Depression and Jealousy -- in me!

iVillage Member
Registered: 04-07-2003
Depression and Jealousy -- in me!
12
Sat, 04-22-2006 - 9:00pm
In many ways I'm doing much better emotionally since getting dx for my kids. It's nice to KNOW what's wrong with the kids and to get some ideas of how to better work with them. It's also nice to be validated that I'm not just making excuses for my kids. However, I find that I still have many bad days where I'm jealous of other families and how "easy" their lives look and how many more things they can do. I'm feeling especially petty right now because my brother's family just learned that the baby they're expecting has Down's Syndrome, and they are really depressed about how this will impact their lives. They currently have four very smart, very capable children. Both my brother and his wife are very talented individuals. They lead just about the ideal life and lifestyle: jobs, finances, vacations, talents, hobbies, children, etc. They are also very nice and generous people who serve their community, church, etc. I completely don't want to diminish the impact this baby will have on their lives, and I totally understand that this kind of surprise brings a lot of emotional upheaval with it, but on the other hand, I feel like "how is your situation different than mine?" Why is it that just because your baby comes with an obvious disorder, it is "worse" than what I have lived every day for the past dozen years with no one saying "boo" about it (if anything, we've been judged for being poor parents)? And, since dh also has disorder, employment has sometimes been a bigger struggle, finances have been tighter, vacations have been limited, activities we could afford for kids (assuming the kids had the coordination to participate) have been limited, etc. We just got a family e-mail where SIL mentioned the resources available to her already through the military (brother is upper ranking military). I've had to struggle for a dozen years to get doctors to believe even one thing I told them about my kids, and even now we don't have any resources available to us. I feel bad that instead of feeling sad for my brother's family I feel like "good, it's about time you had a taste of my life!" It's so terribly petty. Truly I love my brother and his family and don't wish difficult things for them (or anyone), but I'm having a hard time being sympathetic instead of making this my own pity party. Of course I'd never say anything so rude to them and will be loving and supportive, but it's a struggle to not be bitter, too. Now that I got that off my chest (to an audience I hope will understand rather than be offended), I'll go be nice to my family now. Thanks for "listening."

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iVillage Member
Registered: 03-26-2003
Sun, 04-23-2006 - 12:05am

I understand what you are saying and here is a safe place to say it. None of us would wish special needs on anyone particularly a member of our family. However, sometimes it is very frustrating to be in a similar situation where you haven't had support when you watch someone else get the supports.

In our family my husbands brother has a son with classic autism. His differences were obvious early on and even though my kids were diagnosed first I always had to listen to bad parent comments and comments that the kids didn't look autistic to them. Over the years watch SIL get all the support the questions about autism like she was the authority. Even though my DH is an autism specialist and we have 2 with it.

I would never wish autism on any family member nor any other special needs. I adore my SIL and my nephew, but still the lack of support hurt. What also hurts is constant not knowing. One adult with HFA said once he was "to disabled to be normal and to normal to be disabled". I think that is where alot of our kids fall. They are disabled in many ways but there is no recognition of it and it is very hard to get supports for them.

One question I always ask myself is will my kids be able to be live independently and if not will they be able to get services to help them. It is that middle ground. Dawn Prince-Hughes (Asperger author) was homeless for a number of years because she had no idea how to even access help and if she tried I wonder if she would have gotten it. She now has a PhD. Jerry Newport couldn't even hold down a taxi driver job for years because of his autism. These things scare me.

It also frustrates me that my kids have to live with this inbetween. That have to live with not being able to think and function typically but having the expectations that they should. To constantly be misunderstood by others as rude for not making eye contact or having poor social skills, as weird for thier funny stims or saying the wrong thing or acting innappropriately.

Suddenly over the past couple years it has become more apparent that Mike is special needs and not just a brat. I also wrote a lengthy email to family and it has gotten some better since then. It is actually easier having a child who is obviously SN than just one who appears naughty. When I tell people he is autistic they typically believe me and that helps. I don't usually have to for Cait anymore. She blends well enough and heck, most middle schoolers are quirky and weird. But her school doesn't get her and I have to fight with them about it too.

So in short. I understand.

