Chaz Moms and Moms-to-Be Chat (everyone welcome)

Discussion in 'The Fire Hydrant' started by jenv101, Oct 23, 2012.

  1. -bogart-

    -bogart- Member of WHODAT Nation.

    Joined:
    Jun 9, 2008
    Messages:
    3,192
    Likes Received:
    0
    Trophy Points:
    0
    Location:
    South East Louisiana

    Ow Paige , My heart breaks for you . Coming to terms with having a diffrent kid is hard. I know how I felt with Caleb and can sympathize with you.
    If you ever need to rage , just hollar. It is not Fair and will never be fair , but I am positive you will teach him how to cope and have a good life. Who cares about normal anyway?;)
     
  2. Paige

    Paige Let it be

    Joined:
    Jan 13, 2007
    Messages:
    7,359
    Likes Received:
    0
    Trophy Points:
    0
    It's not the fact he isn't "normal" that breaks my heart. It's how confused he is in day to day life. He doesn't know his name and that is incredibly challenging. He has learned how to talk a bit in the last six months. He can count to ten, but all that has started is an obsession over numbers and when you try to redirect him he beats his face into hard surfaces.

    A lot of the time he is really happy. I love him just the way he is and if he never had to leave a "safe" environment it would be fine but he has such a hard time coping with day to day things. I don't even know how to explain it but he almost looks fearful when he just doesn't get it.

    Its also hard because I am a single mother with very little help at the best of times and no help 99% of the time. I get so frustrated with other people who hardly know him telling me he isn't going through anything, I just need to do y or z and he will get better. He has seen numerous professionals and they all say its pointing towards the same thing. I think thats a really huge indication something is up.

    :(
     
  3. -bogart-

    -bogart- Member of WHODAT Nation.

    Joined:
    Jun 9, 2008
    Messages:
    3,192
    Likes Received:
    0
    Trophy Points:
    0
    Location:
    South East Louisiana
    that came out wrong , not as in you are sad he is not normal , just the challenges he will face as he grows is what i meant.
    Caleb while is not self destructive , will never live on his own or be able to care for himself. i can empathize with the worry and heart break.
     
  4. Paige

    Paige Let it be

    Joined:
    Jan 13, 2007
    Messages:
    7,359
    Likes Received:
    0
    Trophy Points:
    0
    That must have been hard to deal with. How old is Caleb and when did you guys find that out ?
    I am trying my best to cope with it and often i feel fine. Days like today though I am not doing so well.
     
  5. -bogart-

    -bogart- Member of WHODAT Nation.

    Joined:
    Jun 9, 2008
    Messages:
    3,192
    Likes Received:
    0
    Trophy Points:
    0
    Location:
    South East Louisiana
    Caleb was a normal healthy child hitting all his development milestone right on target , walk talk and count letters the whole shebang. The june after he turned 3 he was bitten by a mosquito and contracted the West Nile Virus. He was eating pickles we had just brought in from the store and started having a seizure out of no where. six months later and 6 days out of the hospital during that whole time we have a diagnosis of Idiopathic Pediatric Epilepsy , in other words he has seizures and they cant pin point an exact reason. He is longest has been 4.5 hours long and they do not stop on there own. He has a seizure and goes to the picu at least overnight. Of course i blamed all the delays he was now having on the heavy meds he was taking (up to 15 pills a day at one point). When he started school was when It hit me. He was not normal anymore and it was not completly the meds. He now is 13 and in 6 grade but only doing 1st grade work. I often feel like my son died that fatefull day and the aliens left me with a doppleganger. All the hopes and dreams I had are gone , now i just dream of a month seizure free.

    my advise is grief , get it out , only allow yourself to bottle it up for a bit. you have to let it out of it will win and you will break. venting is good , screaming is also . hugs
     
  6. Paige

    Paige Let it be

    Joined:
    Jan 13, 2007
    Messages:
    7,359
    Likes Received:
    0
    Trophy Points:
    0
    My goodness I can't even imagine going through that. Briggs has had siezurs before. They are so scary.
     
  7. AllisonPitbullLvr

    AllisonPitbullLvr New Member

    Joined:
    Oct 4, 2012
    Messages:
    886
    Likes Received:
    0
    Trophy Points:
    0
    I'm so sorry for both of you. :(
     
  8. milos_mommy

    milos_mommy Active Member

    Joined:
    Oct 14, 2006
    Messages:
    15,349
    Likes Received:
    0
    Trophy Points:
    36
    Paige, I'm so, so sorry you're going through that, I can't imagine what it must be like to watch your child get so distressed, especially at such a young age. Is your boyfriend at least supportive? Or other family?

