me.

 

[tmli]

I'm so glad I sound like you....it's comforting to know I am not alone. It sure can feel that way sometimes.

I'm going to enlist some extra help over the weekend from my parents and siblings, my dh has to work. Our counsellor said I need to have back up because it's going to be tough.

I appreciate your prayers.

 

[Poohnatic]

First off, HUGS to your family. This is a bumpy road, but things DO smooth out.

I thought my son was rapid cycling bi-polar before the Asperger's DX. Yes, I have a little knowledge of psychology (including working in a therapists office), but got blown off by the doctor he was seeing at that time. After a few false starts, some medication failures and various issues, we've begun seeing a psychiatrist who is a dream. She had the same philosophy that we did, one medication at a time until we get results we like. We're doing well with the two right now, but are still tweaking and may add a third.
As with many people with Asperger's, my son has an 'alphabet soup' going on.

The meltdowns are a fact of life. Many Aspies do get them under control when taught coping strategies. We're still in the learning phase in our house. We know many of the triggers and have eliminated what we can.

This past summer, it got really bad, to the point that hospitalization was considered. That's when my son's school program gave us the name of the wonderful doctor he's seeing. I was so frustrated, that I was willing to do anything to help him, even if it tore me apart.

I don't know if you've picked up any of Tony Attwood's books. I bought two of Asperger's Syndrome, with the second copy making the rounds of anyone who has extended contact with my son (day care, relatives). There are other great books out there that I haven't picked up yet, but I intend to get Patty Romanoski-Bache's book.

Which leads me to another resource. Barb Kirby runs an amazing site, www.Aspergersyndrome.org. There is a great message board. It was my lifeline on many days when I thought I was at the end of my rope. Sometimes, just hearing 'me, too' from other parents made me realize we would help my son to become the best person he can be.

On a more personal side, we have lots of allergies in our family. I did food journaling briefly to figure out triggers and cut out a few things that I was pretty sure were causing the meltdowns. We found that a family allergy to certain food dyes are a big problem (especially today, when he decided that he wanted a lollipop and some Nerds when babysitter was in the bathroom! twenty minutes later, boom, major blow up!). He also seems to have a problem with nitrates, and so we've removed a lot of processed meats. It's really helped us.

His medications are finally on the right track. When he needs to come down from a meltdown, I've taught him to close his eyes(overstimulated) and breathe deeply. Your son will figure out what helps him out...mine is also 7 1/2, and he now will say "I need some alone time" and go play by himself. His favorite thing is to close himself in the half bath and read or play the gameboy, because it is confining.

Good luck. Feel free to email me anytime...for the first time in our lives, my husband and I don't feel like we're lousy parents.

Suzanne

 

[SueM in MN]

Looks like you really got some good advice from people who are traveling on the same road as you are.
Just sending more hugs and pixie dust. and I'll be praying for your family.
It's very easy as a parent of a child with a disability to question, "Did we make the right decision/choice?" or to go back and say "What if we had done this." I've done it many times myself and try very hard not to do it. I can't un-do and there are no guarantees that if I could, things would turn out any differently.
Whatever decision you make, however it turns out, you made the best decision you could at the time that you made it, knowing what you knew then. As s&k'smom said, follow your mommy instinct and you'll do what's right for your family.
{{{hugs}}}

 

[tmli]

Thanks for all the good wishes. Suzanne....if I understand correctly it was your sons Aspies that was masking itself as Bi-Polar? What meds is he currently taking? My ds was on Paxil for his fear and anxiety, clonindine to help him sleep and dexedrine for his ADHD.

Have any of you experienced some meds that work better than others? We are weaning him off Paxil and clonindine now and possibly the dexedrine next week. We, too, started with one med at a time. But because the symptoms and diagnosis kept changing so did the meds...like I said before I don't know what is my son and what is the meds.

I still think we are better to get him off everything and start over.

We've also noticed certain foods can trigger various behaviours....the food dyes being one. I need to do some more homework on that one. My ds has a list of only about 10 foods he'll actually eat, so this should be fun!

 

[Poohnatic]

From what I was seeing, and what I'd seen at the practice, my son was definitely exhibiting what looked to be the manic behaviors...with depressive episodes that really were the typical Aspie meltdowns. His highs are ridiculously high.

Since he's got Asperger's, ADHD, OCD, SID and probably a couple of other things, we had to weed out what was the most important issue to treat first. The OCD actually was the first thing that was successfully treated. He's on Luvox, and we're on the first week of a higher dose. We find that it 'lengthens the fuse' and we get about 10 seconds to calm him before a possible explosion. Without it, the meltdowns are instantaneous and take longer to get under control. He also can be talked out of a perserverative episode now that he's on the Luvox.

We went through the nightmare of almost all the stimulant ADHD meds, with each one having more extreme results than the last. I have a medicine closet full of Ritalin, Concerta, Adderal, Focalin and a few others. Finally, the new doctor assumed that the stimulants do what they're supposed to with him, so lets go with a non stimulant. He's on Strattera, and my gosh, he's a different child. He is still very noticibly an Aspie, but the behavioral issues at school and daycare have dropped drastically.

His special ed program is targeted for kids with PDD/HFA and Asperger's, although they don't have that label. The class seems to be mostly those dx's, but not all in the program have those disorders. Before the meds, the daily behavior report card, on a good day, would be in the low 60s. He's now averaging high 80s. Transitions are still his biggest challenge, but now he'll say 'but I don't want to' and perhaps stomp his feet instead of falling apart.

When my son eats something he shouldn't, we can tell fairly quickly. At the day care over the summer, he had a few days where I had to come get him. First question I would ask is 'what did you give him for lunch?' and I'd find something in it that he shouldn't have had...pop tart for snack one day was the straw that broke the camel's back. I don't journal anymore, but two to three weeks of it and you will see patterns.

Again, feel free to PM if you want more info. Hang in there, it will get easier. We have a nephew (adopted) who is also Aspie, and he's become a fine young man! My DH (his uncle) was on the phone with him at Christmas and was asking Michael about his 'fixations', and Michael would stop him cold with "I don't think it's a good idea for me to start talking about xyz". My husband said it was like taking to our son as a 20 year old, and that maturity will help him out.

I'll leave you with this...I'd heard that Bill Gates and Al Gore are probably Aspie. Friend has done security detail for Al (and is pretty close to my son). When I mentioned it to her, she thought and said he seemed to be a lot like DS! It gave me great hope for the future!

Suzanne