Topic of the Week July 6-12, Coping with your child's disability*Group Announcement*
Topic of the Week: July 6-12
How did you feel when you first found out your child had a disability?
Who told you? How did you feel?
How did you handle it? Who did you tell? Did you tell people right away? How did they react?
How do you feel now and how are you dealing with it now?
Do you have any advice for other moms?
*Special thanks* to Jenn (dnjbowen) for our topic this week.
Group Announcement 6/8/2007
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How did you feel when you first found out your child had a disability?
I would first like to start by saying that I did not even find out that anything was wrong with my daughter untill she was over 1yrs old..and not physically diagnosed with having Mild C.P. untill the age of 2yrs old...I knew that something was wrong when she was not meeting her mildstones.( sitting, Crawling,Walking, ect..) The doctor's kept telling me No she is fine..My daughter has had so many different mixtures of problems..That i felt like I was on an emotional roller coaster that was gonna just never end..My daughter had to have surgery on her spine when she was only 1yrs old.. I was very scared over whelmed.. and angry.. But I got through it and thought that this would take care of all her problems..It was then..When it did not fix her gross motor problem's That it just hit me soo hard it felt like they were guessing at everything..I did not know what to think..How to feel..or what to expect..It felt like every time I thought things were gonna be ok..They got 10x's worst.. I never ever expected to have a disabled child..This was something that I was not prepared for..and could never have been prepared for.. It was something that I did not choose..instead I and she was choosen..and I dnt know why..I will probably never know why..It's just one of those things that there is No answer for...When The time finally came and they diagnosed her with having Mild C.P and Disproxia ( Speech delay)..Due to her lack of oxygen during and after birth..I was just once again... Very saddd..Scared..overwhelmed..confused.. and..hurt..I would ask why?? why me?? Why my daughter?? For a very long time I would think what if....... what if The doctor's did something different?? what if I did something different??? Would she be different?? would she be ok today?? and there were no answer's...But i knew that now that we had a diagnose..I had to pick myself up..shake off..and start doing everything I could to make my daughter's life and future...
Who told you? How did you feel?
I was told she had Mild C.P. by her developmental ped..I felt very scared overwhelmed..Hurt..and Sadd..But at the same time I kinda felt some realif..because now we had a diagnose.and I could move forward...with her treatments..
How did you handle it? Who did you tell? Did you tell people right away? How did they react?
I would have to say for being a first time mom..and never ever expecting to have a child with disabilities..It was hard..It was heart breaking..but i handled it the best that i could..I told My husband and everyone in my family..and anyone who was immeditaly involved in mine and my daughter's life..As soon as I found out i shared the news..They reacted the same way..very shocked.. overwhelmed..sadd and asked alot of questions.. But they new that this was time that I really needed them..and they were there for me and her every step of the way..Right by our sides..They were very supportive and never gave up hope..There love is just unconditional...and I am greatful everyday that I have such a wonderful loving supportive family...
How do you feel now and how are you dealing with it now?
I still have my days..and my moments..some days are harder and more challenging then other's..But I feel like a stronger person..A better person..a better mom..I feel very thankful and very grateful..that my daughter is here and is well..because I know that my life and my daughter's could be alot worst then what they are..Sometimes..there are still and probably always will be those what if's..in the back of my mind...But i have learned that I cannot Dwell on the past of what has happened.. because i cannot change it..Instead i look at each and everyday as a New and better one..I have since had another child alittle boy.. and I thank God everyday for giving me both of my children..and the oppurtunity to be a mom..I treat both my children the same I love them both the same... They get along great..and I would not give up or change my life for anything...
Do you have any advice for other moms?
My advise for other mom's would be to love your child the same... Never ever give up hope..Stay strong..and believe..Try not to dwell on the past..But instead focus on your child's future..Remember you are your child's best advocate..you are there Voice..Fight...for there right's and there care..and Do alot of reasearch..Try your best to raise your child normal..and to get them as independent as possible..Start or stick with early intervention services..therapies and schooling.. dnt feel bad about seeing or calling the doctors and ask for referrals..Get other opinions.. and remember what they say " It takes a special person to have a special child " I do believe that....Every person is different and every child is diiferent..You need to just try and take 1 day and 1 step at a time..One last thing before I close... The pain and the emotion's that come along with this you will never forget..But always Remember that your are not alone...