    Try to remember, that while maybe Briggs will never be neurologically "normal", there is a very good chance he will (albeit it with hardships most of us won't), function just fine in this world. Especially since you're getting him help now...there are SO many advances in autism, both towards a "cure" and finding out how to help those with autism cope. I have friends who have autism spectrum disorders who's parents were told they'd never speak...and now they hold "normal" jobs, have graduated college, and in most cases an acquaintance would never even know about their disorders. Look at some of our chazzers who have autism...they have plenty of hardships, more than anyone without autism will ever know, but they also have happy, relatively healthy, "normal" lives.

    It's different for everyone, and you won't know what the future holds until it comes, but my point is that: an autism spectrum diagnoses doesn't mean what it meant 50, 20, or even 10 years ago. And with the advances in both neurology and psychology that have been made during those time periods, imagine the strides in science and medicine that will be made during our children's lives. As long as Briggs has a Mama who's willing to fight for him and get him the help he needs, he'll be ready to get through anything. I can't imagine how hard it is to have a toddler that self harms in frustration, but I'm confident that with the right guidance you will be able to stop that behavior. I'll keep you both in my thoughts and hope that happens as soon as possible.
     
  9. -bogart-

    -bogart- Member of WHODAT Nation.

    Joined:
    Jun 9, 2008
    Messages:
    3,192
    Likes Received:
    0
    Trophy Points:
    0
    Location:
    South East Louisiana
    Thanks for that , What can you do really , he is my child and I would die for him , so living for him is not a problem.


    I really try not to let it get me down because the one thing I learned the very first time he was in the PICU when he was 3 , No matter how bad it seems to me and how overwhelmed I get , there are other little babies and families who are much worse. I was rushed out of PICU when the baby next to him DIED. He was early and had problems. I saw his dads and moms heartache and held them while they cried. So yeah the seizures are bad and could kill him if not controlled , but
    I thank god everyday he at least will come home with me (knock on wood) and is a great sunshiney smiliey kid.
     
  10. Paige

    Paige Let it be

    Joined:
    Jan 13, 2007
    Messages:
    7,359
    Likes Received:
    0
    Trophy Points:
    0
    Thankyou for the kind words. Thats a very good point about how far we have come and how much farther we will in his lifetime.

    I feel the same way about Briggs. I am also really glad he is my child. I love him for who he is, not despite it.
     
  11. Dizzy

    Dizzy Sit! Good dog.

    Joined:
    Sep 14, 2005
    Messages:
    17,761
    Likes Received:
    1
    Trophy Points:
    36
    Occupation:
    Not enough.
    Location:
    Wales
    This pulls at me. Many years ago I had a talk from a wonderful woman with disabilities, who set up a charity to support parents who have children with disabilities. She talked about parents finding out their children aren't "perfect" and the emotions that brings, the grief, anger, frustration and mourning for those things you dreamed of.

    But then she talked about how they would help parents recognise the strengths they had and the good times they would have.

    They used to give parents a pack, that contained a letter from the new born child to the parents. Omg, tears....

    I can't imagine how it find out my child has a disability (physical or cognitive or otherwise).

    What I do know is you don't meet many parents who aren't able to cope, don't have amazing kids, and aren't an inspiration. I sometimes think these things being out the best in us, and you see amazing things happen because of it.

    It might be worrying, but it could also be the best thing to happen to you both :) for lots of OTHER reasons.

    Sorry, that turned into a waffle. I just never forgot that talk. Everything will be ok :) Briggs will be ok :)
     
  12. Grab

    Grab Active Member

    Joined:
    Jan 13, 2005
    Messages:
    3,374
    Likes Received:
    2
    Trophy Points:
    36
    I didn't do prenatal classes at all. I'm not one for groups, I find classes awkward, and figured that I could learn all I needed to know from a book/the internet. I apparently did as there was nothing I was confused/baffled about
     
  13. -bogart-

    -bogart- Member of WHODAT Nation.

    Joined:
    Jun 9, 2008
    Messages:
    3,192
    Likes Received:
    0
    Trophy Points:
    0
    Location:
    South East Louisiana
    That is such a grand Idea Dizzy , There are so few programs here I have been trying to figure out what I want to do about it. IS there a link I can browse and be inspired by?
     
  14. Dizzy

    Dizzy Sit! Good dog.

