after five children with no health issues i found myself in foreign territory when it came to Chloe, my foure month old with ds. we knew at 22 weeks and talked to the down ysndrome association and parents. when she was first born it was all i could see. the midwifes kept saying she is a normal baby that just happens to have down syndrome. then there were the specialists the therapists and as you all know the list goes on. now at four months old all i want to do is enjoy her. not worry about her, not make appointments, not think i should be doin this exercis or that exercise. she has blocked ears at the moment so we're not sure where we stand there but other form that no health issues to date so i have been lucky but am i strange? did you all feel like this. did you just feel like cancelling all the appointments, be an ostrich and proceed as per ususal? if i do will my child be more impaired than she could be and would i hate myself forthat? i guess what i really need is a crystal ball and magic wand lol... but she is the most amazingt little girl with lovelist smile and i'm inlove with her.kim
I hope I can put my THOUGHTS into words, without sounding horrible... forgive me, in advance, if I sound... negative... I really don't intend to...
My son with mosaic DS is 13 now... I said recently to my husband, how much easier it was to enjoy him when he was a baby..because not much is expected of a baby. As he got older...THEN issues came up, etc.
So..speaking from HINDSIGHT... absolutely, enjoy her...love her...shower her with affection!! But I think you do have to be aware, that at some point, delays will present themselves. For example... I never did sign language with Jared, he was a very unhappy toddler at home, I later realized, it was because he struggled so much to communicate with me. At school they used sign, and he caught right on, and could express to them what he needed, but with me, it was a struggle. It's my one real regret. Speech delay is a common issue with DS children....Jared was about 5 yrs old before he could talk.
From all the parents I've ever met with DS children... those children who progressed the most "normally", were involved in physical therapy, speech therapy, later occupational therapy... A crystal ball would be great, wouldn't it?? I do believe though.... to give her the best future, you have to start now... and see about her ears... again, with their speech often being delayed, you sure don't want it even MORE delayed due to her not hearing properly as an infant!!
...but, definately, put your head in the sand (ostrich) with her once in a while...and just love her!! Do as much "normal" as you can with her..and give her that extra boost with all the extra appointments and therapies!!
I have never been to this board before.. this is a new one for me.. My daughter Isabel was born at the end of June and just like everyone else here.. they looked at me and told me they thought she might have downs. Well I just knew they were wrong. They sent me to the local childrens hospital to have genetic testing.. and the whole time I was waiting.. I kept thinking.. nah.. not possible. I did everything right.
Needless to say.. while I was waiting .. I researched and researched.. looking for any of the signs.. and there were a couple.. her eyes are a little exotic looking... and one of her palms is creased. So I prepared. (yeah right) So the tests come back. And she has Downs. She is so fortunate that she doesn't have any heart problems. ( Thank you god. ) But then the doctor came to me and mentioned therapys... and I thought.. yeah right... and then I thought again. I DO NOT WANT there to be delays. I want to do everything possible to give her any chance we can. And let it be known.. I have always been an ostrich... If I don't look.. it won't happen... but you know what.. BY GOD.. I have fought my whole life.. and I am a perfectly "normal" ( whatever that means) woman. Isabel has another mountain to climb.. one that I have never scaled. And I am going to help her find the rope to climb. And I am going to give her a hand on the hard rocks. And hold her hand and we will fall together. I really don't give a damn about peoples pity or stares.. She is the most WONDERFUL little baby.. and we are going to be just fine.
Thanks for listening... Renita