Newbie. Need help ASAP. Long.

Post Reply New Topic

Hi, DW a mom.

- First, I want to tell you how much my heart goes out to you for all you have been through as a family. I am sure you are very, very tired; you have had SO much on your plate.

Thank you. Validation is sweet from time to time.

- Second, there is good reason to suspect AS in the family, and since there is a genetic component it is quite possible that your husband and your sons all have it - or have parts of it, like I do (my son is diagnosed AS, and I probably wouldn't be, but since some 26 genes may be involved componitization happens).

That's very interesting information. I have little "quirks" myself that I never gave a second thought to, but started thinking about while doing research. Then I started thinking that I was starting to "see" things. You know that saying, "when you're a hammer, everything looks like a nail"?

- Third, the schools have limited resources and, so, for them, "fine" is good enough. But it isn't. Society gains the most when all children reach their potential, and it sounds to me like your children have something holding them back from that.

Agreed. Most definitely.

- As parents, we have the job of seeing to it that our kids aren't just "fine," but are acheiving and succeeding in the way they were meant to. To get the school to help, you have to find the right box for them to check. No box, no help. That is actually how we got our son diagnosed: I knew there were problems, and I was being told they couldn't do anything. So, I asked, "when CAN you do something?" Based on that answer, we pushed for an IEP assessment, and in that process it actually was the school who identified the AS. Yes, it turns out we have an amazingly aware elementary school, and I am grateful for it.

You are very fortunate. My youngest son was having so many problems, both in school and out, getting in "trouble" because he "wouldn't" follow directions, etc. (The kid would just freeze when he got overwhelmed. It still happens.) A person might think that it "something" might be going on, but anytime I tried to approach the subject, again I would hear the same old song, "he's fine". I didn't a response until I hired an attorney and demanded a PPT. They STILL only gave him a 504 based on his hemophilia and told me they didn't find any disability because he tested fine, even though they noted on his report that he was medicated! Gee, I wonder why he was able to pay attention during the testing? This school district makes me NUTS. Given that I didn't know my/his rights, I submitted to their inclinations.

- Fourth, ADHD kids often are AS. Either misdiagnosed or having both. It is worth sifting sand to get it right, as the protocols are different.

I absolutely agree with you, both for sentiment sake and also that my personal research bears that out. What I am wondering is how to approach that in terms of asking for testing because I could bet every last dollar in the known universe that these folks are digging to NOT find anything.

- Fifth, I worry about your teenage son being on anti-depressents. We've heard some horror stories here with teens and certain medications. It is much, much better to deal with the underlying stress factors than to medicate. But, since he's on, you can't just pull him off. Just, please, be very careful if you start seeing out of character behaviors, or things get worse. Don't get onto a cycle of replacing or adding on medications; clear him out of them first.

Point taken, and our similar objections were registered with the psych when we started. The dose is very low and it did help, for which I am thankful, but I will bring up this new information regarding SID/AS possibilities at his next appointment and that WILL be considered before anything else is.

- Finally, does your husband know where your research has led you? If he starts reading what you have, he may see AS in himself. This is one area where you cannot and should not force realization upon him. Some adults get very upset when confronted with the possibility; others find relief; but there is no way for any of us to know what that road would do for him.

He knows a little bit. I believe, from my research that AS fits him to a "t". But he definitely deals with overload, if nothing else from his extremely demanding job and the knowledge that our youngest son's life depends on the medication and the insurance that pays for it which we get solely through his job. His overload was obvious even before our little bundle of blessings/emergencies arrived. I never understood before these past couple of months "why" he was always SO mentally exhausted, and not be able to deal with the emotional aspect of our family life AT ALL, but now I think I "get" it.

I'm very cautious about showing these things to him because he takes EVERYTHING personally, and I don't want to hurt him. My plan at this point is to pursue what avenues I can with the boys, and see where that leads us. My hope is that he will finally find himself in his boys, and not feel so alone.

- You wrote so much and I had so many thoughts reading through it, I don't know if I've addressed them all. AS or not, the members here can help you sort through the process and find the best paths. You must be an amazing mom; you've already come a long, long way.

Thank you for your kindness in just reading and sharing what you did. We have gone so long with so little support, that I no longer take for granted that people "should" help each other. Yeah, it's nice. But I can't stop trying and fighting because nobody understands. That's what makes me the saddest for my males, because they truly believe that nothing will ever change. They hope a little from time to time, but won't go "out there" because of so many disappointments. The silver lining is that they have each other and I will do everything in my power to keep us together. I used to be that negative, but they're worth fighting for and for sure, if we don't try at all, nothing will get better. Sorry again for the "book".

Thanks for everything.

Hi Mother Knows Best.

- This was a life saver to me. It was like it was written about my child. There were lots of things in there that were just like her, but that I'd never mentioned to the pyschologist as I never realised it was relevant. It helped me get the right diagnosis as it showing me what information was important.

It sounds like something I'm looking for.

- Also there are really detailed self assessment sheets in it, which really helps focus you on precisely what your child has difficulty with and what they don't. It is really well written as it says what the trait is and then gives specific examples of what this means and looks like.

Sounds awesome.