    Joined:
    Sep 14, 2005
    Messages:
    17,761
    Likes Received:
    1
    Trophy Points:
    36
    Occupation:
    Not enough.
    Location:
    Wales
    I've just been scanning google to find her.... She was a disability rights campaigner. It was mainly for physical disabilities.

    It's driving my batty! It was a few years ago now, but I know I have the work we did for that course somewhere at home, I'm going to find it and find her name. I seem to remember she did have a website, and went round doing seminars and talks.

    It was so good, they'd see parents in hospitals and it would give them some hope in all the confusion.
     
  15. AllisonPitbullLvr

    AllisonPitbullLvr New Member

    Joined:
    Oct 4, 2012
    Messages:
    886
    Likes Received:
    0
    Trophy Points:
    0
    Bittersweet day. My first baby shower and my first day without my beautiful old dog.

    Nice to have a distraction though.
    My friend dug up this photo she took of us a few years ago at an anti-BSL rally in Toronto.

    [​IMG]
     
  16. milos_mommy

    milos_mommy Active Member

    Joined:
    Oct 14, 2006
    Messages:
    15,349
    Likes Received:
    0
    Trophy Points:
    36
    Allison, that's a beautiful photo! I'm sorry for your loss...I hope you enjoy your shower. ((hugs)).
     
  17. AllisonPitbullLvr

    AllisonPitbullLvr New Member

    Joined:
    Oct 4, 2012
    Messages:
    886
    Likes Received:
    0
    Trophy Points:
    0
    Thanks MM.
    There were two little dogs there, so the topic of dogs was brought up a few times but thankfully no one asked me about her.

    And we got some really nice gifts for baby so it was a lovely day. And I feel huge but pretty since I'm wearing real clothes for the first time all weekend.

    [​IMG]
     
  18. Taqroy

    Taqroy Active Member

    Joined:
    Oct 7, 2009
    Messages:
    5,566
    Likes Received:
    0
    Trophy Points:
    36
    Occupation:
    3
    Location:
    Colorado
    ((((hugs)))) Allison. I'm so sorry for your loss. And you look great - I was just looking at my 33 week pictures and omg I look enormous. Short torso ftl.
     
  19. Taqroy

    Taqroy Active Member

    Joined:
    Oct 7, 2009
    Messages:
    5,566
    Likes Received:
    0
    Trophy Points:
    36
    Occupation:
    3
    Location:
    Colorado
    Falon had her two week check up today and she weighs 6lbs 12 oz (her birth weight was 6lbs 2oz) and I am so happy. They made me super paranoid about her weight gain/eating in the hospital so it was awesome to hear that she's ahead of the curve now. Also, one of the few benefits of pumping and bottle feeding is that we can switch off feedings at night - I actually got 4 hours of uninterrupted sleep last night. It. Was. Awesome.

    And for anyone interested, here's a synopsis of Falon's birth. :) I stole Jen's format.

    Falon Avery N
    Born at 10:08 pm at the hospital on March 24, 2013
    6lbs 2 oz, 19.5 inches

    My water broke at 7:30 am on Sunday (apparently only 15% of women have their water break before active labor - I'm SO GLAD I wasn't at work). After several hours of denial I called the hospital and asked what we should do. When the answer was "You should come in now" I insisted that I should call my doctor first and when my doctor said "You should come in now" we packed our bags and headed in - after breakfast.

    We got to the hospital at 11:30 where I was promptly hooked up to monitors and tested to see if my water actually broke (they tend to think that you've just peed yourself which is hilarious - I've never peed that much in my life). After it was determined that I was actually in labor (2 cm dilated and 90% effaced) we were admitted to the hospital and I started getting real contractions shortly after.

    I contracted pretty regularly until 7:00 when they checked me again and I was still at 2 cm dilated. Which was incredibly depressing and since I was not able to relax at all after contractions I asked for an epidural. I got the epidural and they started me on a slow pitocin drip at 8. The epidural was freaking fantastic - I could still move my legs but I couldn't feel the contractions and I was able to relax for the first time in hours. And, best of all, Matt and I both caught a short nap and when they checked me again at 9:30 I was 10 cm and ready to start pushing. I only had to push for 30 minutes before Falon was born.

    There is absolutely nothing I regret about the experience - nothing was pushed on us, everything was discussed with us thoroughly and my labor nurse was incredible. Overall it was a really great experience.
     
  20. Barbara!

    Barbara! New Member

    Joined:
    May 23, 2012
    Messages:
    1,457
    Likes Received:
    0
    Trophy Points:
    0

Share This Page