How do you do this?

iVillage Member
Registered: 03-30-2003
How do you do this?
10
Tue, 09-20-2005 - 8:28am
Even though my DS is not dx'd yet, I find myself having a hard time taking care of him. He will be 1 soon and doesn't do anything that DD did. He has so many markers. He has been to a dev. ped 4 times and we go back at the end of October, but I know they will still be hesistant to dX him. SO, how do you do this? How do you get through the day? I am grateful to be at work and not have to be with DS. I used to dream about winning the lottery and what I would do with the money. But now I think about how I could take DD and leave. Almost like I am planning it. I know that is SO terrible, but I don't think I have this kind of fight in me.
How do you guys do it and not want to leave it all behind?
Sonya
iVillage Member
Registered: 03-26-2003
Tue, 09-20-2005 - 9:51am

You just get up each day and try again.

Some days are great. Sometimes they do a new thing you never thought you would see and you cry cause you can't help it. Some days there are just less tantrums and you have a good day. And that makes it worth while. Somedays you get things in line, therapy goes great and you feel pretty good.

Some days suck. You do a horrible job as a mom, or at least you think so. Your patience is shorter, but you can always get up and try again tomorrow.

Your son is still young and you are still going through diagnosis so it is hard. You are early in the "grieving" process. However, you will eventually get to a place where is he son first and autism after that. Where his own unique gifts will shine through and you won't see everything as part of his diagnosis or what you worry will be his diagnosis.

I was fortunate, before my kids were born I had met loads of autistics and other people with special needs, but mostly autistics. I worked in the field. Many of them were older teens or adults. I instantly feel in love with the population. They were some of the neatest people I have ever met in so many ways. These were autistics in a residential school so most were pretty severely impacted. But they were individuals and really really neat people. They were not "autism" but Jim, Janine, Anna, Joshua, Todd, and ...you get the picture.

That was the hardest part for me was getting past "autism" as the main thing. It is a major part but it isn't all of them.

Also, it helps to find friends who are also in a similar place, to get support from others, take care of yourself, and take advantage of the supports available in your state for parents of kids with special needs.

Has your son been to early intervention for a evaluation yet? Even if not a full autism diagnosis, if his speech is behind or anything they can start helping him now.

Renee

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iVillage Member
Registered: 07-24-2003
Tue, 09-20-2005 - 11:06am
Have you called your school district about early intervention. You don't need a diagnosis to get services, and they can help both of you. I'm still waiting on a child find screening, but I've met with a friend who is an OT for the public schools a couple times and she's been able to show and tell me things that have really helped us.
iVillage Member
Registered: 06-25-2003
Tue, 09-20-2005 - 12:39pm

Sonya,

Most of us are years into this process and have gone through it and come out the other side.

You are just starting out in the process of grieving. -It is like a death. The 'death' of the child you thought you had, or thought you *ought* to have had. However, there is a living child here now, who needs you, and you do it for HIM. Because you are the only person who can get him through this and if he hasn't got you on his side, he is alone. It is hard to grieve and still mother a child, but just take it one day at a time, as Renee said, forgive yourself your failures and try again tomorrow.

Here are the five stages of grief.

DENIAL
ANGER
BARGAINING
DEPRESSION
ACCEPTANCE

Now let me tell you some tricks which really helped me:

Stop comparing him to other kids or to the books. Actually, put the darn books away. Only compare him to himself -days, weeks, months ago. Then you will see his progress and growth, and take more joy out of each.

Join a support group. An internet one like this is great -open 24/7 and you can vent to your heart's content and never worry about running into any of us in the Piggly Wiggly.
A live support group is better, -especially at first. Contact local community centers, hospitals or schools (preferably special ed) to find one in your area. People in your town are going through this right now. Find them and you can help each other.

Get help for him. Early intervention, birth-3; -whatever is available locally Your Ped should be able to guide you. If not, change pediatricians.

Educate yourself on HIS issues. not "autism", per se, but have full evaluations on occupational therapy, expessive/receptive language, physical therapy, psychological, etc etc (all should be available at no cost through EI or 0-3). Then get a base line of his strengths and weakness and learn how to maximise strengths and address weaknesses.

Do stuff for you. Time with friends, a manicure, WHATEVER -just something to take you out of this, just for a little while to make you feel "normal".

I hope some of this helps a little. (((hugs))) I know this is a very tough stage. There is hope and light on the other side.

-Paula

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 04-11-2003
Tue, 09-20-2005 - 5:58pm

Well, quitting is not an option. So when things are hard, like today, I call my sister and cry and I come here and ask for advice. I talk to my husband and have a drink, lol. I pray and know tommorow will be a better day. Just take it one day at a time and seek support when you need it.

Samantha

Samantha
iVillage Member
Registered: 01-22-2005
Tue, 09-20-2005 - 7:21pm

One day at a time.

Some days are better than others, some are worse. But there are those days with an NT child that are better than others.

My son is my son, he is not "Autism" or "Asperger's." He is CJ.

When we have difficult days, sometimes days on end, I hand him over to DH and take a walk.

But honestly, since we got the dx in January, we've begun to deal with him differently. We have calmed down and so has he.

Every day is a new day. They wont all be wonderful, but they all end and begin again.

It is alright to be upset but you can't let it rule your life.

Each milestone is huge. It takes my son so much more to acheive each one. We celebrate alot.

I'm not much help, I'm sorry. But know that you aren't alone.

