Feel helpless when my ASD son has meltdowns

[littlestar]

My son is six years old. We started to notice there were problems with him when he was about 3 to 3 1/2. Then he was diagnosed at 4 and 1/2 with ASD.

Now he is in grade one, regular class. He has been very good at school and after school program. The teacher told me it would take a very experienced teacher a while to see he is bit different. He is very social, focused and relaxed at school. Knock on wood.

The only therapy is one and half hour social group on CAT with an ABA therapist. Even his therapist told us people can’t tell he is on the spectrum.

He enjoys team sport, like soccer, basket ball, but he is physically weaker compare to same age kids. He likes boardgames.

We tried different playdate with him. He does not like to play with kids on the spectrum and complains that they don't listen and follow the rules. He makes friends very easy but get upset by kids very easy as well.

The problem is he is so on the spectrum when he with us. He has very high anxiety, very controlling. Those anxieties will lead to meltdown time to time with us. When his team loss games, he would be OK, but he losses to us, he would be upset, and some tantrum. He is very competitive. All he talks about at home with us is who is the best play in tennis, best team in basketball, soccer, football.... biggest shopping mall, store…. He would not do these in school or with friends. But he would ask them which level of skating are they.

We felt like he knows what he should do and how he should react. He told us the social group which meaning focus on emotion and emotion control are not going to work with him. When I work with him on some of  the activies chart on worries, he seems to know everything.

Time to time, I felt like I don’t know how to help him to better deal with anxiety. I felt exhausted and helpless when he has a meltdown, also embarrassed if it happen in public because he will hit and bad mouthing.

I am not sure if we keep him in the social group or looking for something elase.

[Emmeline II]

Maybe he would benefit more from one on one therapy instead of or in addition to the social skills group? And/or speech therapy to work specifically on pragmatics.

Has he been reevaluated since the initial eval that diagnosed Asperger's?

Ds' primary diagnosis is ADHD, but Asperger's is on the table as well; his social difficulties are his strongest symptoms--though overall he is doing much better socially this year, which I think has some relationship to having less anxiety--his primary antagonist last year isn't in his school anymore, which helps, but he seems to have matured a lot over the summer (I didn't have to hover when he was playing at the pool), and his "tantrums" at school (usually complete communication shutdown) last seconds instead of minutes. He still gets upset when others don't play/follow the rules, though that is primarily an issue at playplaces and the children's museum. We're still working on being a good sport when playing board games at home with us but his negative reaction is largely confined to pouting for awhile.

About 6 months after the ADHD diagnosis by a psychiatrist (August last year) ds had an evaluation at a behavior clinic at a children's hospital (February) which was much more detailed than with the psychiatrist and gave us a lot more information to work with. When ds received the ADHD diagnosis he began medication and behavioral therapy. We ended up in a similar situation where ds could tell you how he is supposed behave/respond but that knowledge wasn't showing in his behavior, which is basically what his therapist observed as well--this didn't change until shortly after the hospital appointment when he was switched to the second dose of his second medication; all of a sudden he was putting what he had learned in therapy into practice (March), and at that point he also had a breakthrough in empathy as well.

[littlestar]

Thanks for the reply.

We did one on one ABA for eight months last year in his daycare. He did not like it and had a lot anxiety going to daycare whenever there was therapy session. We did not find much help except extra anxiety, so we stopped it. But continue with the social group the lead therapist sugguested.

Currently, school only provide minimal support, which is two time a week of one hour social curriculum with special need teacher. I had requested an OT assessement, but was told he has absolutely no sensory problem at school. I had asked for SP, but was told he has no language deley.

The point is he is quit 'typical' outside, but autisic with us. A lot of anger or tantrums happen at night. sometime at bed time when he starts to process things in his mind. I could hear him muttering the names of kids at school. Then out of blue, he will start to cry saying he wants to change school, so and so is bad, and ....

We did consider medication, but since he is still doing well at school and afraid of the side affect, we put the medication thought on hold for now.