- In fact, here is the checklist online:

I did click on the link, but for whatever reason, I was denied access. The good news is that the book is available at my local library, so I will be picking that up asap.

Thanks again for everything.

Since I'm on-line at the moment, I thought I would try to respond to this bit from the conversation between you and Callista:

There is a certain amount of information on-line, and you can talk to your doctor. The specialist most likely to be in-tune is an occuaptional therapist, and some may actually specialize in it. Be aware, however, that some in the medical profession consider the whole area a bit of vodoo medicine - our pediatrician does. Not that he doesn't believe the sensory problems are real, but that to him the best way to deal with them is to "know your child." And, well, he does have a point - understanding how one experiences and reacts to the things around them is step 1 to figuring out how to mitigate the negatives involved. We never did the official OT therapies for sensory integration, but a friend of mine did, and she felt it was very helpful to her child. Other things like weighted blankets and earphones involve a certain amount of trial and error, and plain old common sense. The OT my son did eventually get through the school was very specific to his physical issues. Over time, we've all learned what triggers him, and developed our own systems for helping with it. It really depends on how you like to approach things in your own unique family. But definitely be aware that members of your family may be painfully affected by things that make no sense at all to you - the flushing of toilets, the sound of a heat register kicking in, bright lights in a grocery store, the visual excess of certain stores, the feel of fabrics, the texture of food, and more. Not just dislike, but painfully sensitive to, and it is very real. Understanding that and adjusting the environment accordingly goes a long way towards making life happier.

Hi DW.


-Since I'm on-line at the moment, I thought I would try to respond to this bit from the conversation between you and Callista:

-

- There is a certain amount of information on-line, and you can talk to your doctor. The specialist most likely to be in-tune is an occuaptional therapist, and some may actually specialize in it. Be aware, however, that some in the medical profession consider the whole area a bit of vodoo medicine - our pediatrician does.

Thank you for the heads-up.

Not that he doesn't believe the sensory problems are real, but that to him the best way to deal with them is to "know your child." And, well, he does have a point - understanding how one experiences and reacts to the things around them is step 1 to figuring out how to mitigate the negatives involved.

That is a good point. And one which I am seriously thinking about since there are many issues that I have to deal with at the same time, and it is important for me to pick my battles, especially in terms of time and energy.

- We never did the official OT therapies for sensory integration, but a friend of mine did, and she felt it was very helpful to her child. Other things like weighted blankets and earphones involve a certain amount of trial and error, and plain old common sense. The OT my son did eventually get through the school was very specific to his physical issues.

That's interesting. I'm assuming that your son was evaluated through the school system, since they did support him with OT?

- Over time, we've all learned what triggers him, and developed our own systems for helping with it. It really depends on how you like to approach things in your own unique family. But definitely be aware that members of your family may be painfully affected by things that make no sense at all to you - the flushing of toilets, the sound of a heat register kicking in, bright lights in a grocery store, the visual excess of certain stores, the feel of fabrics, the texture of food, and more. Not just dislike, but painfully sensitive to, and it is very real. Understanding that and adjusting the environment accordingly goes a long way towards making life happier.

Thank you very much for sharing.

Alright. I can't pretend to imagine the stress you are feeling right now. And I can't pretend to know the "answers" - if there is such a thing.

What I can say is this;

You, you yourself, seem incredibly overstimulated. You have too much to think about. I am concerned that you are so worried and stressed about the members of your family, that you are not taking care of yourself.

You must take care of yourself first.
You need a break.
Find a way to get some time to yourself. A class. A babysitter. A break- however you can manage it.

I really think that if you continue trying to manage and figure out everyone elses' problems, you will break down - and subsequently become unhelpful to those who you want to help most.

There may be things you can do to help, to manage, to make life easier for those you love. But there might not. The best thing you can do for your children/family is to give them love and acceptance. Despite school problems, communication problems, or whatever weirdness happens. In order to do that, you must be intact.

Please, take a time out for yourself. MAKE it happen. It's important. You can't fix everything for everyone. Realize your limitations and be kind to yourself.

Hi Vivienne.

Thank you for looking out for me.

You are right. And the logic is pretty obvious to everyone, including yours truly. That said, there are very few practical resources for me to do anything "extra" for myself at this point.

Even if there were money and most of all, any extra time, there are few child care types who want to look after a border-line suicidal teen, and a sleepwalking hemophiliac, and even fewer who can drop everything to take over while I run the said sleepwalking hemophiliac to the ER at 4 am, or to the hospital for mandatory 48 hr. hospitalization when he gets a temp of 101. Husband needs to work long hours to keep the job which provides insurance coverage for the medicine which keeps our little one from spontaneously bleeding anywhere in his body at any time, even without injury.

It would be awesome for the educational system in our town to not add to our load, but complaining about it doesn't help reduce stress. It does help me to stop accepting their nonsense, learn what is really going on with my son, and stand and fight back.

I have made my health a priority, and while I can't make a lot of things happen, I am committed to resting as much as I can whenever I can because it only makes sense.

Thank you for the reminder because I believe in confirmations and you're not the first to bring this to my attention in the past 24 hours. Thanks, very much.