What do I do now?????

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Oh, I am so hoping some of you can help me out here!

My DD has .... something. She is nearly six and I thought we were dealing with aggression/possibly depression. In my research I stumbled on a book about Asperger's, and I was like, Oh My God, that is my kid. She is so textbook its scary. I have gotten every book there is available about AS and PDD(NOS) that I can get at the library and researched like crazy. I didn't want to request an eval without something to substantiate it.

So today has been an awful day, tantrum wise. I called our insurance carrier (Medicaid HMO) and they don't cover ANYTHING that has to do with any ASD. Stupid me, I explained to the lady why I was requesting behavioral health services. She said they can't help us.

So I called the Michigan Autism Society and they said that I need to contact the ISD in my area. My children are homeschooled but according to Michigan law we are entitled to special eduaction services. They gave me a whole bunch of crap about homeschooling and tried to say I needed a teaching certificate, etc (which according to michigan law, I do not.) They said they can't help us at all becuase I called too late in the school year - they will set us up for an eval in October.

We can't make it till October!! I am going out of my mind trying to help my child, and help her with her tantrums but nothing I am doing is working. Days like today I just want to run away!

Is there any other resource I can maybe look into that will help get us a diagnosis and treatment/therapy?? I don't care what the diagnosis says - we just need help!

Thank you in advance!!

I'm not sure if its like this in every town, but here we have a counseling center that counsels to those that can't pay/don't have insurance. Can you call around your area and ask the counseling groups if they have such programs? That said a diagnosis will not do much for the child. A person is autistic for life and nothing will change that. The best you can do is look for what triggers her anxiety and behavioral issues and try to avoid those things. Talk to her and ask her what upsets her.

I know some on here will disagree with me, but I would monitor what she eats and see if anything triggers bad behaviors like allergies to dyes or getting too hyper on carbs and sugar. Autistics tend to crave bread and wheat products, but would do better if we consumed a lot less of it. Autistics are usually low on B-vitamins if you test them. So a little nutritional support might help. My dr has me give myself hydroxcobalamine injections weekly for Aspergers. It's a special form of B-12. The commonly available B-12 called cyanocobalamine is said to be toxic to people with neurological or CNS issues. You can get tablet form of hydroxycobalamine online which might be easier for kids though it doesn't absorb as well.

I can't help you with the resources, but I can assure you that several of us here have recently Dx'ed children, and by making some changes in routine, are seeing positive results as far as being able to "live" with our kids again and not have them melting down everyday. It will take a lot of research and an open mind on your part.

I would perhaps document a few situations you have had recently, or have over the next few days, people here can provide invaluable advice as to what may help or what you may be doing wrong.

One thing is to get to the bottom of "what" is causing her meltdowns, and look for solutions to prevent these things, or help her before she becomes completely histarical. Often meltdowns are caused by anxiety, sensory overload, or quick changes, especially when they are to routine, or take her away from something she is "involved in".

It is sort of like walking on eggshells living with an aspie. You can expect to make a lot of accomidations to her environment and the way you interact with her, and what you expect from her. She is going to need a lot of coaching and one on one support. I don't think it is a good idea to attempt to accomidate everything, as they need to learn to work through some challenges and problems and feelings, but these things should be either unavoidable or issues that you think she can "handle". For the major triggers she has, then yes, you will need to make accomidations to them.

As I said, give some idea of "what" kinds of problems you are having, and I am sure many here will have fantastic advice.

In the mean time, could you perhaps look into councelling for you as a family or just yourself? And ofcourse, reading as much as you can about AS is a great idea.

How can an insurance "not cover" something like ASD? Contact the health Department and talk to someone in the Developmental Disabilities Administration. See if they can guide you to some services or other ways to "get a diagnosis."

I agree that you need some sort of mental health counseling. Call them back-you'll probably get a different representative anyway and tell them you think your daughter is depressed or what ever you have to say in order to get some kind of support started.