[RiverTam]

I might try cognitive-behavior therapy or rational-emotive therapy for dealing with his anxiety. He really sounds like he's working very hard to keep his anxiety under control at school, but letting it all hang out when he's home because he is safe there. 

Poor kid. It must be awful to be that anxious. 

CBT and/or RET therapy has a long track record for teaching people different ways to deal with anxiety. It might be very helpful for him. 

RET is a DIY program. These two books might be helpful:

http://www.amazon.com/Control-Your-Anxiety-Before-Controls/dp/0806521368/ref=sr_1_1?ie=UTF8&qid=1322081359&sr=8-1

http://www.amazon.com/Raise-Emotionally-Healthy-Happy-Child/dp/0879802081/ref=sr_1_1?s=books&ie=UTF8&qid=1322081405&sr=1-1

[FarmerBeth]

Our son, like yours, has a lot of anxiety and also in theory understands everything in his social skills class.  Two things that helped were: 1)switching to working with social skills in a more real life way.  Now DS volunteers and goes to swimming with his social skills group.  He's encouraged to converse with others on the bus, order his own meal from Subway or a snack from Tim Hortons (this is an actual part of the program), make small talk with people at the pool or in line-up, etc.  The YSF teacher (the one responsible for facilitating special needs services) mentors him where she sees he needs help. 2) Group therapy with other kids for anxiety.  We used "Cool Kids" and DS benefited from meeting other kids with similar difficulties and we, as parents, really benefited from the support of other parents (the parents had their own group work while the kids were in therapy).

We currently do have DS on medication for anxiety.  In his case, we've seen a remarkable improvement in his ability to regulate his emotions (especially anxiety), be less obsessive, and apply social skills.  When deciding about medication, I suggest looking at how you feel your son is functioning overall, not just at school, when making a decision.  Just because he can hold it all together at school doesn't mean that it's good for him or that he will be able to continue holding it all together in the future.  I also wouldn't go by worry about side effects.  You don't know without trying.  Our son is experiencing no side effects, someone else's child might be experiencing very difficult side effects on the same med.  It's hard to know without trying.  Always, your child's overall well being should be the deciding factor, so if you're feeling that your son's anxiety is impacting his ability to apply social and behavioral skills, then you may want to discuss options with a developmental pediatrician.

[littlestar]

We are doing CBT social group with DD now. We can try DIY RET. Then maybe medication if it's a must to control his anxiety or OCD.

Thanks everyone for your wonderfull sugguestions.

[boobybunny]

My oldest struggles with meltdowns.. Now he recognizes the need for protein.  He's a freshman in IHS right now and ironically just asked me to bring him a burger or chicken stick for after school...before tutoring.as he didn't pack his lunch with a protein snack as well as a his main lunch protein.  He has had enough self awareness and self advocating education that he can feel the meltdowns start LONG before they actually show themselves.  His 504/IEP states that he can remove himself and get something to eat before returning to class, or whatever.  Stuff still bothers him, but he is able to cope with the feeling of being overwhelmed. 

Yes, he is Dx with ASD and ADHD... on adderal. 

Sleep and protein are amazing for kids who struggle with this issue.  I can tell the moment he walks in the door if he has had enough protein..when he was a young child I kept a jar of shelf stable peanut butter and tongue depressors for him in the car.. instant peanut butter popsicles..

And yes, I know these are the 'bad' foods.. but at 6'1" and 145lbs.. it's worked well for us. 

(and yes.. he eats a high protein, large breakfast every morning)

[littlestar]

He is very slim. I always think he need more protein. Maybe more meat.

[buttercup]

I am not sure if he would be open to this, but it benefits my 7 yr old ASD son who is in a regular ed class and is very high functioning.  He also gets anxious about a variety things.  He will have a meltdown or just shuts down.  One of the things we have done is created a social story that he can refer to on specific issues to help work through the issues.  For instance, he would get so upset when the teacher called on another student for an answer to a question.  He apparently knows all the answers and desires to answer all of the questions.  We created a social story that he could refer to when he was feeling anxious or upset where he would forget what to do at that moment.  The social story would remind him that the teacher wants to give other students a chance to answer the question and to not worry for she will call on you when it is your turn.  Stuff like that.  Just trying to offer another idea.