Being a first time mom when my son was born was scary enough, but to be born 2 months early and having problems, my heart sank. I've heard my mom talk about when I was born (being a premiee myself) I wasn't really worried at first. It took afew days for everything going on around me to sink in, not to mention the meds to wear off so I have a fighting chance to really understand. We started getting the news slowly, so it was easier on us, at least we didn't get everything all at once, I'd have gone crazy, which is what I just about did anyway. We didn't find out about his autism until he was almost 3 and even though we thought that maybe he was the doctor wouldn't say yes or no and we ended up going to a different one. It upset me, but not as much as already thinking it, but not getting it from the first doctor.
Who told you?
We found out he was deaf and had CMV at the hospital before he was released. We found out how much hearing loss at the children's hospital afew months after he was born. We learned about his allergies and asthma vefore his first birthday. He learned and his CP after the had a fever enduced sezier on his second birthday. And after many fights with doctors and therapy programs we found out that he had autism right before his 3rd birthday.
How did you feel?
Depends on when you want to know. I've felt everything from happy to sad to going crazy and being upset. There were days that I just sat around the house and cried. Other days I decided that this is what we've got and we got to figure out what to to with it.
How did you handle it?
The best way I knew how. One day at a time.
Who did you tell?
Family and friends. And anyone who asks me about my son when we are out.
Did you tell people right away?
Yes. Most people we knew saw that our son had some problems, but as we found out what was going on with him we shared with our family and friends. They wanted to know so that they could help us if they could or at least support us.
How did they react?
Surprised in many cases.
How do you feel now and how are you dealing with it now?
I feel lost and out of control most of the time. Still going on day by day. Fighting with doctors, insurance companies and usually my son (he's very strong willed and so am I and I just want to get over some of the things going on right now)
Do you have any advice for other moms?
Take it one day at a time, sometimes you win sometimes you lose, but as long as you love your child and they know you are there for them it's always worth it.
i was terrified! my son starting having nonstop several type seizures while i was waiting tables...i had to actually be talked into entering the room b/c i did not want to see a seizure after overcoming childhood epilepsy & all the horror stories i had heard. After the seizures started causing brain damage...i felt like my son had died...and did not recognize this lil person.
i felt ashamed...as i had let my ex severely beat me during my pregnancy
Who told you? How did you feel?
After about 6 doctors and 4 hospitals...and long months in the icu...a Dr..told me what he had. He said only 19 kids in te whole midwest had it...and to prepare for his death around 17-24 yrs old. I felt like i was doomed and wanted to crawl in a hole & die myself. Then I wanted to know EVERYTHING about the disorder...and was lucky enough to have a tech professor in psych class let me read what i wanted in the DSMV. The more I learned...the less scared i got.
How did you handle it?
Like I handle everything...I freak out & let it go...I had two other children....an abusive man in my life for ten years...and i wanted the best possible treatment. We tried several drugs...and went thru several neurologists just to make sure...finally after 4 weeks in the icu...we found a halfway decent meds regimine...but the disorder changes...and so must the meds along with it. Our Dr was extravagant they said...but he listened to me when i wanted to try the Vagus Nerve Stimulator...an implant.
Who did you tell? i told my family ( who immediatley said to put him in a state hospital)..told the teachers....friends...anyone who had contact with me or my children.
Did you tell people right away? Yes
How did they react? They all acted like this was too much for me & the other two boys. Many ppl in my circle of friends abandoned me for more 'normal' company..and as i said...my mother & family kept persisting to put him away.
How do you feel now and how are you dealing with it now?
