Pregnant after having a disabled child?

mjdenton · June 2016

Any other moms out there that are pregnant after having a child that is disabled? Our 2nd baby has Cerebral Palsy, but is very high functioning. We are now pregnant with #3 and it's scarier than I thought, even though our chances of having another with CP is very low.

kadams2468 · June 2016

My husband and I lost our baby last summer with Down syndrome due to a flattened umbilical cord and other complications. Leaving the hospital with your baby's footprint but no baby is so hard. I am pregnant again and we know the chromosomal risk is lower this time. We are still scared though. Each appointment puts our mind at a little more ease. Hearing a strong heart beat this weak was a relief! I wish you well in your pregnancy

jab3-2 · June 2016

My oldest was diagnosed with Autism and has a pretty severe speech delay although we are grateful he's verbal at all because for a long time he wasn't. At almost 6, we can still barely understand what he's trying to say half the time and are constantly interpreting for others. Doesn't help that he's the size of an 8 yr old. Kids are starting to make fun of him for his speech because he doesn't appear to be "different" otherwise, but it just sucks because he's trying so hard and is desperate for friendship. There's a LOT more to it than that obviously, but the speech is what's standing out the most right now.
My youngest was also actually diagnosed with ASD, but so high functioning it isn't even noticeable (unless you really know what to look for.) She's been regressing a lot lately though which is making me nervous, but I guess only time will tell. I can't say I'm not a little nervous about my 3rd one, but I'm certainly not going to let it take over my thoughts.
I'm so sorry you had to go through that kadams2468. Congrats to you both on the new pregnancies

phlox728 · June 2016

My 3rd was born at 28weeks gestation and had numerous medical issues along w an unknown genetic defect. She passed away when she was 6 months old. We have been told by numerous specialists that she was our 1 in a million baby and the chances of a repeat are nill. But we are still very nervous. I had high blood pressure the entire pregnancy so I'm especially worried about another pre-e diagnosis and NICU baby.

jab3-2 · June 2016

I'm so so sorry you lost your little baby girl and I really hope everything will be ok for you this time.

kadams2468 · June 2016

Hi Jab 3,
Thank you for your kind words to us.

I am sure it must be challenging for your whole family. You want your son to be happy. My husband is a special education teacher who teaches in an elementary classroom with children who have autism and who are nonverbal or limited in their communication skills. He has used sign language with some kids. He also said he uses picture communication boards. Realistic pictures (as well as the word if they can read) of Cheerios, toys, bathroom etc. for communication. It helps to relieve the child's stress and those he/she is communicating with. There are also some computer communication devices out there. We were also wondering if there was a great autism support program in your area for both your son as well as the rest of the family. We found a wonderful local group for folks involved with Down syndrome. They have events for the people with Down's syndrome as well as groups and workshops offered to help the families better help their children about how to help their children with social issues. As well as sharing the different laws and services available to people with special needs. I am a reading teacher at the middle school level and swimming diving coach. We have had kids with many different special needs on our team over the years and the 40 girls really take to the children. They treat the kids as just another team member. A wonderful example happened last season when we were at an away meet. Every girl had finished the swim race except for our one young lady with special needs. Everyone in the pool including the lifeguards and both sets of fans in the stands was standing up and cheering for this girl. The other coach and I are on the side of the pool encouraging the girl on. It brought tears to your eyes of the kindness. She got out of the pool with the biggest smile on her face. It must be hard to see your son struggling to make friends. Are there small group activities he could get involved with? Our local ymca has a program for kids with specials needs and they buddy up with other kids who don't have special needs. It seems to be going well. It is important for all people to learn the wonderful qualities that all people have, no matter their appearance, or speech, or anything else that makes them different. I wish you and your family all the best!

kadams2468 · June 2016

Hi Phlox, I am so sorry about the loss of your daughter. I want to wish you all the best in your pregnancy.

mjdenton · June 2016

Thank you for sharing, saying prayers for your sweet babies with you and in heaven

phlox728 · July 2016

Thanks ladies!

jab3-2 · July 2016

Hi kadams2468, I'm so sorry it took me so long to write back. I'm not even sure if you're still around, but I hope so. What you wrote was really nice for me to read and made me feel better about my son so I appreciate that. It feels really good to know people care, enough that you and your husband took the time to discuss our situation! I haven't been on in a while or posting much at all lately because I've been really stressed out about our housing situation right now. Without getting into all the crazy details, let's just say it's humiliating and downright scary at this point.

Anyway, we do have him in a decent program for kids with autism where we live that's helped a lot, but it's more about home based services and helpful safety/learning products than about community inclusion stuff and respite care. However, just this month he started a summer program with other kids he's been forming some friendships with so that's great. It provides him with a ton of structure as well which he really needs including extra speech services which is awesome. He has therapy after he comes home too. I think it's awesome you're a reading teacher, how do you like doing that? That was something I always wanted to do long before I even had kids. Anyway, hope you and everyone else here are doing good.

Completely off topic, but I'm worried because with the Doppler? I think it's called that my doctor used, we couldn't hear a heartbeat at 9 weeks this past Tuesday. I'm going back in August 3rd so she can check again and she said if we can't hear it then she'll send me for an ultrasound because at that point I will be 12 or almost 13 weeks. I'm confused though because it sounds like most on here posted about seeing the heartbeat on an ultrasound and friends of mine IRL said the same. My doc originally had no intention of doing an ultrasound until the A/S around 20 weeks and it was the same with my last 2. I feel like a fool because I can't remember when I heard their heartbeats, but I dont think it was until later. I don't know, maybe I should grow a set and make a separate post about it for some reassurance or similar experiences. My doctor wasn't concerned at all and said everything will be fine which I appreciated, but thought was kind of bold of her to say because how can she really know that? What do you think?

chickie820 · July 2016

mjdenton, I completely understand your anxiety. Baby #1 has moderate CP after surviving a stroke at birth. We are now pregnant with #2, and even though we've completed all testing and are taking all precautions to make sure baby #2 doesn't have the same complications, I'm still a nervous wreck and completely convinced something is going to go wrong.

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