[littlestar]

Thanks Buttercup. Social story is great.

Time to time, I am not even sure if he has ASD or anxiety disorder with OCD. He knows everything but just can't control himself. Things like next week school has potluck, so I told him I will bring perigees to school. For the past few days, he kept asking me what if other people don't like perigees. I asked him if he likes everything from other people, he told me no. I asked him if you don't like it what do you do. He told me he would not eat it. So other kids can do the same. He was OK for that day, but brought up the topic again two days later.

He would tell us things like:" if I loss my staff, I will cry until you buy me a new one."

He would tell my husband after his skating:" Dad, I gave you two choices, take me to eat fries or I will cry. If you call mom, I will cry." He would not say things like this to me.

He is consistently listening other people's conversation, look at what other people do. We are so tired to be around him because we consistently have to be aware what comes out of our month.

[ErinYay]

As someone with both pretty severe anxiety and mild Asperger's, I really feel for both you and your son. It's *really* hard to not get caught up in "what will others think? I must plan every second of my day to be sure I can cope, because otherwise people will know I'm weird." This weekend I took the girls to a new friend's house. She's a friend of my husband and he was getting really exhausted with all my questions- what will we be doing, who will be there, will they like me, what should I say, how should I act, what kind of jokes do they tell, ad infinitum. Intellectually I don't give two figs about what other people think. Emotionally and neurologically? I really, really care a lot, and it sucks.

The rough thing with ASDs/anxiety is that even when you're not expressing your anxieties about things to come, they're still there. It's exhausting to constantly have lay in bed running through your lists, and it's really distressing once you realize how exhausting your behavior is to others. Unfortunately, talking through the planning anxieties helps more than silently simmering. I say "unfortunately," as the family bears the stress of planning as well. Picture schedules can help a lot, as can simply reminding the kid of what's to come, constantly, all day.

As your son gets older he'll realize that no amount of planning and fretting will change anything. Routines get disrupted, surprises happen, but that intellectually knowledge doesn't stop the barrage of "okay, what am I going to do if xyz happens? What if abc happens? What if what if what if..."

I wish I had something better to tell you. If he's on the spectrum, or "just" has anxiety/obsessiveness, his brain is wired to make him worry about what to do, how to do it, when to do it, etc. It's a stressful way to live, and I'm sure it's very stressful to live with someone like that.

[littlestar]

Thanks Erin to let me know the insider view.

He does quietly simmering a lot each night prior felling asleep. I can't hear much, but most I heard it's kid's name in his class. He would repeat many time on the name of a little boy that he does not like. When I ask him, he would tell me he is very tired and does not want to talk.

He is doing well at school. academically, he is at top of the class, socially teacher told us he has no problem playing with others and no problem asking other to play with him or sharing. I am worried that he hasn't made a best friend this term. When I ask him, he told me he suppose to play with many people, not just few people. everyone is his friend.

Because he is doing well in school, that's why my husband does not agree to put him on any medication.

He is very affectionate with me and fight with me a lot as well.

I kept telling myself I must own him big time in previous life, that's why I have to pay him back this life.

[ErinYay]

If you're considering medication at all, it *may* be worth it to look into a tiny dose of an SSRI. My 14-yr-old birthkid is spectrumy and has been on 50mgs of Zoloft for almost 2 years, and it's really helped ease the obsessiveness and rigidity for her. I started on Zoloft myself about 2 months ago. I'm now at 25mgs a day and the difference in my general anxiety level and need to plan every iota is really remarkable.

For depression, 25/50mgs is nowhere near a therapeutic dose, but the literature seems to suggest that microdoses can really help those with ASD, anxiety, and OCDish things. I personally would be careful putting a very young kiddo on an SSRI due to the increased suicide risk in children/adolescents, but it could help a bit, without the really nasty side-effects one gets from anti-psychotics (which I feel aren't needed for high-functioning individuals).