Im tired. After ten years...and getting outta an abusive situation...there isnt much Glory when no1 will watch your son so that I can work...go back to college. I deal with that by teaching myself...who needs a stamp of approval?....I dont sleep much...i eat rarely...and I try and help early mothers dealing with seiizures...i developed an ez first aid for seizures...joined DV groups..and try to encourage strongly for women who are pregnant to leave thier abusers...also women of any sort...but especially children! I tell them the most important thing is to get that oxygen to the brain..LGS often accompanies other disoders b/c mostly is found in the brainstem that controls the WHOLE brain.
The VNS implant has decreased the seizures & recovery time. The Diastat puts me in control so i can help him at home vs going to ER everytime he has a bad one or clusters of them.
Do you have any advice for other moms?
YES! DONT STAY WITH ABUSERS ESPECIALLY IF U R PREGNANT>>>GET AS MUCH INFO AS U CAN> DONT SWEAT THE SMALL STUFF AND REMEMBER GOD SENT THEM TO U B?C HE TRUSTS U>
Well, I never really "found out." Up until the last several months, I didnt think of my son as having a disability. He just got diagnosed with Early Childhood Developmental Delay when he started Preschool. Before that, he was just developing at his own pace.
Who told you? How did you feel?
My mom had a lady from Project Teach come to the house for my little sister. Well, the lady looked at my sis and said, "nothing going on there." Looked at my son, and said, "he's the one we need to talk about." My baby was about 6 months old at the time. The word she used was "abnormal" and it wasnt meant to be a bad thing. LOL. I think I felt overwhelmed. But after our time in the NICU and hearing about all the "risks" I was open minded.
How did you handle it? Who did you tell? Did you tell people right away? How did they react?
I learned early on to say what he IS doing as opposed to what he IS NOT doing, and that has helped alot. I dont generally tell people that there's anything different about my son. People in passing say hi, ask how old he is, and they are satasfied. Now, people who know my baby and have a sincere interest and care, I will talk openly about his development, and I think it helps that they understand.
How do you feel now and how are you dealing with it now?
I kind of get a bit anxious sometimes. He's only getting older and his development is very steady. He continues to progress, but slowly. Other than that, I feel great about how I am with my son, and how I feel about my son. He is the greatest blessing that God could have ever given me. Every step he takes is a sign that he is in God's hands...all I have to do is love him and make a way for all the greatness that is to come.
Do you have any advice for other moms?
The hardest lesson I learned was dont talk about all the things your child CANT do! I learned this because I would talk to family that rarely sees my son about all the differences, all the things he SHOULD be doing, all the things he's NOT doing, and they seemed to forget that he's still a happy, energetic, loving child. They talked about him like he had "SPECIAL NEEDS" across his forehead in bright orange letters. After that, I would tell then, "if you spent one day with him, you would see a happy, cheerful baby, that's it." After that, I only spoke about all the things he CAN do, IS doing. Yes he's different, but he's my son, and he is absolutely wonderful.
Your child is exactly who and what they are supposed to be! Exactly and perfectly!! Dont be ashamed, dont be sad!
My sisters always ask "what if"s; "what if he was born on time...what if he was 'normal.'" I always say, "then he wouldnt be who he is." And I dont think I would like that very much!!! I love everything about my lil man and I wouldnt go back and change a single thing about him!!!
My babys doctor told me a few hours after she was born
How did you feel?
i felt like i got hit by a truck i was not happy but to upset to cry i was just like a statue
How did you handle it?
i didnt at first after everyone left my room i just started to cry i didn't stop till the next morning when i had to travel to a different hospital to see my baby
Who did you tell?
ii didn't have to tell my family or my boyfreinds family everyone was there when the doctor told me and my boyfriend my mom handle close family friends and me and my boyfreind told our close friends together
Did you tell people right away?
Our family's knew right away but me and my boyfriend spent the first 3 days that she was in the hospital at the hospital with her so we didnt talk to anybody
How did they react?
