needabreak is offline needabreak Post #1  July 28,2009, 1:55pm
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I am so frustrated! I am 25 and have a 9 month old. I am single and trying to find romance. But my problem is that I'm having a hard time getting around her to find him. Sage has Isovaleric Acidemia. 1 in 250,000 people have it. There isnt anyone else in our city that has this disorder, so I am left to rely on people thru email to discuse problems. I dont like bring people over to my home because it is obvious that my daughter has a very special need. I have never tried to hide her problems from anyone....which has left me date less for a while. Once people find out how stressful my life can get, they tend to run. All my friends have actually "packed up and left" when the going got to rough with my situation. My parents have been great with helping out when I do have a date...but when it is all said and done, the guy never calls again, or I get to busy to stop and think about contacting him.
How do you handle this? I had a hard time dating before she came along, now it's near impossible. Any advice would be great. Thanks in advance!
Ann
 
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dmc80809 is offline dmc80809 Post #2  July 29,2009, 9:51am
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Ann...

I have never heard of this disorder and it certainly sounds like a lot for you to be manging on your own...

Our kids bring us a great gift...they bring special people into our lives...and screen out the ones that can not be truly supportive...

I, too, lost a few friends when my son was diagnosed...it was painful, but his disability also brought the most incredible, wonderful people into our lives...

Don't take to heart if men reject your situation...sweetie, you need someone really strong for you and your baby...and it will be worth the wait...

In the meantime, please take care of yourself and don't be afraid to ask for all of the help you need to raise your daughter...

(big hug)

Dana
 
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needabreak is offline needabreak Post #3  July 31,2009, 10:21am
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Thanks Dana,
I have asked for help...but sometimes I feel that my asking gets to be to much. As of yesterday I was given the ok to let Sage sleep through the night. What a great feeling that was! But I have asked people for help when it comes to things like shopping, and searching for a job. It gets hard to take care of a baby that doesn't have a special need, but here I am...almost feeling alone and very restricted.
I almost wish I had stayed with her dad...just so that I wouldn't have to do this alone, but then I think of how poorly he treated me and how little he cares about Sage and realize it was so worth it to come home. I just hope that right guy comes along within a reasonable amount of time. I keep saying that if I havent found anyone by the time she is 2, I'm just going to go at it alone and accept it. Guess we will see. Thank you for your advice
 
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kittycat73 is offline kittycat73 Post #4  August 10,2009, 12:57pm
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Hey Everyone I am new and I know how you feel. My daughter which is now 6 years old has DiGeorge Syndrome { It's rare too } and I have staied with her through out hospital stays, There outside the surgies doors, etc... and I had NO-ONE to hold my head, Still don't and I would love to have someone to put their arms around me to tell me it's okay or take some of the stress off of me. I would love to date !!! They take a look at my daughter and that is it--- I end the date. I know what they are thinking; I think I do. Am I wrong ?????
 
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man_in_boise is offline man_in_boise Post #5  March 25,2010, 2:34pm
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Hi girls,
I have a 16 yr old son with Sensory Processing Disorder. Not much is known about these disorders (there are several types, all with sub-groups) and many children are mis-diagnosed with ADD/ADHD. It was difficult getting a diagnosis for my son as Dr's have no incentive to make this diagnosis. Once a child is diagnosed with SPD they are referred to an Occ. Therapist and there is no pill for these children, so the Dr doesn't get the monthly office call or the "kickback" from the pharmaceutical company for prescribing drugs...ie.: no incentive.
I was granted custody of my three children after their mother was convicted of child abuse/neglect and child endangerment in 2003. My oldest son is grown now and my twins are 16. My twins (Jennifer&Jeremy) both have Sensory Issues but my daughter is able to function "normally" where her twin brother "seems" normal to the layman but after continued contact it becomes very apparent he is not "normal" ( I hate using that word) This makes it especially difficult to get help as most physicians are not familiar with SPD and tend to lean more toward Asberger's Syndrome or ADD/ADHD both of which can be medicated.(turned into zombies)
Jeremy is a "Sensory Seeker" which means he has low tacitile input registration and constantly needs to touch people and in-animate objects. He wants to hug people constantly and when he became a pre-teen his friends and family began to notice this "wierd" behavior and even his twin sister said, "Dad it's kinda creepy that he wants to hug all the time". Grown women that I have tried to date in the past think it is "sweet" that he is so affectionate and tend to re-enforce the behavior which is detrimental to his therapy. Now that he is nearly grown they too find it "creepy" and don't want to get involved with a "problem child". So don't feel alone in the world ladies as I too am faced with having a grown son at home that has problems making rational decisions. He is doing well with his therapy and they tell me he should be able to support himself by the time he is 20 or so but in the meantime I can't carry on a relationship with a woman because of all the attention I must give my son. I have resolved to remain single until he can be independent and I have been single now for many years. I just ignore the smiles and the flirtacious gestures knowing that it will just lead to disaster when they find out about my son...So be strong girls and remember that you decided to have a child and there was no guarantee that the child would be perfect...Accept your responsibility as a parent and move on with your heart dedicated to helping your child be all they can be. They did not ask to be here and if they had a choice they would choose to be healthy and productive. There is no blame or shame and there is no guilt...only resolve...
 
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dmc80809 is offline dmc80809 Post #6  March 31,2010, 7:57pm
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Don't rule anything out...

I never thought I would meet someone that would understand all of my challenges with my son...I have been with a man for the last year and a half, and as time goes on, my son's disability is becoming less and less of a concern, for all of us...

We both put our kids as the number one priority...we see eye to eye on this, with or without the disability...

Man in Boise...don't be so quick to dismiss those smiles and gestures...
 
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