Preparing for a Special Needs baby?

[laird6372]

 Hi ladies. I had an ultrasound on the 21st. I got a call back saying that they found an issue with the babies skull fusing in the wrong areas (and fusing early). I believe the doctor said it was called Dilochicephaly (I will be double checking on that-I got the call on Thursday). They also said that baby has a large brain and neck flap, indicating possible Downs. I go back in the morning for a follow-up appointment to get a definitive about the Downs. I was wondering what I can do to prepare now for a special needs baby? I am 23 weeks 3 days today, so I have a little time to prepare. I just want to make sure that I prepare as much as possible before hand, because I know it will be a lot of adjusting (especially with the two that we have full time only being 2.5 and 1.5 when baby is born).

[jls1108]

Congrads on the new baby! Sorry you are having to go through this right now.  First of all the best way to prepare is to take care of yourself. You will go through so many emotions from sadness and grief to anger and fustration. You will blame yourself and wonder if you could have done something different. I believe all moms of special needs kids have gone through some of this. You need to know you are not alone and you will get through this. I didn't have time to prepare for my son because I didn't know he was a special needs child until about a week after he was born. Some of the things I had to do immediately were find specialists like genetics, neurology, cardiology, pt, ot, etc. Then I had to contact our county for info on Early Intervention services. I would suggest doing that as soon after the baby is born because depending on where you live there may be a wait list for services. Then I would suggest contacting you r local Social Security office to find out if you qualify for SSI based on you childs disabilities and your family income. It will be a lot to take in at first but after a while you adjust and this become part of normal life. You will learn that you have to rely on others for help and you just can't do everything for everone all the time. If you ever need to vent or talk send me a message I would be happy to listen!

[kalista]

Hi, there.  Congratulations on your pregnancy!  I'm the mom of a 2-year-old, Nathan, who has Down Syndrome.  BTW there are Down Syndrome groups on Cafemom too.

As far as preparing, at first this baby will be much like any other if he/she has Down Syndrome, but might have a weaker suck, harder time breastfeeding.  Over time, you begin to notice a baby with Down Syndrome develops more slowly than other kids.  After the baby is born, you can get set up with early intervention services and they can help you to best help your child.  Different kids with DS have different strengths and challenges.  Other kids younger than my son are walking proficiently, whereas he is on the cusp of taking those first steps.  Nathan's real strength is his speech, though.  He has many words and remembers books and songs very well.  Down Syndrome is a cluster of symptoms, and not everybody has all the symptoms, or has them all equally.  If your baby has this condition, his or her development will unfold on its own trajectory.

I really liked Jennifer Graff Groneberg's book "Roadmap to Holland" about her first 2 years with her preemie twins, one of whom has Down Syndrome.  My son was also premature and although I cried a lot reading that book, especially the beginning, I really related to it.

I'd be happy to share more of my experiences with you.  Send me a message, ask any questions.  He's my only (so far) but I do know other moms who have other kids as well.  Big siblings are big motivators to do things like crawl, walk, eat table foods, etc!

Here's a pic of Nathan in his Halloween costume:

And walking wiht me in the Step Up for Down Syndrome walk

[laird6372]

Thanks ladies.. I guess there isn't much to do before baby gets here..I didn't know what, if anything, needed to be done to prepare. I just wanted to make sure I did whatever I needed to to help make things easier. I guess it was just me wanting to stay preoccupied instead of worrying about baby girl.

I went in for the follow-up ultrasound yesterday (it's Tuesday here). They said there is still a good possibility of downs, but that she may not have Dilochicephaly, but they couldn't dismiss it for sure (I guess the way she was laying at each u/s could affect the measurements)... So I have to go back on Dec 17 for another u/s. I also have to schedule a fetal echo to check her heart. 

[RaggedyAnne]

Congratulations , Sorry to hear your going through this pain. There are groups for Down Syndrome.  

[tbahn911]

Both my friend and I were told that our babies had a possibility of having downs according to the skin on the neck.  I took a blood test to determine that, but my friend never did.  Neither of our babies have downs.  Her child was perfectly normal!  My child is special needs due to a rare chromosomal disorder that is not detected before birth.  So my daughters condition had nothing to do with them thinking that she had downs.  There's still hope!  And I promise you, no matter what happens, you will love that baby very much!  My daughter is only 9 months and there's still issues that I deal with her being special needs, but she is the greatest joy in my life, next to my husband.  The best advice that I have if there are developmental delays is to not get update emails about what your babies should have accomplished by now.  They used to get me upset because my baby was no where near what they are talking about.  And be careful when picking out baby books for the same reason.  But I see that you already have kids, so that might not be as much of a concern.  Olivia is my first, so I was excited, at first, to get all of the emails and books.