Use the school system as much as you can, even if you do homeschool. You may have to temporarily reconsider homeschooling, just to get services for your daughter that you aren't able to get through your insurance, like speech therapy, occupational therapy, etc.

See what your pediatrician can do to help also. They may be able to help you with other resources.

And like Earthcalling said, keep reading.

Who told you it was too late in the school year for an evaluation?? Was it the Autism Society or the school district?? They should be able to do evaluations year round! My son was evaluated in the summer in Indiana because that's when we "found out" he was autistic.
Your insurance won't cover ASD related services but I don't see why you can't request a referral to a pediatric neurologist to rule out anything else. They can't officially diagnose, but they can rule out other possibilities and some of them can steer you in the right direction for developmental services.

Your best thing right now is to find out why your daughter is tantruming and figure out the difference between "tantrums" and "meltdowns". In the ASD world, they are two different things. The best things to aide in transitions is to work out schedules that you stick to so that your daughter knows how to predict her day.

Hi - hang in there momof3girls. I hope you find the support you require asap.

In terms of behaviour management, as many here have already mentioned, the behaviour your daughter is displaying basically has the meaning: "I'm anxious! Help me!" and requires tightening of structure across all settings your daughter is expected to function within. The solution to her anxiety is to give her a structured daily routine(I understand that you Home Ed, as do I nowadays), that is relevant to her and not based solely on your immediate presence throughout.

Important to note that while your daughter is anxious about herself, any responses about behaviour and emotions are irrelevant to her. By and large the function of a particular pattern of behaviour when presented by an ASD person is likely to have a completely different meaning than when an NT presents the same actions. Thus many ASD children and adults are inadvertantly mismanaged and inadvertantly trained to become behaviourally difficult. The process of creating a calm, happy, safe environment for someone on the spectrum, or infact anyone displaying difficult behaviour is very simple, but correcting entrenched negative behaviours is much more complex and difficult.

The clearer the control you take over the boundaries or edges of your daughter's life from this point, the safer and happier she will feel and calm will be restored. It's important to remember not to raise your voice as this will heighten anxiety and only serve to escalate behaviour. Reassuring words will have no effect, but running your daughter through known routines and activities(*a daily picture calendar/schedule is often beneficial) will grant her a sense of security from the performance of these activities and from your resolute determination as you do it. At the age of six, your daughter hasn't learned to master her anxiety and her only concern is that you make her safe when she is confused and anxious. Thus any attention is good attention as far as she's concerned. A strong, regular daily structure and routine built around her will enable her to function calmly and find her Self. Her current behaviour(from her perspective) is functional in the absence of other communication/coping methods. Her behaviour will likely get worse before it gets calmer simply because she has to test that you mean what you say and do.

Note: “Effective behaviour management requires that parents control and modify their own behaviour in order to bring about changes in the behaviour of their children.”

Control is the issue – either our children are in control or we are. Our children rely on us to be in control, thus making them feel safe.

When your daughter tests you, simply direct her politely and calmly back to the task at hand(ie whatever she's currently meant to be doing) maintaining a neutral tone and with no mention of any negative behaviours displayed. Any direct response, no matter how well meaning, to an autistic child's unacceptable behaviour, will reinforce it as a functional pattern of communication behaviour to her.

If behaviour escalates, allow her time to calm(perhaps direct her to a mini-trampoline to destress), then calmly direct her back to complete the task/activity at hand. Praise her once she has remained on task, in an indirect manner(praise through task performance ie what she does, not who she is).

Best Wishes

Thank you all so much! It is nice to talk to people who get what I am saying. So many of our family brush this off as just Elaina not being disciplined, and that is certainly not the case. She is just different from what my family expects a child her age to be.

The school district is the one who said they can't do an eval. They don't work in the summer and they said it would take a really long time. Honestly I do not care one bit if she even gets the evaluation, all that is going to do is give her a behavior a name. I'm WAY more concerned about helping her find comfort in herself and not feel like she needs to flip out at any little thing.

