Sad Today!

iVillage Member
Registered: 08-26-2005
Sad Today!
9
Tue, 10-11-2005 - 2:00pm
Hi Everyone,
I'm sure you all have days like this but I'm tired of the rollar coaster of emotions that comes with a diagnosis of autism. My emotions go between anger and sadness with very little in between since Jake was diagnosed. I know I should be grateful he's so high functioning but I'm having such a hard time excepting this. I feel cheated out of truely enjoying his first years because all I did since he was 11months old is worry about autism and now I'm reliving it with Ella and worrying about every little thing with her.It just seems to have taken over our lives and I can hardly remember a time or day when autism wasn't at the forefront of my mind. I know this will probably change as the years go by but not knowing what the future holds is the thing that keeps me up at night while my DH I might add, is snoring his brains out next to me.That's another thing, why is it mothers seems to do all the therapy sessions, go to all the autism meetings, read all the books,etc. Sorry!I'm just mad at the world today and feeling sorry for myself but I'm sure I will feel better about everything tommorrow.
Teresa
iVillage Member
Registered: 09-16-2005
In reply to: baboig
Tue, 10-11-2005 - 2:19pm

((((hugs)))))

I could have definetly written that post myself, and we have no dx. I feel like since my DD was 10 monmths old - all I have done is worry and worry and sit awake at night - it's awful. I know I 've missed so much enjoyment over this, I feel like I missed her whole 2nd year, even though I've been right here with her. I almost feel like it could be worse if I don't get a dx on friday - like I've been worrying for over a year for nothing. I can so realate. I analyze her every move, all day long, 'is this normal', 'is that normal', etc.

I don't have any great words of comfort - just that I hear ya...........

iVillage Member
Registered: 05-30-2005
In reply to: baboig
Tue, 10-11-2005 - 3:50pm

Ooooh, yeah. I hear you and I am so sorry your having one of "those" days. I know what you mean about feeling cheated and then feeling guilty for feeling cheated. So many moms keep saying that they've gotten to the point where they see their child's autism as a gift in a way and I'm looking forward to adopting that very same attitude. But it's a way off for me I think. It's just so overwhelming -- the diets, the therapies, the follow-through, the evaluations -- and that's in addition to everything else that needs to be done. And, even though my DH is a wonderful husband and dad (he is so great with Calvin) it's still me who is in charge of learning about autism. What to do, what to eat, what not to -- and telling him. And his parents. And my parents. It's like I'm a clearinghouse of information,yet I don't really know what I'm doing either. It's truly exhausting.
And my moods are directly linked to Calvin's behavior, too. On good days I'm on top of the world and so optimistic. On autistic days, I'm crying.
So, yeah, I know what you mean. And I'm so sorry you are having a bad day. Just know that there are good days ahead and you will deserve every single one of them.

All the best,

Kellie

iVillage Member
Registered: 06-25-2003
In reply to: baboig
Tue, 10-11-2005 - 4:52pm

(((((((Teresa))))))))

I have had many days like that. I still have them, and the 1600th one is no better than the first one. (Actually, have my kids even been alive 1600 days? ...I digress).

However, once you get through the initial freaking-out-running-to-stay-still-why-me-why-now? phase, the bad days decrease in frequency by a substantial amount.

So for today, I recommend you have yourself a nice hot calgon bath tonight, get to bed a little earlier, "col le sámh", and know that today is finished, and tomorrow will be better.

-Paula

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 02-24-2004
In reply to: baboig
Tue, 10-11-2005 - 4:54pm

Teresa,

Nathan was dx'd April 2004. And I still feel like it just happened. My dh doesn't help much with anything that has to do with autism. Everything is left up to me. It took him a long time to deal with it. He was never in denial, I think he just didn't know what to do, or even how to interact with Nathan. He's slowly learning some things, but it's me who does the reading and then passes on the info to him. He watches how I handle Nathan and this has helped him, as well.

I think about Nathan constantly, and I worry all the time. I don't think that will ever go away. That's just my life now. Lots of ups and downs, good days and bad days. No one seems to understand why I worry so much. But then they don't "live" with autism. They don't see all the things I see, and deal with everything that I do. I know that there are many challenges in the future. It's my job, as his mom.....to get him thru everything. I guess that's what keeps me going. I'm his whole world right now. He needs me.

Anyway, I just wanted to let you know that I know how you feel. It's hard. I'm still learning to cope with the sadness. Hugs.

Michelle

iVillage Member
Registered: 04-06-2005
In reply to: baboig
Tue, 10-11-2005 - 9:25pm

I know it's hard, but just keep your eyes above the horizon and believe that things will be okay. You will work hard, you will go forward with courage and conviction (on most days) and things will get better.

The other thing is that your hubby will come around one day and when it happens, it may shock you. My DH has always been my wet blanket, calming me down, telling me not to worry so much. I remember when he found this board on the computer one night, and he must have just started reading all the different posts and descriptions of children so similar to Kieran. When he came to bed later that night, I could tell he was upset. So when I asked him what was wrong and he replied, "I'm worried about Kiki". This was particularly interesting for me to hear, because I was in an optimistic phase (if you will). Kieran was making some great progess, so I wasn't nearly so worried as I had been in the past. And there I was, being the wet blanket, calming his fears...complete role reversal...it was weird. Positive, but weird.

It's a mixture of good days and bad days...just a lot more extreme at times than most folks go through, I think.

