Monday, October 31, 2011

Wrapping it Up

Participating in the 31 for 21 challenge has been so awesome! I've started reading several new blogs and had a chance to write about some of the things I've been processing for the last five years. I probably won't write every day indefinitely, but I plan to keep up regular posting.

I mentioned at the beginning of this month that one of the things I'd like to accomplish through this blog is to reach out to parents that have learned that their child - born or unborn - has Down syndrome. I felt really alone during that time in my life, and I didn't find many resources that made me laugh or feel was a lot of doom and gloom. In the event that someone finds this blog in a quest for information about their child, here's what I'd like them to know.

Grieving for the loss of the child you thought you were having is not a betrayal. It took me a long time to stop feeling guilty about being so sad after I was told Pacey had Down syndrome. I'd love to say that I was sad for HIM, for the struggles that I perceived he would endure, but really I was sad for me. Sad because I wasn't getting the experience I thought I'd have. Once I could separate the feelings of loss about the nameless, faceless "normal" baby I thought I would have from the feelings of love I had for Pacey, the whole process of acceptance became much easier.

People generally mean well and want to say supportive things. You'll probably hear a lot of platitudes that don't help. At all. I didn't want to hear that "special babies are only given to special people" or that God had a plan or that you are never given more than you can handle. In many ways people will take their cues from you as to how to talk about your baby. You should feel free to be honest with people, and try to acknowledge that saying just the right thing doesn't always come naturally.

Remember that your baby is just a baby. Barring any health issues that need to be addressed right away, you will still have a snuggly little baby that needs to be held and loved and...well, not much else that's different from any baby. Your baby may have a hard time with breastfeeding, or he or she may not. Just like any other baby. It helped me connect with my baby to look for and appreciate the things I could see he inherited from his dad and I.

Having a child with special needs doesn't make you superhuman. I really did hate people saying things like "I really admire you, I could never do that." I felt a lot of bitterness in the early days and to hear people say that I was somehow better equipped than anyone else was just irritating. I didn't expect it, but he was my baby. I loved him and cared for him in the ways he needed it, just like any parent would do for their child. I get frustrated with him, I don't have unending patience and I don't automatically know how to talk to/interact with other children or adults with special needs. I have personal insights that help, but I'm still an imperfect human being.

Try not to look too far into the future. One of the things I found scariest in the early days was the thought of caring for An Adult with Special Needs. The thing I failed to realize though (probably more so because it was my first child) is that it wouldn't BE just some adult with special needs, it would be my son, the son I'd known since the day he was born. I still feel overwhelmed sometimes with the responsibility of advocating for the things Pacey needs to be successful, but the more he grows and the more I know him, the more I feel like I actually know what those things are.

You are not alone! When you are ready, there is a huge, wonderful community of people that will feel connected to you and offer you support and friendship. It may take awhile...for at least the first year I just needed to exist in my own little bubble and even now I'm not particularly active in our local chapter of the Down Syndrome Association of Minnesota. But I've made connections with other parents, some of which I've already written about, that I appreciate so, SO much. I started out just connecting with people by email, which I found much easier than approaching people face-to-face.

Therapy is great, but more is not necessarily better. We are so very fortunate to have kids in a time that there are so many great resources available (more in some areas than others of course). However, you have to make things work for your family. Pacey was my first child and I felt compelled to take advantage of every single thing that was ever offered to us. That worked, for the most part, because I had a flexible employer and no other children to care for. I remember feeling anxious because I had talked to someone whose child did hippotherapy (with horses) and due to my husband's serious allergy that just wasn't a possibility for us. Does it matter? No. I personally think therapies are wonderful tools to help our kids maximize their potential and help us learn about how we can assist them too, but it has to work with your life.

When your kid is 5, no one will care how old he/she was when they walked. There is a huge focus in the first couple of years on physical milestones...when did your child roll over, sit up, crawl, cruise, walk, etc. That was hard for me. It was frustrating to see our friends' much younger kids walking around before Pacey did. But now? He runs around in a pack of same-age kids and you'd never know that he didn't walk until he was 21 months old. It doesn't really matter anymore. I don't mean to trivialize these PROUD of milestones, whenever they happen. Just try to keep perspective on the bigger picture.

You have no idea what's coming. No idea how incredibly proud you will feel about your child's accomplishments. No idea how many "normal" things they will do and how not-so-very-different it is to raise a child with Ds. No idea how much richer your lives will be because of your chromosomally enhanced child and how lucky you will feel that he or she is yours.

No cavities! 

This kid loves football in all forms.


Mary W. said...

I've loved reading your posts this month! It was fun looking for them each day. I think Chris is right and you should write a book!

Lisa said...

Jaida, you've finished off with a bang! Really beautiful sentiments expressed here - you're making me all teary. Thanks for sharing, sister :)

Unknown said...

hi J, remember when I tried to express what I liked about this post and couldn't? I re-read it and I so appreciated the part about the grief. I cried and moped the weekend after Kyle's diagnosis -- so much so that it felt like somebody in the family had died. My mom was very sad for us too, and it felt wrong and guilt-inducing that she and I were grieving for an otherwise healthy, happy, beautiful child! I don't have people insinuating that I'm superhuman, but I do feel very guilty about having no patience. talking with you has made me feel better about it and I realize that IT'S OK. The part about therapy and the amount for each family is also really true -- the providers throw a lot at you and there's a lot that can be done, but it's ultimately up to us to figure out what we can do as a family. Thanks for making that point, and all of these points.....Carrie