My freinds are younger like me so they didn't really know how to react but to tell me that they were sorry our family here upset my mom and grandma spent the first night at the hospital with the baby because i couldn't be there and i was so upset my boyfreind didn't want to leave me alone
How do you feel now and how are you dealing with it now?
now im still kinda scared because anyting could go wrong wth her insides at anytime but i have done my research and learn all the signs and symptoms and what will happen if somehting does go wrong so i have learn to deal with it
Do you have any advice for other moms?
just take care and love your kids but remember to also take care of yourself
I called my mom and others who I knew would pray for us. Not a day goes by that I wonder if he is still breathing or if its getting worse. He's iron is dropping and the drs are on alert for a blood tranfusion as well as when the feeding tube will be placed. I work a full time job with 3 other children too . My grandmother watches him and holds him the whole time she has him. My aunt lost 2 twin boys at 29 weeks gestation. We as a family cant lose another baby now.
I really dont have any advice for other moms, other than you cant be an over protected mother. If I wasnt my son may be in the hospital right now.
Who told you? How did you feel?
The neonatetologist soon after she was born. I felt like someone had took my breath away, it was hard to breathe.
How did you handle it? Who did you tell? Did you tell people right away? How did they react?
I cried,cried and cried. I felt powerless. The only thing I could do was pray, and I did. I told everyone, all were very compassionate but they had a lot of question to ask that I didnt even know the answers to.
How do you feel now and how are you dealing with it now?
Every day that passes I become more and more positive. I see her making acheivement, smiling. laughing and I know she's happy. I talk about it, i get the word out that this does exsist, parents go through these things everyday and I support the March of Dimes 100%
Do you have any advice for other moms?
One day at a time. That's all you can handle and know that one day they will start seeing the light at the end of the tunnel.
I felt hurt, wanting to know why it happened to me. this is my first child and i had such high hopes of my child being just like everyone elses.
Who told you? How did you feel?
We found out in the hospital in the NICU. I wanted to know how this happened? i cried alot and did a lot of research.
How did you handle it? Who did you tell? Did you tell people right away? How did they react?
I didnt do very well at first, i freaked out! i told anyone who would listen i felt better when i talked about it.
How do you feel now and how are you dealing with it now?
i am very hopeful now, he is in pt and ot and doing well for his age (12 wks old). I have good days and i have bad days! i continually find things on the internet that tell me bad things and then things that are good. it is just so early in his life so we dont really know what is going to happen.
Do you have any advice for other moms?
stay as strong as u can and keep a positive attitude. dont let drs get u down, they can paint a dismal picture!
Scared, alone, angry, suicidal... I didn't know if I wanted my son to live, I didn't know if I wanted to live...
Who told you? How did you feel?
I suspected something was wrong 3 weeks before I went into labor because I was diagnosed with polyhydromnios (too m uch amniotic fluid). I was praying for a physiological problem but the problem is neurological. I was the one who diagnosed my child. When he came out my OB said his neck seemed very floppy and the nurse noticed that he was weeker on his left side. I told them to give him to me and I started checking his facial reflexes when I realized that he was not swallowing or sucking. I also noticed that he had a left sided facial paralysis. The neonatologist and the pediatrician kindof blew it off and made me take Sam back to the maternity unit. I had my son at 11am and they did not take him to the NICU until 6pm. Eventhough I was yelling at everyone and telling them that my child was not swallowing. I also told them that he needed a, OG or an NG tube for hydration and of course suctioning so he wouldn't drown on his own secretions. I'm an SLP and use to work in a NICU so I had some knowledge. After a 2 week stay at our first hospital we transferred up to Columbia Presb children's hospital were he literally got the 1 million dollar work up. It was finally concluded that Sam has brainstem leisons. He cannot not swallow, is extremely hypotonic, and I know the diagnosis will be CP.
How did you handle it? Who did you tell? Did you tell people right away? How did they react?
I was in shock for 2 days and literally could not sleep for 4 night in a row. I was a complete basket case. I didn't want to talk to anyone. I wanted to hide in a closet or lock myself in a room somewhere. The only person that I told personally wass my best friend. Of course my husband and parents, in-laws, sibs were around but they were all hysterical too and drove me nuts.
