Thursday, July 12, 2007

Frustration.....



Treadmills
Our precious little girl is having such a hard time letting us know what is on her mind! Autism is a terrible condition that blocks the connection between the mind the the verbal ability. This isn't always the case, but many times it plays out this way. Our little girl is so frustrated much of the time because she can't express her wants or needs. She is getting better using her words, but it is still such a struggle. When she is overwhelmed with frustration she has a tantrum, which is the only thing she knows to do:( It makes all of us so sad and frustrated as well..........if only there were a way to help! Now that I will have her with me at least two days a week with an overnight in between I am going to try some new methods of working with her that I have heard and read about! She too is longing for boundaries (just like her grandma) and I am going to try putting some tight structure into her visits......not to be mistaken with discipline! I think she is most comfortable knowing what will happen next and what the rules are. We are going to start working on this with hopes of some breakthrough! Actually, we started today. The doctor doubled her dosage of medicine as well today. One of the symptoms of Autism is irratic sleeping habits. Her mom and dad are so tired much of the time because Margo will get up in the night and stay up until morning. Since someone has to be with her......someone isn't sleeping! This is so hard on their marriage, their new baby and themselves personally! Margo is a full time job right now and we all must pitch in.......to see this through:) It is 11:00 pm and guess who I just heard overhead running around? You guessed it........she has been sleeping for over an hour:) It looks like it is going to be a long night......

9 comments:

amy said...

I really wish they would find a cure for autism. My daughter is not autistic but just speech delayed a bit and that's been hard enough for us. I can't imagine having a child with autism. But you are doing such a great thing with watching her and working with her on it. It's nice for you to spend time with her and nice for mom and dad to have a break for their sanity! Is she in therapy at all? Our daughter's speech therapy hasn't helped her at all it's just a matter of natural progression I think. We have also used a few signs that she likes to use to communicate sometimes. Maybe sign language would be helpful for her and you? Good luck and I send positive thoughts your way.

madrekarin said...

I have a 21 year-old son who was born deaf and with CP. His life has been a series of ups and downs. I can relate to being awake all night, watching and wondering what he will do. I have been at the receiving end of his frustration, and sometimes I wonder how long I can endure. I have also experienced extreme joy and amazement at the capacity for love this child of mine has. His sense of wonder and awe have not been stifled by age. Even though I have never heard it, I know his "voice". He expresses all of his emotions freely, through signing and through his eyes. Especially his eyes.
Enjoy this time with your granddaughter. I know how hard it will be. But I also know how wonderful it will be, as well. You are giving your daughter and SIL a great gift. But the gift you will receive will be much greater.
I'll be thinking of you.

Sue said...

You sound like you are on the right track Linda. Since autism affects each child differently it is hard to know what to do. But you seem to have great instincts, patience and most of all love for that sweet little girl.
People often say that autistic people don't have emotions. This is not true!!!!! They just need help to find a way to convey what they feel. A grandma's love can work miracles!!!
If I can help in any way or you ever just need to talk, I am here.

wendy said...

How wonderful that Margo has so many people on her side trying to help her. If I could send you a box of energy through the post to help I most certainly would. Best wishes to you all from over here.

Angela said...

I really can relate to that. Although my having epilepsy is not the same thing. They are both Neurological problems. I had sleep problems due to medications that I took for years.Although I still take meds now, they aren't as hard to handle. I'd have seizures sooo bad and scream "Mommie, Mommie" In the middle of the night. Waking EVERYONE in the house up. My parents had to deal with that for years. I had 7 seizures a day normally but right before surgery I had about 100 a day. I had brain surgery...which helped my seizures. I only have to take medication to keep them under control. I'm telling you all this because I am trying to give you hope. If they figured out a way to help me. In the future, they may figure out a way to help her. KEEP THE FAITH!
*HUGS*

Judy said...

Not much I can say really but good on you all for supporting each other and to you for being so hands on. I hope things get better for you all soon.

My Treasure Barn said...

I found you blog on my daughter-in-law Mica (Garb-oodles) blog and I love it. You do some pretty neat stuff!

I am just getting into this ATC, collage world and I love to see what all of you talented artists are doing.

Hope you don't mind if I put your link on my blog and my website.

You have beautiful girls! What a delight they must be.
Thanks
Patti Koosed/Treasure Barn

Lori said...

Linda, what a blessing you must be to Margo's parents. She is a beautiful girl and it makes me sad that she is struggling this way. God bless all of you.

Laura said...

Blessings to Margo and your entire family..I hope your new methods work well. Thinking of Margo often.