I jumped right in and started researching as much as I could so I could be as prepared as I could. Now that he is here I feel like I could have been even more prepared had I known some things. If you are preparing for the arrival of your little one with Down Syndrome I hope you find this helpful.
1. Have as much family time as you can, because when that little bundle of joy arrives you will be so busy!
2. Get involved in your local Down syndrome community. Go meet other families and talk to people who have Down syndrome. Specifically someone who is a teenager or adult. I really wish we had done this.
3. Watch the show "Born This Way" on A&E. I didn't even know about this show until after Blake was born, but it would have helped me with the processing so much if I had been able to watch it while pregnant.
4. Find out what your options are for Physical Therapy, Occupational Therapy and Speech Therapy. Reach out to your state Early Intervention Program and get that process started because it can take a while. Find out what your insurance covers. I believe it is so important to start therapies as soon as possible even if your baby is meeting milestones because a therapist can tell as soon as they start to get delayed and can show what you can do to help you child meet the milestones that they are missing.
5. Tour the NICU that your baby would go to if needed. Even if there are no medical issues that you are aware of, tour anyways, because you never know what could happen. This isn't to scare you, but a lot of babies go to the NICU for respiratory help, low blood sugar and feeding problems. Some don't go at all, but it is better to be prepared. Some babies are premature which would require a NICU stay.
6. Join the Down Syndrome Diagnosis Network Facebook groups (DSDN). These women (they also have dad group) are amazing. You will need a ton of support on this journey and having women by your side going through the same thing at the same time is invaluable. Also being a part of the main group and being able to ask advice from women who have already been in your shoes is amazing.
7. If you are wanting to breastfeed, find an IBCLC now that is familiar with low tone babies. This will be invaluable. Also find a private speech therapist that is familiar with breastfeeding. See both of these people as soon as possible after baby's birth. If you are in the NICU and baby is able to have oral feeds I high suggest having them come there if possible. There is a DSDN group for pumping and breastfeeding as well. I am convinced that had I done this, our breastfeeding journey would have been very different.
8. If you are into reading books for research these are good options.
- Supporting Positive Behavior in Children and Teens with Down Syndrome: The Respond but Don't React Method
- Early Communication Skills for Children with Down Syndrome
- Gross Motor Skills for Children with Down Syndrome
- Fine Motor Skills for Children with Down Syndrome
9. If you are mostly into researching via the internet I have some good ones listed here.
10. Have people set up and ready to help you once baby comes. Especially if you are expecting a NICU stay. Even if you think you won't need help because you've done the baby thing before. It is so different adding child with Down syndrome, even with no medical issues they come with a lot of extra doctor appointments.
10. Read the book Bloom, it is amazing and will validate everything your are feeling.
11. Find a car seat with a lot of support for the lower tone. Something with head wings. We actually just replaced Blake's seat because I was over having to add extra support.
12. Get maternity pictures done because even though you may not feel like celebrating you will regret it if you don't.
10. Have people set up and ready to help you once baby comes. Especially if you are expecting a NICU stay. Even if you think you won't need help because you've done the baby thing before. It is so different adding child with Down syndrome, even with no medical issues they come with a lot of extra doctor appointments.
10. Read the book Bloom, it is amazing and will validate everything your are feeling.
11. Find a car seat with a lot of support for the lower tone. Something with head wings. We actually just replaced Blake's seat because I was over having to add extra support.
12. Get maternity pictures done because even though you may not feel like celebrating you will regret it if you don't.
Lastly, enjoy your pregnancy because before you know it you will be missing those little kicks. At least I did.
Here is Blake's Birth Story and his first month of life which was in the NICU.
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