Crumbling under the weight: Autism/Bipolar

Lizze and I are crumbling under the weight of everything. Emmett John (EJ) is becoming extremely difficult to manage. He screams and breaks things almost constantly it seems. He targets Elliott Richard (ER) and Lizze and physically assaults them. ER has scratches on his face and back and bumps on his head, all from EJ. Lizze’s face is all scratched up from EJ clawing her for seemingly no reason at all.

EJ is angry much of the time. At least it feels that way. There is no way to know for sure what he is feeling because he still doesn’t talk. He will walk through the living room and throw or smash literally anything he can get his hands on. I think it’s pretty obvious he’s frustrated with life. We are trying everything we can to make things easier for him. We still have a ways to go before any real help kicks in.

I’m going to make some sight cards today and see if that helps in the communication area. We will still keep using the words as always but also point at the same time and maybe that will be easier. At this point I’ll take anything that will help.

Lizze is getting worse. Her migraines are worse and body pain is worse. I can hear her joints “pop” from across the room. It’s truly a horrible sound and I can’t imagine it feels any better then it sounds. She is so stressed out and I can’t seem to find a way to help her.

Gavin is continuing to regress. He had a horrible day at school yesterday. He told his teachers he was afraid we wouldn’t love him anymore. That was bullshit and a complete manipulation of the teachers. We don’t punish him for what happens at school cause he already met with the consequences during the day. We do however, insist on discussing what happened so we can learn how to better manage things in the future. Getting information from him is like pulling teeth. He doesn’t “remember” what happened. He doesn’t “remember” being sent to the office two times yesterday.

We are very clear that he’s not getting in trouble but we want to hear from him what happened. We want his perspective or insight. This inevitably leads to a meltdown and him having to go to his room for everyone’s safety. I’m not sure there is even a point anymore. The only thing he will talk about (to no end) is what the lunch menu at school is. He is obsessed with food.

ER doesn’t listen anymore. Honestly, I can’t imagine why. None of his other brother listen why should he. He is getting lost in the shuffle and I don’t know how to fix that. We need preschool to start. For that to happen they need to have an opening and they don’t.

No one gets just how bad things are and how badly we need help.

LT

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    • Marc on May 15, 2010 at 4:04 pm
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    I haven't been around for a while,sometimes if i think about all the struggles that we are all going through, it can become too much to handle and my brain, or whats left of it,just wants to shut down.Cheryl said something that really hit home…….what happens to my son if i'm not around???? That thought has made me change so many things that i do in life, for instance, i gave up drinking shortly after my son was diagnosed because i knew that Deb and i were all the lil man had, and he needs me to be around for him.It is a lot to think about, and sometimes i let it drive me insane worryiing about it.I thank god that i've got such an understanding woman beside me to go through this with, and if you don't have that someone special to help you through it,i have nothing but respect for you, because i know how hard it is with two parents, i couldn't imagine. Not trying to be all gloomy, just living in the real world.As always, take care Rob….

    1. You are very right my friend. I have also been struck by that realization. I need to get back in shape and keep myself as healthy as possible. A lot of people counting on me.

    • Loren on May 13, 2010 at 5:39 pm
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    hang in there. your doing the best you can guys http://www.mayer-johnson.com/downloads/trials/dethttp://www.taptotalk.com/

    1. Thanks.

    • Beth on May 13, 2010 at 5:11 pm
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    I teach children in moderate to severe autism and I am in awe of their parents. I have the highest respect and admiration for them!
    Have you tried a picture communication system for EJ? Boardmaker is a software program especially for this, but some free ones can be found on sites like do2learn.com and tinsnips.org.
    I would also suggest that some of this throwing may driven from a need for sensory input -some kids love the sight or sound of things crashing. Maybe try offering him things he can safely throw such as those cool balls that emit light when they are bounced. If you think he may like the sound of the objects hitting the ground, look for computer programs that have those sounds.
    When my students have difficult days I find it is more helpful for parents not to rehash the event but to offer it as reminder the next day ."Remember that biting hurts, so we don't bite" or something to that effect….
    I agree with the previous poster who suggested that you seek respite care for the sake of your family .
    Hang in there!

    1. Thanks for the advice. We were actually just talking about that. The sites you pointed to look to work out great. Thanks for sharing that info.

    • Cheryl on May 13, 2010 at 12:34 pm
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    I can clearly relate and see how bad a time you guys are having. My son Max can be very destructive, he tends to know who he can test in the house. He doesn't mess with me. But he bites, kicks and scratches his father. My husband is not very hard on Max and I treat Max like I treat my non-autistic son. He gets disciplined if he does something wrong, period. He cries, but I know he will get over it. Max has literally broken almost everything we have at least once. He will walk into a room and if he is pissed off, he will just throw something on the floor or break something. It obvious that he is frustrated because he can't communicate. The worst thing in the world is probably wanting to tell someone your in pain, or discomfort, you want something, but you can't. Second to that is being the parent that can't figure out "what the hell is going on."

    Does your state have medicaid? In NYC, we have something called a medicaid waiver program. Do the kids qualify for Social Security benefits? If you guys have medicaid there are usual Respite programs. Someone usually comes into the house (someone who is qualified to deal with autism) and watches the kids, while giving you and Lizzie a break. It may be for 2 -4 hours. But it allows you to have a break and not worry the kids.

    Eric and I are trying to apply for this now. It is time consuming, but we are desperate for a break as well…It is beyond stressful. You know are biggest fear is getting old and dying. I cry all the time, because I feel like I have to outlive Max. What parent want's to outlive their child, but parents of special need children want this.. Because the fear of leaving their child with strangers, is just too much bare.

    You guys are great and I know there are times you just want to break. But, you haven't and that says ALOT. Please don't think about what's not occurring, think about how much you Lizzie have accomplished despite the odds that have been stacked against you guys.

    You guys are my idols.. Don't forget that!

    1. Thanks for the feedback. Gavin is on SSI and so medicaid is attached. Emmett John is not on SSI but is covered by medicaid also. We have yet to find qualified respite care. The best option is to have our remaining family take a short class and become certified as a caregiver. Then they can get paid to provide respite care. The huge plus to this is we don't have to worry about them being safe. That is our main concern, safety. We have trusted the wrong people and so our kids have also. We try very hard not to make that mistake.

      In my daily life it find myself living minute by minute sometimes so thinking far into the future is not something I do often. That said, you are right. I don't know what will happen to them if something happens to us. We have wills in place but things change and people disappear from our lives. That is really a great point though. I hope everything is going ok for you guys today.

      Thx

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