Crystal

Avatar for googolplex
iVillage Member
Registered: 03-31-2003
Tue, 09-20-2005 - 10:59pm

Sonya,

It sounds like you are so worried about your ds that you're unable to enjoy him for who he is. Whether he turns out to have a "diagnosis" or not, it sounds like *you* could really use some help in getting through this.

I'm sure you've said it before, but could you tell us again what specific things he is doing or not doing that leads you to believe something is wrong? Could you tell us what it is that makes it hard to take care of him? You say "I don't think I have this kind of fight in me?" and I'm curious as to what specifically you mean. What is a typical day or situation that leaves you feeling this way? What is a typical day that leaves you feeling like everything is okay? Also, if you are at work, do your kids go to daycare or stay with DH or a nanny? What does ds's daytime caregiver have to say? I know that's a lot of questions, but I just think we could help you more if we had more info.

You say he has been to a developmental ped four times, and they are hesitant to dx him. Could it be that his development is still in the range of normal? One year is pretty young, and kids develop at their own pace. He's not going to do all the same things his sister did at the same time, because he's a different person.

There is a website called www.floortime.org that I've looked at a few times. If you go to the "web radio" link and read the transcripts for some of the conversations they've had, you might find some useful stuff. Other people on this board can tell you more; we aren't officially doing "floortime", but from what I understand it is basically a cross between child-directed play and therapy. I get the impression that you and your ds might find it helpful.

Please, I know it's easier said than done when you are having a rough time, but try to enjoy your little boy as he is, at his level, without worrying about what he's *not* doing. He needs your love and smiles.

Keep us posted!

Evelyn

iVillage Member
Registered: 03-30-2003
Wed, 09-21-2005 - 6:27pm
Evelyn, Hi! Jacob was a month early. He has never really made eye contact. He does not have joint referencing. WHen I give him a toy he will take it but never look at me. He does a little bit of babbling, but not much. He also does not imitate. He will not imitate sounds, or facial expressions. HE does not play baby games. Jacob is very interested in buttons (like on the phone or remote). He is distant and his eyes always seemed glazed over. He does not follow any one step commands (hand mommy the cup). But he does reach for me and he will find me if he bumps into something and cries. He does not point on any consistent basis. Occasionally he has pointed to an airplane and that's it. I have a masters in special ed which makes it even harder for me. In July, jacob was age appropriate in all areas of development according to the dr. I go back to see the dev. ped in Oct. I just recently filled out a social-emotional questionaire. I think he will score low on. He does not seem to notice strangers and when in new settings he shuts down. The sitter thinks he is fine, but she isn't looking for all the markers that I see. The reason I feel this way is because he isn't doing what he should be doing developmentally. I am tired of my mom and DH saying, "oh he was a month early, or He's just shy." I have a hard time being alone with him because he basically doesnt' interact with me. HE will crawl to me and pull up, but that's it. He does not respond to his name or much language. The whole "fight" thing is, I am already making up excuses to people as to why he doesn't smile at them or respond to their actions. I do not want to or think I can spend the rest ofmy life taking care of someone who could quite possibly be non verbal or spending his days spinning the wheels on his cars. I am afraid that his demands could become so many that I would have to quit work. I know I sound like such a baby, but this is how I feel. And I also wonder how fair it is to my DD. SHe would become the lost child if DS has an issue. It seems to me children with PDD spend quite a bit of time in different types of therapy. I just feel sad and the only joy I feel is going to work or being with DD. I'm not even much interested in DH lately.
UGH!!!
Sonya
iVillage Member
Registered: 03-31-2003
Wed, 09-21-2005 - 7:24pm

I think I was in some way lucky that my son (ASD) was born first, because I had nothing to compare his development to. Now that I have my DD, I am really getting to enjoy what a normally developing child is like.

I think every one has done a great job of pinpointing where you are at- the greiving process. It is hard, but as you son starts to develop more, you will find little joys in his progress. The first time my son told me he wanted a drink was so amazing- even though at the same time it was sad that we had to fight so hard to get him to speak at all.

You do have the strength inside you to fight this battle. None of us here are super heroes or have more strength than the average person- we just look at the day and know we have no choice by to get it done. It does become easier, esp. as you start to make progress.

Also, as a PP said- do not wait for a diagnosis- call your districts Early Intervension ASAP so they can start to get him and you help.

And do not feel bad if you need to see a therapist on your own to work through your feels- this is quite a blow for any parent to have to process on their own.

Don't be hard on yourself for bad thoughts you may have. As much as I tried to be positive I have had thoughts like "If only I never had a child..." or "Would this have happened if I married someone else? Were we just not compatable genetically to have a normal child?"

I am sorry every time I see a parent going through this whole process. It is heart wrenching. Please come here to vent anytime you need to- it helps to get it off your chest sometimes.

iVillage Member
Registered: 06-25-2003
Wed, 09-21-2005 - 11:33pm

Someone mentioned counseling ad I realized that in my original reply to you, I forgot to mention that I had to get emergency counseling when I first came out of my denial regarding DS's special needs (the company I worked for had a special plan). I had serious issues with the concept (had an MR brother -issues up the wazoo) and became suicidally depressed.

Speaking to a therapist -even just for a few sessions helped me a lot.

-Paula

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 03-27-2003
Thu, 09-22-2005 - 4:58pm

Sonya, (((hugs)))!!!


My short answer: