Queen of Denial?
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| Fri, 01-25-2008 - 8:39am |
Am I the only parent to have done this?
I've not ever been in denial that something was very wrong with my daughter. Since birth, she has had constant health and behavioral issues and it's taken me three years to get close to anyone seeing what I see. She doesn't have a diagnosis right now, but we have strongly suspected autism since she was nine months old. So, no denial about what could be going on with our daughter.
However, I've had this thing where I think "if she can just get enough therapy, by the time she's three, she'll have overcome this" or "if she gets enough therapy, by the time she's five, she'll have outgrown this". This is where my denial seems to be kicking in. We have a good day or week and I think "I've really over-reacted, she's fine, just a rough first few years." (Then the bad days hit me like a ton of bricks). I guess I'm having a hard time with the idea that she'll always struggle. To know she might not grow up with friends or secure employment or a solid future, free of these social, emotional and communication challenges is heartbreaking. I keep thinking "she just needs a little help right now and she'll be fine before she hits school age."
We've always said we just want to see her healthy and happy. And we do mean that. I don't care about quirks or whatever. I just want to know she'll make friends in life and feel secure about who she is and the world she lives in, enough to function well and be happy.
These "cure" talks make sense to a degree because I don't think any parent wants to see their child in pain or suffering in any way. There are so many days that seem like she's fighting just to stand up and stay awake and "together". I'd give anything to take away whatever does this to her so she just wakes up and gets to just enjoy life without fighting so hard to be in it.
I don't want her personality to be any different. I love her quirks and who she is - she is hilarious and thinks outside of the box and causes us to see life in such a different way. But I hate how hard everything is for her and how it seems to affect her so severely in an emotional, social and communicative way.
I guess this was just a rant. I didn't mean for it to be. I just wondered if I was the only parent that was not so much in denial about what's affecting my child, but in denial about how long this might affect her. And how to accept the grief that comes with the acceptance - not the grief that says I'll never have a "normal" child, but the grief that says how sad I am for my child and how unhappy she seems so much of the day; how badly she wants friends and yet runs away from them crying as soon as they approach her or how she hides behind a chair the entire playdate. To hear the playmate be frustrated with her because my daughter won't stop echoing the girl, doesn't know how to play anything imaginative with her and says long sentences that are just jargon, is hard.
Without therapy (which is a possibility if the school denies eligibility and we can't afford private pay), will this just get worse as time goes on or just be what it is and she'll always struggle at this level, no better, no worse?
Thanks for letting me talk out loud. :)
Laura
Isabella 1-4-05
Bryan 12-9-06

Hi Laura,
{{{{{{{{{{{{Hugs}}}}}}}}}}}to you hon...I am so right there with you.
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Christine
Every parent second guesses.
Jeisbren - I just wanted to send you hugs, and also give you my perspective - your daughter and the skills she has at 3 are not the skills she will have at 5, and 7 etc. I was (and am I guess!) in a similar situation. My ds now has made sooo much improvement. When he was 3, I honestly did not think he would be in a typical grade school. He is. He has and needs minimal support at this time. Socially, I would love a little support at school, but am still fighting for that. My son had 5 words at 3 and had just started putting 2 words (red car) together at 3.5. By 5 he was all caught up in speech. Things are not perfect, but they are so much better than I imagined. We initially had a diagnosis of Communication disorder and SID (watching for PDD-NOS) and now have an ADHD with language disorder - although he tests fine for language at this point. I have always thought PDD - but no Doctor - and we have been to many agrees.
As long as she is making progress, you are doing fine. We did a lot of private therapy (speech, OT and now social skills). We also found friends that were also quirky so that they were more accepting and so were their parents. These friends we found thru the early intervention program the school district provided, and through the private therapy he attended - often he was matched up with another child. It is hard not to measure her to her peers, but try not to. She has made tremendous progress, and will continue.
Try not to get hung up on a diagnosis as they change and are not a measure of her full potential. Plenty of people on the spectrum are successful adults. Today we have so many more interventions. A diagnosis is very helpful to get the right services (especially in school) but is subjective, and now always easy to get.
Neighbor kids are great friends, but if you sense it is frustrating for the neighbor, find someone else for your daughter to practice with. I videotaped my sons play dates so his therapist could see where he shut down, or went off on his own (often at 3) or was way too controlling! The therapist had great feedback, and really helped a lot.
Keep up the great work. You are not alone, but it can be lonely, so find a friend who gets it. I call it "the club" the quirky kid club. It is challenging to be in this club- very expensive too (therapy etc)!.
Hi and it was good to see you at chat last night.
My ds is 10. When he was 3, we had great and bad days. We still have some hard days, but life is very different at 10 than it was at 3, and every child is so different and unique and special. Developmental delays are NOT developmental full stops, our kids do make progress, hopefully constantly throughout their lives, and the potential is always there to make further and further strides. There is never a time to just give up, or stop hoping. This dx does not come with any finite future attached to it, some adults are fully within society and independent, with friends and married and even children of their own, some hold down jobs of all sorts, others are in assisted living situations --- but sky's the limit. And even the parents of an "NT" child might have that child dependent on them as an adult, fall into mental illness, become physically debilitated, there simply are no guarantees in this life.
Our ds does have wonderful friends, some are like him, others NT. He has worked hard in his therapies to learn about the world and himself and he is continuing to. He does social skills groups, rides horses (learning to jump now!), does Tae Kwondo. Ds is an avid learner and excels at school work, although we are homeschooling due to lack of appropriate school programs where we live (NYC) and that works great for him! (We are just starting to look at middle school programs, sigh...)
Anyways, you are hardly the only mom who goes through these fears and self-doubts, we have all done it. It is a great thing to unload here, we will never pooh-pooh you, we DO understand. But fear is just that, fear, and the reality of raising an unusual child is that you just have to always think outside the box. This is uncharted water, unlike those of most parents around you, and therefore keep your eyes on the prize, the growth and health of YOUR child, and remember, it's not WHEN they get there that counts. Evaluations have always been helpful to us, finding out specific strengths and weaknesses helps us decide where to focus our approaches with him.
But loving a child is still and always the most rewarding thing ever, and raising your unusual child will be wonderful for you, too. 3 is a hard age for everyone... don't despair. I know I am such a stronger person for having our challenges --- not that I would wish for it, mind you. But our ds is a great kid, tough, a fighter, intelligent and funny. I hate that he has more struggles, but it doesn't diminish him, in fact quite the opposite. I am in awe of him.
yours,
Sara
Thanks everyone! I really appreciate the feedback, reassurance and encouragement. I think I'm having trouble with this Early Intervention to School services transition and having a hard time keeping much perspective. I think it's feeling worse because after nine months of three hours of therapy a week, my dd has gone four weeks without therapy since graduating from EI and awaiting a decision from the school and it feels like we're back at square one in so many ways.
I really appreciate all of you keeping me in the right frame of mind. I just need to learn how to balance the emotion and the advocacy pieces of being a mom to a child with some disabilities and how not to let one over-run the other.
Anyway...thank you!
Laura
Isabella 1-4-05
Bryan 12-9-06
Laura, I just wanted to send (((((((((((((((((((((((HUGS)))))))))))))))))))))) and let you know you are not alone in your thinking.