Its confirmed, now what....

FranticFrummie

Mon, Jul 27 2015, 6:28 pm

First of all, don't start thinking about worst case scenarios. Nobody, not even the doctors, will know what your child is capable of doing and becoming. A diagnosis is not the end, it's just the beginning. It's a tool to help you get services and insurance - that is all.

Remember that your child is the exact same child he was yesterday, and the day before. He's the same child he was before the diagnosis, and he's the same child today. The only difference is that now you are one step closer to knowing how to give him what he needs to reach his potential.

Give yourself permission to have whatever emotions come up around this. There is no wrong way to process a diagnosis. Give your DH permission to handle this in his way, too.

Give up any ideas of projecting YOUR hopes and dreams onto him. It's not fair to any child, whether they have a diagnosis or not. All children are born as complete individuals. If you love them and keep them safe, and give them enough space, they will show you exactly who they are.

We're all here for you! Hug

amother

Floralwhite

Mon, Jul 27 2015, 9:39 pm

amother wrote:

Thank you for the kind words. It hurts me to see him do strange things but now it's just not in my head anymore. I'm having a hard time believing it because for so long people told me I was crazy but they didn't see what I saw. I'm just having a hard time processing.

This part is good news. If his behaviors aren't obvious then he is probably able to be mainstreamed.

My son is on the spectrum. I can run interference with his quirks. I know what will set him off. Things that are obvious to me are not as obvious to others especially as he gets older. My son is on a regular classroom and is quirky. I know what behaviors to tell him to avoid. He does when he can.

It is not easy. We were once in a foreign country and a stranger yelled at him on a train because my son's behavior was annoying him. My son was humiliated, but BH that behavior stopped in public.

As he gets older certain behaviors get masked. I also can talk to him about them.

amother

Seagreen

Mon, Jul 27 2015, 11:39 pm

Firstly, try to keep a little calm. Being over worried won't help the situation. I have a child on the spectrum too. I got the call to do a diagnosis when I was a very fresh kimpeturin with the next one. I can't begin to describe to you What I felt like when I was thrown into this new foreign cold world. But now, a couple years down, I see that all my over worrying was a hinderance in getting to understand the concept of this new life. I know every child is and develops uniquely, no 2 autistic or aspergers are the same. You need to speak to a therapy center like yeled v'yalda, they will help you and can provide therapy for child. Feel free to ask 2nd or more opinions. Hatzlocha Rabbo meod!! And may you see tons of nachas from him.
If I may ask, how old is child in question?

amother

Beige

Tue, Jul 28 2015, 2:41 am

I'm in your boat, plus or minus a couple of weeks. To answer your questions:
Your life with this child is going to look, tomorrow, just about the way it looked yesterday. Your kid is still the same kid you always had before you had a label on him. He still has all the same good qualities he always had. He still has all the same difficulties he had before also. Only now, because you have a name for the challenges, you can more easily communicate with people who can help you. When you're having a hard time dealing with certain behavior patterns, instead of spending a lot of emotional energy wondering if you're making some big parenting mistake or why he's doing this or whether/how you should intervene or why what worked for your neighbor/older kid/sister isn't working for you, instead of all that you can take a deep breath, recognize it as part of his syndrome, and ask others who have been there what has worked for this in the past.

That's the way I'm looking at it, anyway. The part that's making my head spin is where they say this diagnosis qualifies us for a dramatic increase in services, and they highly recommend taking advantage of it because "these kids" do better with more intervention the earlier the better, but I'm still thinking "wait, weren't we kind of doing OK?" A little different type of intervention maybe, a few more hours, but who says that it's a good idea to dump 30 hours of ABA on a kid who's basically a little off of normal? I'm just not sure, but meanwhile I am supposed to act fast to get things approved in time for the school year... sigh. On one hand I want to keep things as normal as possible hoping that will raise the chances of continuing to be as normal as possible, and on the other hand I'm scared that they may be right and if we don't do all this intervention the problems may get worse. I don't know what to think.

But still, part of me is relieved that even if I'm not entirely convinced the whole thing is real, at least someone is saying to me "We know what this is. We know what to do. We will help you now." Until now, it was just a lot of separate little pieces... this behavior, that difficulty, this missing skill, that quirk...

My big mission right now, between all the education/intervention figuring out, is to keep hold of my positive image of my child. Because I have been spending so much time on the phone with various people only talking about the issues, they're all busy and need to get straight to the point, but meanwhile my kiddo is the same great package he always was. I want just for once to pick up the phone and say to the school director, or to the special ed advocate, or whoever "Hi, I have this kid, he's 4 years old, he is the sweetest thing you ever saw. He gives the best kisses whenever I'm feeling down. He loves to help out around the house (well, a lot of the time anyway.) He loves books and puzzles and has an amazing amount of patience to work on something he cares about. He is an amazing big brother, always showing his baby sister everything she needs to know about being a kid. And his perfect smile is just the light of my life and makes my day every time."
"Lady, I don't have all day, what's your problem?"
"Nothing, I just wanted you to know that. That I have a great kid and I love him." (um, do you want him in your school now?)

So right now because of all the dealings in trying to figure out what to DO with this diagnosis, it's a little hard to look at him and not just feel the stress. But I'm sure very soon the dust will settle and we'll go on with life and hopefully with a bit of a better direction now.

amother

Jade

Tue, Jul 28 2015, 11:05 am

Hugs op.
u say that your son has a confirmed diagnosis. It is now written on paper that your son "has" fill in the blank disorder. I would encourage u to recognize that all of these disorders are a label for a group of symptoms . They do not know what is causing these symptoms. most likely there are underlying genes at play as well as damage. Neurological damage. Dr Russell blaylock, a board certified neurosurgeon discusses this in depth in his books.
I would encourage u to focus on the damage part. I'm a big advocate for therapies that aim to aid the body in repair, as I have done/am doing myself, with steady progress bH.
The conventional approach is that genetics are basically the sole cause of every symptom, whether physical, neurological, psychological etc and there is little u can do. Please do not buy this. The body is designed for repair. There r many things u can do to improve your sons functioning and hopefully pull him out of the state he is in. Dr blaylock discusses a nutritional approach. I have found that a combination of 'alternative ' therapies work best. Some things I have done:nutritional supplementation, kinesiology, repatterning, its a proccess.
I would like to remain anonymous but if u want some practical ideas maybe there is some way we can be in touch.....
if u r not interested in this kind of approach simply disregard this post. I just want to give u hope base on my own and the experience of many others.

amother

Beige

Tue, Jul 28 2015, 11:09 am

amother wrote:

No OP but very interested. I definitely feel that there is something physically triggering my child's symptoms. The way they emerged, so gradually and on-and-off, going from borderline to worse, just makes me think something is going wrong and there must be something to do about it. I cannot do kinesiology (it's complicated) but would like to hear how to figure out nutritional supplementation. I don't want to give my kid supplements without some way of knowing what/which/how much/why, but I can't seem to find anyone reputable to help figure it out - the doctors just say if your blood tests are "normal" by whatever seemingly arbitrary medical standards, you're fine. I don't know much about repatterning but interested to hear. If you want to start a new thread and then link here, maybe that would be more appropriate.