Good luck! You sound like a wonderful momma.

[littlestar]

Thanks Erin.

[foreverinbluejeans]

It sounds like he may be doing too many activities and may need more down time. "Normal" kids have problems with behavior when they are tired, hungry, or bored. Special needs kids even more so. If a typical kid can tollerate 6-8 hours of activities a day a special needs kid may only be able to handle a few hours. There was no way my special needs child could have ever gone to school even as a teen. There are homeschooling "experts" that believe that formal group educational experiences shouldn't begin before jr high age. Many states don't require school until age 7. We probably start school too young and the school day starts too early and lasts too long. You might try going to school for a whole day as a volunteer and see how calm you are when the day is over. If he is going to go to school he may not be able to do other activities during the school year.  

[littlestar]

I don't think there are too much activities, and he has very long day at school from 8:25am to around 5pm. Both of us works, we are trying our best to shorten his days.

Beside school, he has social class (CBT), basket ball class, hockey and soccer. But he told me that he wants them all except social class. His therapy told us he might be boarder-line gifted. We admit that he is very smart, but he does not like to study.

He told us he only likes recess and gym at school. Time to time, he would tell me not to pick him up early because he wants to spend more time at gym (gym time is at end of the day).

He has been begging us to give him a baby for a while. To us, we felt he is very lonely. He want to have play date all the time. He does not want to play by himself.

For us, we are done with the baby part due to age. this makes him very sad. He cried few times already. this makes us feel really guilty.

I think I will get him a dog soon. I have a feeling that having a dog will help him a lot. We had no experience with dog, so we need to do some research on dog.

[fiddlefern]

Littlestar- I think the idea of a dog (or a friendly cat- less work!) is a great idea.  My son, who is 7 has an IEP for a communication disorder, though I think when we get a medical eval soon it will be ASD.   He pets his cat a lot when he gets home from school, and it really helps him calm down.  Though our schedule gets busy sometimes, I always drop the schedule for a few minutes when he wants to pet the cat, because I know it will make whatever is coming next easier for everyone.

ErinYay- your posts about your inner thinking process are amazingly helpful and insightful to me.  You are giving me a window not only into my son, but my husband, who has an anxiety disorder and takes a low dose of effexir (sp?) to cope with it.

[DanishMom]

To ErinYay,

I'm a little late but....

I saw a video on youtube - a girl in highschool who talked about how it feels to have aspergers. I found it extremely helpful. More so than books written by experts. I agree with littlestar that your inputs are of great value.

I really recommend listening to personal accounts on youtube. This girl made me realize why my son feels the need to throw clothes that trickers his sensory issues far away instead of just putting it down. I also like Temple Grandins documentary (also available on youtube).

Anne

[beachcomber]

Originally Posted by ErinYay 

As someone with both pretty severe anxiety and mild Asperger's, I really feel for both you and your son. It's *really* hard to not get caught up in "what will others think? I must plan every second of my day to be sure I can cope, because otherwise people will know I'm weird." This weekend I took the girls to a new friend's house. She's a friend of my husband and he was getting really exhausted with all my questions- what will we be doing, who will be there, will they like me, what should I say, how should I act, what kind of jokes do they tell, ad infinitum. Intellectually I don't give two figs about what other people think. Emotionally and neurologically? I really, really care a lot, and it sucks.

The rough thing with ASDs/anxiety is that even when you're not expressing your anxieties about things to come, they're still there. It's exhausting to constantly have lay in bed running through your lists, and it's really distressing once you realize how exhausting your behavior is to others. Unfortunately, talking through the planning anxieties helps more than silently simmering. I say "unfortunately," as the family bears the stress of planning as well. Picture schedules can help a lot, as can simply reminding the kid of what's to come, constantly, all day.

As your son gets older he'll realize that no amount of planning and fretting will change anything. Routines get disrupted, surprises happen, but that intellectually knowledge doesn't stop the barrage of "okay, what am I going to do if xyz happens? What if abc happens? What if what if what if..."