How do you feel now and how are you dealing with it now?
Now I feel more hopeful. Sam has many issues but they are not nearly as bad as I thought. We have been working with him so much doing all sorts of different therapies aside from the usual PT, OT, Speech. We also do cranio saccral therapy, he goes to an osteopathic movement center and we just started a Medek program (? spelling). I deal with it every minute at a time. Thank god I do have the best team of doctors, nurses, therapists etc... And my husband rocks. And of course my little Sammy is my bestest little baby in the world. I can't ever get enough of
him. He is completely smothered every second of everyday. I still have by bad moments. I almost flipped about 1/2 hour ago, but I am cool now. Minute by minute...
Do you have any advice for other moms?
I have so much advice, but where to begin. I say if you are part of this group then you are off to a great start. I found that support from other families who are going through the same thing is the best therapy in the world. If anyone is interested in learning more specifics of what we do with Sam or just to learn about Sam please feel free to visit our blog.
www.carrieleshin.blogspot.com
My husband and I were pregnant with our second child. We did not have any problems with the first, so you think that it will be the same way with your second child. I have a family history of heart problems, but since our first child did have any problems at all, we figured that our son would be healthy as well. At the first sonogram he (Christopher John nickname C.J.) was turned funny and they could not get a good view of his heart, but everything looked OK. We second another sonogram so we could make sure he would be o.k. At that visit the doctor came in to review the sonogram and it look different, so he wanted me to go to a speciality clinic to see and parinatologist. In the days before the appointment we did lots of research, checked lots of different websites. My doctor told me not to, but I had to know what we were getting into, since we had a 4 year old to also think about. The information that we found ranged from being somewhat positive to the baby not living past 24 hours of birth. With that information we prayed like we never prayed before. We had to drive out of town to see the specialist because the town we lived in did not have that kind of doctor or technology. That was the longest 2 hour trip ever.
Who told you? How did you feel?
We had to drive out of town to see the specialist because the town we lived in did not have that kind of doctor or technology. That was the longest 2 hour trip ever. We even checked out the doctor that we were seeing on the web to check out his credentials. He came very highly recommended. At the end of the appointment our worst fears came true. Our son had Hypo-plastic Left Heart Syndrome (HLHS). We new the spectrum of the congenital heart condition, however his was more severe. We did all the genetic testing and it showed that it was not hereditary. They even checked to make sure that he did or did not have other problems or conditions. Luckily he did not have any other problems that would make this worse. We never once thought about terminating the pregnancy. We wanted to give our son every chance possible to live the life he could.
How did you handle it? Who did you tell? Did you tell people right away? How did they react?
Ileft crying into my husband chest and him thinking that it was all his fault that our son had this congenital heart condition. The next hardest step was trying to explain this to our 4 year old daughter. Other family members we were ok telling them, but trying to explain to your other child that mommy and their new brother could not come home right away because he had a sick heart and the doctors had to make him better. I told our immediate family. I talked to my sisters on three way and we all cried. At the time I was working with several woman that were pregnant and some that did not know because they were on maternity leave. They were very sad for me and my family and they wanted to do anything they could to help us. Which was wonderful because we lived an hour and a half from mine and my husbands family.
How do you feel now and how are you dealing with it now?
I feel that we have been cheated since we lost our son right before he turned two months old. We spent most of our days in the children's hospital and only a week at home. Just knowing that he fought for every breath that he took and the fight was still not good enough to keep him here. It was right before Christmas when he passed away. It has been almost 3 years this December and it is still a struggle every day. Our oldest child still has days were she cries because she misses her baby brother. I think the hardest thing is the fact that I could not take the pain away from him or finish the fight for him.
Do you have any advice for other moms?
If there are other moms out there that just want someone to talk to I am here. The pain never goes away you just get use to it more. It is more like a numb pain that you have to learn to deal with on a day to day basis.
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- akhlass
on Jul. 6, 2007 at 4:47 AM