What is the difference between a tantrum and a meltdown? The ones we dealt with today had to do with her being angry with me. I do not allow physical roughousing with the children, because Elaina is super-hypersensitive to pain and dicomfort so it always end up to be a fight. However, when I limit the horse play, Elaina gets SO MAD like she did today - kicking holes in her bedroom wall and just generally freaking out!
BUT, that is nothing like when she needs to have a sliver removed or get a shot at the doctor or anything - THOSE times are completely different and on a much bigger scale than the ordinary anger we deal with.

When she isn't angry/cold/warm/hungry/whatever, she is an absolutely delightful child. She is very intelligent and sweet. But some days the bad seems to outweight the good, like today. I think this may be escalating because we are expecting another baby in July, and I think she is dealing withs ome emotions that she doesn't understand and can't cope with. I just wish I could learn how to help her cope.

I did contact the Gray Institute (the people who made "Social Stories" etc - they happen to be in our hometown! Yay!) anyway they gave me some suggestions about a gluten/dairy free diet. She also mentioned a heavy metal detox. Has anyone tried either of these things? Are they helpful?

I really appreciate your responses, I can't tell you what huge sigh of relief I had when I found this site!

The evaluation by the school district isn't just to give it a name. It's for placement and receiving services. That's why I mentioned it. You stated you were hoping for services. If they don't even evaluated her until next fall, it could take another 6 weeks after that to place her with services.

I understand what you are saying about not wanting to label your child, but unfortunately it is a necessary evil if you want any services for your child. You really need to get your daughter evaluated. She has a right to recieve help that she is eligible for.

There has been a great deal of discussion regarding heavy metal detox, or chelation-there is a recent thread regarding this that you may want to read.

This was the detox thread: http://www.wrongplanet.net/modules.php? ... ic&t=31024

I would read it over.

I still think it would be more helpful for you to give some idea of the exact senario of how the "fits" or "tantrums" or "meltdowns" happen. For example, with this angry outburst about the horse play, exactly what happened or was said? Often the keys to stopping a meltdown are in the way you reason or tak to the child, what works with an NT does not work with an Aspie in many situations, try to keep in mind that Theory of mind and empathy are sorely undeveloped in the average 6 year old Aspie. Usually they are impaired life long in this department, although you can expect they will learn "some things" as time goes on, and may even become strong sympathizers in some areas!

I think it sounds like your house perhaps needs a hands off rule. It is going to be very difficult for a 6 year old Aspie to define what is "ok" and what is "not ok" as far as horseplay goes.

I agree, if you want the services, you are going to need the label. However if you just want to learn how to "live with her" and every day not be a constant totrure for the summer, then reading up and educating your self and asking lots of questions about AS may help achieve some peace in your life!

Explaining what happens right before the meltdowns helps us give you a better idea of a possible trigger. With all the books take some of the advice from those since they will help you better understand your DD.

We have heard of heavy metal detox. There are some products that you can buy over the internet, but will be available later this year for OTC use. My DH works with a man whose son (autistic) is under going the heavy metal detox. What has been explained to him is that the brain stores the heavy metals which become toxic. The heavy metal detox flushes these metals out of the brain & body. Heavy metals refer to metals such as mercury. Evidently, the man my DH works w/has seen some improvement.

We have tried a vitamin therapy with our son (seen some improvement w/behavioral issues), we also use attentive child to aide in his focusing factor.

I have been reading some books lately, which have given me insight to my how my son's brain works & understand him alot better.

Take the time to log what happens right before the meltdowns. Include every detail including food, beverage, activity, activities of all other persons interacting w/DH, shows, sound volume, what type of activity she is engaged in. This will help isolate the meltdowns better.

I hope some of this helps.

Keep us posted.

Here in KY once you have requested an evaluation (and they are free withing the school system) they have 30 days to do it. Also, if you do qualify for special education services they are required to provide that to you whether your child is enrolled in school or not. Check with your Board of Education and speak to whoever is in charge of Special Education services and maybe you can get some more accurate info. It sounds strange to me that it is too late for evaluations now, they do them all year round here---even in the summer!.