Gemma

iVillage Member
Registered: 09-11-2004
In reply to: baboig
Wed, 10-12-2005 - 5:07am

I also could have written this post... although it would have been much longer if I had. :)

I have never had the experience of having a "typical child" so I don't know what that is like. Although my first daughter is very typical despite being delayed in speech (she has Down syndrome but is otherwise on track for her age).... I still feel a little cheated because of all the medical issues that both of my girls have. They both have epilepsy, asthma, allergies, reflux and aspiration, poor immune systems, ect.

My younger daughter is the one being evaluated for autism and I also feel very cheated because of her issues. She was premature, deprived of oxygen, started having seizures shortly after birth, and her whole life she has either been seizing or else on meds for it. The speculation is that the seizures actually caused her issues, whether it is autism or something else. We have a strong family history of Autism AND seizures however and there appears to be a direct correlation where people have both. My brother and I both have Asperger's syndrome (and both had seizures) which my family kept from me until I started researching it for my daughter. Once I diagnosed myself they admitted I had been diagnosed when I was younger but that they refused to believe it. I feel quite cheated because I wasn't given the chance to get help then, and I have struggled because of it. I don't want my daughter to have the same experience.

And, honestly... right now my biggest fear is that my in laws are going to lose it when they find out. They didn't take my older daughter's Down syndrome very well and I think they just barely started to accept that. (She will be 3 in February.) They have been very hesitant to believe that there could be anything wrong with my younger daughter (seizures, asthma, ect) and then do favor her I think. It makes me angry.. but I prefer that to them not being around at all.

I wonder, what is it like to have a typical child??? What is typical? I don't even think I know anymore. Seizures, meds, bandaging up bite wounds, breathing treatments, monitors, hospitals, doctors, therapies, avoiding trains or sirens, trying to keep an oversensitive child and an undersensitive child happy at the same time... that is all typical to me now. I don't think I could ever handle a typical child.

Okay, I'm done now before I get all emotional, again. Hard not to when your child is hitting, biting, and yelling at you and her sibling all day long or else throwing herself into the wall, floor, furniture, ect..... over and over and over again. (I absolutely feel horrible for my older daughter, and I have been keeping them seperated to prevent her getting hurt. So now they can't even play together.)

I certainly hope that we find something out when she is evaluated in December... and I hope my in laws can handle whatever it is.

And, I do hope it does get better. I don't even think about my older daughter having Down syndrome anymore. However, it doesn't really affect her life either. Her speech delay can be blamed on genetics (she is talking more than I was at her age, and everything else she has done at the same time or earlier than I did.) I do look at the Down syndrome as a gift now.. because of how it changed me, the people I have met, ect. I am to the point where I wouldn't change that even if I could.

Autism is different... I know the struggles that I went through growing up with AS and no diagnosis... so I fear the struggles that she will have. I hope that my going through it before her will somehow make me more equipped to help her. I also hope that at some point I feel the same way about this as I do about Down syndrome.. that it just doesn't affect her life enough for me to get upset about it and that it is a gift. That would be nice.

I guess we will find out, now won't we??

www.aliandpeanut.com

www.upwithdowns.org


Our Webpage: www.aliandpeanut.com

Our local Down syndrome group:

iVillage Member
Registered: 04-11-2003
In reply to: baboig
Wed, 10-12-2005 - 7:43am

((((hugs))))

Sending you a good bottle of wine.

Samantha

Samantha
iVillage Member
Registered: 03-26-2003
In reply to: baboig
Wed, 10-12-2005 - 5:34pm

Your post spoke volumes to me today.

First, let me say I am sorry you never knew. A friend of mine and I have a motto (actually there are a few of us) "To not speak of autism is to make it unspeakable". It was this friend who initially convinced me to tell my children about thier ASD based on this quote. I didn't want anything of my kids to be unspeakable or hidden. I wanted them to accept themselves for who they are and celebrate thier strengths, differences and work with thier weaknesses. Not talking about autism will not make it go away.

It is hard to know what it is like to have a typical child. Mine is my 3rd and she still had her own little things. Some sensory issues and reading issues. She also has some encorporesus and isn't terribly coordinated, but she isn't autistic. My other 3 are to varying degrees.

I do have to say it does get better. And I also have to say that you HAVE to take care of yourself. It is something I am learning a bit late in the game but I am trying now.

Anyway, would love it if you could email me. rbaer4@sbcglobal.net

Renee

Photobucket
iVillage Member
Registered: 06-25-2003
In reply to: baboig
Wed, 10-12-2005 - 6:29pm

Well I was flabergasted to read your post. When did you find out about your own AS? It must have been a shock.

I am not exactly sure what an NT child *is*. Bth my kids have at least one DX, probably more. and I'm pretty sure I have a DX waiting to be ferretted out, but I am holding out on that one, for fear of it impacting my chances of geting a job (bad, right?).

Is there anyway you can push to have the eval fasttracked, on the grounds that she is hurting your other DD (I know this is a tricky line, because they will holler MEDS!!!), but it seems to me that almost another two months of this is a lot to ask of you. You need help now. IS an OT eval included as prat of the suite? I think your younger DD should be evaluated for sesnory issues. Throwing herself about sounds like proprioceptive hyposensitivity) and OT could help you guys out. (OK I know "OT" is my answer to everything, but what can I tell you? I'm a believer!)

(((((((((Hugs))))))))),

I wish there were more I could say or do to make things better.

-Paula

Neither of mine are

-Paula

visit my blog at www.onesickmother.com