Renee

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iVillage Member
Registered: 03-26-2003
Sun, 04-23-2006 - 12:09am

Oh, BTW, my best friend is pregnant with her 6th child. Her 2nd is severe bipolar, learning disabled, PDD-NOS, etc. Of her other 4 children, 1 is ADHD, 1 is ADHD, higly gifted and LD and another was just diagnosed mood disorder along with her ADHD. She has been living with these same frustrations for years.

She just found out the new baby may be downs. She has confided in me that the thought of that is easier than worrying about another child with invisible disability.

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iVillage Member
Registered: 08-26-2005
Sun, 04-23-2006 - 1:32am
I think what you are feeling is completely natural. I know sometimes my DH's family thought I was nuts to think my DS had autism and don't even want to talk about my DS diagnosis to this day.Right after I got his diagnosis I went through a horrible stage where out of nowhere I would feel this incredible rage and jealousy because of what both my kids and I will have to go through. Thank God I foung this site because many days coming here saved my sanity! Just today my inlaws where over for DS birthday party and DS was so excited he couldn't stop jumping up and down and flapping his hands. I made the comment to my MIL that I hadn't seen him do that in so long but she just totally dismissed and said he was just excited about his party! It's very frustrating especially if you have a very bright kid who's vocabulary is excellent, people look at you like you are just looking for problems in your child. I guess Just hand in there and no what you are feeling is very normal and something we've all felt at one time or another!
Teresa
iVillage Member
Registered: 09-12-2004
Sun, 04-23-2006 - 11:36am

I am so with all of you on this. When Ian was 20 months and not talking, everyone said he'd talk whenever he felt the need. I'm so glad I didn't listen to them and got some help with speech therapy, which worked wonders. Since his issues are more apparent, we've been able to get a lot more help. With Duncan, *I* didn't even realize there was a problem because his development has been so typical compared with Ian's. I'm having a terrible time figuring out the best educational placement for him for next year.

Before we had the dxs, I sometimes did think it would be almost easier to have children with more obvious issues than simply being "high needs" as I thought of them. I was and still am very envious of families who can have a normal dinner, whose kids aren't so picky about what they eat, could go on trips and vacations without having their kids want to go home whenever they get overwhelmed. Last year we went to Iowa and rode a train -- not Amtrack, it was an excursion trip that only lasted about an hour. Anyway, Duncan refused to get on the train so I carried him and he screamed bloody murder for 20 minutes. The conductor made us go to a car that didn't have anyone on it, "We can't have that here" which I totally understood and was grateful to go on an unoccupied car. I was so humiliated by the stares of dissaproval and others' embarrassment for me. Eventually Duncan calmed down and was able to enjoy the ride very much. After he had calmed down there was a woman from a church group who came over and I don't remember what she said, but it was very supportive and I was beyond grateful. I'm glad I made Duncan get on the ride, but I wouldn't have had we not already paid for the tickets and Ian wasn't already on the train waiting for us. I can't tell you how many things we've had to avoid doing. Swimming pool. Movies. Restaurants. Shopping. Stuff other families take for granted. It's getting better and we are able to do a lot more, but not without great effort and work to make it happen. And other parents just think we're weird, that we have weird kids and that we are bad parents. Unlike other jobs, you can't quit this one if it's too hard or your subordinates are difficult to manage or the atmosphere is hostile. I live in fear that we are the "weird family" on the block. Nothing obviously wrong, just weird and somewhat ostracized.

The in between is very hard. On the one hand I feel sure our kids will grow up to be employable and have satisfying lives (until they have kids like themselves, at which time they will get to relive all of this with their kids). On the other hand, I wish we were all normal, completely normal. Going to soccer games and pizza afterwords. Getting to have babysitters come over on Friday nights so hubby and I could go on dates. Going to church on Sundays.

I also know what you mean about people acting like you are just looking for a problem with your kids, like you have Munchausen's (sp?) or that you are just inept at parenting and looking for an excuse.

I know where you are coming from on the jealousy, and you are definitely not alone. I certainly will not think less of you for expressing this here, because I'm sure we all live it every single day. It's good to have a support system here, if not in real life, and what a blessing this board is.