I wish I had something better to tell you. If he's on the spectrum, or "just" has anxiety/obsessiveness, his brain is wired to make him worry about what to do, how to do it, when to do it, etc. It's a stressful way to live, and I'm sure it's very stressful to live with someone like that.

OMG. Thank you so much ErinYay. This post has made so much sense to me and I was incredibly grateful to read it. I am the very anxious (GAD) mother to a very anxious Aspie with separation anxiety disorder. I can't tell you how hard it is to see her struggle and to constantly push myself to do things I find really uncomfortable because I want to model the right attitude to the kids, etc. You're so right that it's about wiring and that the brains of anxiety-prone people just filter things differently. We don't choose to be this way. Life simply IS this way for us and we do our best not to let the fear, worry, anxiety, whatever you want to call it, stop us from living. But oy. It's hard.

Having anxiety myself, I ache for my DD. I know how she struggles with it, how it controls her at this stage of her cognitive development. I get really sad for her sometimes. Life is so much harder for her than it should be, you know? It's so unfair!

[mamarhu]

I hope this will come out in the tone I intend it - not at all as a how-to suggestion, but rather as a light at the end of the tunnel hope.

YoungSon, now 15, and diagnosed with PDD-NOS, SPD, anxiety, and dyslexia, was really quite seriously affected as a young child. The years from 4 to about 12 were truly rough, for him and those around him. He didn't speak until he was 5, and then ONLY to his sister and me. He did not function in school - so bad that I took him out at second grade. His diet was strictly limited to french fries, potato chips, and popcorn (I am not exagerating - look back on my old posts from a few years ago!), and he could not read at all until he was 13. We regularly had meltdowns in any public place with too much sensory input (like a grocery store), yet he couldn't stand being away from me for even the briefest time. You can see the problem here - I am a single parent, and occassionally shopping MUST happen. I was unable to work out of the home all those years because of his level of needs. He was fairly social with other kids in the neighborhood, but never really had a friendship in the usual sense. At this time, his IQ tested at 72, although I knew that was not accurate.

Although we tried various tutors, therapies and meds over the years, nothing had any impact at all. All I could do was to structure his world so he could handle it. I had a home business to support us, and his "schooling" was pretty much limited to museum trips, when I knew they would not be crowded. Even then, we often did not leave the house for days or weeks at a time (thank goodness for grocery stores that deliver). He certainly couldn't handle therapy, individual or group. I had years to grieve for the "normal" life I thought my son would never have. I had really given up on him ever learning to read, let alone becoming a functioning, independent adult. I never put any pressure on him to be someone he wasn't, and had pretty much resigned myself to care for him for life.

Somehow, his brain has suddenly matured, surpassing all expectations for his development. In proud moments, I attribute this to the extremely low-pressure environment I was able to create for him. When anxiety kept him from going out, we simply stayed in. When he couldn't read, I read to him. I quickly gave up trying to improve his diet. Although I have high expectations in the realm of politeness and interpersonal stuff, I never demanded he push his limitations. In more realistic moments, I think he would have reached this stage, regardless of interventions. I would be extolling the virtues of whichever therapy coincided with his development. At times I have felt guilty for not trying harder to find a therapy that fit; other times I trusted in my instinct that he would develop as well as he could, on his own schedule.

In the last couple years, he has changed so much. He reads at 8th grade level. He attends a small alternative school (totally his choice), has friends over to the house, and, get this, takes public transportation by himself all over our city to visit them! He eats a full range of healthy foods, as well as his share of junk food (he is 15, after all). Last summer, he volunteered at a local food bank, again all his idea. Academics are still a challenge, but the anxiety has virtually disappeared. Or, more accurately, he has taught himself to manage it. His IQ tests today at 120 (not bragging, rather critisizing the tests!). He has career plans, and we all foresee a fine if quirky life ahead for him. He will always be autistic - that is his charm, as well as his challenge.

I hope this post did not come out sounding either anti-therapy, or promoting my radical, laissez-fare approach. I really meant it all to say: There is hope. Kids outgrow even the toughest behaviors. There is no predicting outcomes in this parenting business.