It's Really Kind of Funny....

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Registered: 03-25-2003
It's Really Kind of Funny....
7
Sat, 03-25-2006 - 11:07pm

...that after I posted my Devastated/Distraught message I posted one stating I was "in a better place".

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Registered: 05-11-2005
Mon, 04-24-2006 - 2:00pm

"How long did it take you to come to terms with your DC's diagnosis?"


June08siggy

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Registered: 03-26-2003
Sun, 03-26-2006 - 10:19pm

Hi there Theresa,

When does your heart stop hurting? Well, I have been at this a while and it still comes and goes in waves but like it does for any mom only more intense. Mom's hate to see thier babies hurting and struggling and we get a bit more of that than the usual.

However, your heart will also be happier at times than you can ever imagine. Autism has definitely made me a better person. I am stronger and yet I cry easier. I burst with pride every time something good happens and I am crushed when they struggle. And mostly every day I just try to help them become self sufficient happy adults. Still have a bit of a road to that as they are 10 and nearly 12.

There are times when things happen that still break my heart but the times when they do something I never thought possible just counters that in a huge way. I am a blubbering idiot over things like first communion, first dances, student of the month awards, etc.

I think like any parent, there are ups and downs but instead of mild ups and downs like a car ride in the country, ours are more like some wild rollercoaster ride. Welcome aboard. No one wants to be here but we are a pretty neat group and you are in for a wild ride.

Renee

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Registered: 02-20-2001
Sun, 03-26-2006 - 7:13pm

It will be a year next month that we got our diagnosis.

 


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Avatar for teerose731
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Registered: 03-25-2003
Sun, 03-26-2006 - 7:02pm

Your words

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Registered: 02-24-2004
Sun, 03-26-2006 - 6:41pm

"Does your heart ever stop hurting?"

Well, that's a hard question to answer. Nathan was dx'd just 2yrs ago. I think it comes in waves. Somedays are easier than others...somedays are harder. As time goes by, he changes...his quirks change, his needs change. We've been thru preschool, kindy, and are now in 1st grade. Each year poses a challenge. New things are introduced. Once he gains a skill, there are still other skills to conquer. I also have an NT 9yr old. So I know that the pace Nathan is going....is slower than his brother. He's learning all the same things, just at a slower pace. I'm determined that he learn the same things that we taught his brother. But only time will tell if we're able to do that.

One thing I have learned.....is to just keep doing it. He will learn it. Constant practice, constant repetition. Now that he's 7 and doing better with speech, my new thing is to tell him, "you just need some more practice". It's nice to have a phrase that he understands. I can talk to him about how hard it was to learn to write, and to read. How hard he thought it was going to be.....and NOW...he's reading and writing. He's still not academically where his classmates are....but he's gaining on them! This always brings a smile to his face. And now he knows that he CAN do it...it just takes practice.

There are still times that my heart hurts, but there are also times that I feel so proud of him....where my heart just fills up with so much joy and happiness. He's taught me to be patient, and to appreciate the small things in life. And I think our family has become closer because of him. I think he has taught all of us how important we are to each other. So...even though this road has been challenging and difficult at times.....I know all I have to do is look at him, and then my heart doesn't hurt so much anymore.

michelle

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Registered: 03-25-2003
Sun, 03-26-2006 - 12:50pm

Thank you so much Sara - your words are very soothing. I know we'll be alright.

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Registered: 10-03-2004
Sun, 03-26-2006 - 8:50am

Dear Theresa,

And I am answering you down here as well.. (((((((BIG HUGS)))))))) You most certainly have a lot, too much, on your plate right now. And crying would seem to me to be an appropriate release of your feelings. You are always welcome to unload here on these boards, we really really understand and will help if we can.

When there is anything going on with your children that needs to be addressed, you address it, right? No questions asked. If they have a fever, you treat it. If they need a wheelchair, you buy it and get physical therapy. If there are challenges in learning language and interacting with people, you get specialists to teach them, learn what you can do at home, modify your own language so he can learn, etc.

Yes, the fear and panic and hurt you are experiencing is VERY NORMAL!!! but the reality of living with a child who has neurological difficulties becomes just yet another version of parenting, and you have 3 the same age... Challenging!!! You are a special lady and you will learn what is necessary for raising your wonderful, unusual child.

As I said in other post, the actual dx is fluid, it's the needs of your child that you WANT as much information about as you can get, so you can start to make informed decisions about how to help him. You are just starting out, as you go, you will become the expert on your child and his needs and that will slowly replace the pain and hurt. You will be too busy parenting. At first, you will need as much extra support as you can get!!! Any family around? Are you also caring for your disabled husband? You may have real need of assistance right now, real support.

My child, at 3, had echolalia, was starting to have temper tantrums, seemed OK mostly except sometimes really NOT. We were so lucky to get an early start on his speech, OT, play therapy, therapeutic preschool. He has had lots of outside help and intervention. All along he has made constant progress, and at age 8 he is way verbal, funny, has many friends, is learning how to moderate his own sensory system and control/deal with his big feelings, is doing great at school, and is the joy of my life. Does he have difficulties? Yes. But being different, while hard, can also be interesting, even wonderful!

But I do really want you to know that grieving is part of the process here, and giving yourself time to feel pain is healthy, even though it bites. Stay in touch, let us know how things are going, esp. after your appt.

yours,

Sara
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