Kelly

iVillage Member
Registered: 02-24-2004
Sun, 04-23-2006 - 2:04pm

I think it's completely normal to feel how you are feeling. I find myself looking at other families. Happy, normal, able to go places and do things...that we just can't do. Anything we do, has to have a plan. We have to think things out, make sure Nathan's needs will be met, will he be ok, can we do this, should we skip that, is he having a hard day, etc, etc.....

Everyday is different...hard days, easy days. It is hard at times to NOT look at other families.

michelle

iVillage Member
Registered: 02-20-2001
Sun, 04-23-2006 - 11:14pm
Ditto whatever one else has said.

 


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iVillage Member
Registered: 03-26-2003
Sun, 04-23-2006 - 11:26pm

I agree with all of the posts......we all feel this way at times.

((HUGS)) and hang in there,
Christie

iVillage Member
Registered: 03-26-2003
Sun, 04-23-2006 - 11:33pm

Kelly,

The more I read your posts, the more it reminds me of our family. Cait had obvious delays so was in special preschool early on. Mike's weren't as obvious but affected us loads. 20 minutes of screaming on a train. I have SOOOOOO been there. Wanted to say big kudos to your for getting him a diagnosis and services this early. PDD was mentioned early for Mike but because he didn't have significant delays (like 6 month language delay with some gaps and concerns) we blew it off and he was misdiagnosed/misunderstood for years.

I also wanted to say I so totally understand the jealousy of typical families. Today I was driving home and there were 3 boys standing in thier front yard chatting with each other and one of the dads just so easily with cars driving by. One had a basketball, one had a skateboard and they just stood easily and naturally. No fidgetting, no stimming, the dad wasn't on constant high alert for the street for the kid to just wander into it. And I was HUGELY jealous. It is the stupid things.

Another time my friend told me about her son being in the baseball playoff and all stars. UGH. Not that they have to be sports stars, but darn it would be great if there was just one typical kid thing they were good at and could be proud of. The team winning the big game or building the best car for the soap box derby at scouts or heck being in scouts.

Finally Mike is doing karate and doing pretty well but of course I had to explain autism to the coach and there have been some close calls. I am wondering how long we will be able to make this one last before we are either kicked out again or he quits.

Yeah, anything normal would be nice. That is why autism is a PERVASIVE developmental disorder. It pervasively affects ALL darn aspects of life. Mikes class is all learning handicapped kids. 1 other autistic kid but the rest are in sports, or ride thier bikes to school, or hang at thier friends houses.

Well my kids are honest, hardworking and sweet and I love them to death. At least they dno't have to struggle with spelling.

Renee

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iVillage Member
Registered: 02-20-2001
Sun, 04-23-2006 - 11:51pm

Renee,


Don't you think out kids should have a better long term outlook than those who came before them?

 


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iVillage Member
Registered: 03-26-2003
Mon, 04-24-2006 - 12:10am

I sure as heck hope so but I just don't know. Particularly now in middle school. In early intervention years there is so much more work by the school and hopes for improvement. In upper grades it feels sometimes like they have just quit. They don't expect recovery anymore, they don't expect huge gains like they did before.

I was just talking to a wonderful PreK teacher the other day. She said she taught upper grades severe handicap for years and moved to preschool because preschool and elementary is where you see the real gains. By the time the child heads to high school the gains are slower. The hope for recovery is gone and you do your best. She loved the kids in high school. This is definitely one of the best teachers I have ever met. I know she fought for her kids even then but you can see what this mentality does to lesser teachers.

It is definitely then up to the parents to keep the fight going. To begin to plan for life beyond high school now and how to help thier child to be independent.

I know Cait made lots of gains in preschool she may not have done without it. However, I am not sure that the educational system or social system is yet set up to support a person like Cait or Mike into their adult years. That is scary but it is the truth unfortunately. It is up to us to plan that for them and figure how to get them there.

I have a friend with an ASD husband and the problems he has had with work are really amazing. But he is stuck in that great in between. Disabled enough that it effects his ability to provide for his family, but not disabled enough that he would qualify to recieve many supports he could benefit from.

I guess time will tell for us.

Ya know what else kills me about this inbetween is how it affects the kids themselves. At this level they know they are different and they are often frustrated by thier own challenges. That has got to be so hard for them.

Renee

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