The title above, that is how I feel. When I received Kamryn's diagnosis, the day after she was born, it shattered me emotionally. The first year of her life I was internally in pieces. I have come a long way from where I was. I have, for the most part, "accepted" that Kamryn has Down syndrome. I use quotes with the word acceptance because I did not take it willingly. Better than acceptance is that I no longer see her "Down syndrome." I just see my daughter. Her big, beautiful brown eyes (just like her sisters), her smile that seems to light up the room, her ever emerging personality. She is just as amazing as her sisters, just as unique and just as different. They are all so different. Down syndrome doesn't consume me like it did the first year of her life. In fact, it is a very small part of our lives. However, raising a child that has something extra, does bring something extra to parenting. IFSP is one of them. And for me it is a fat reminder that Kamryn has Down syndrome.
The IFSP (Individualized Family Service Plan), something I don't do with my other girls. Something you do when you have a child with "special needs" (I haven't decided if I like that term). You meet with your case worker and your child's therapists to review where your child is with physical and developmental milestones. Then, you develop goals that you and the therapists will work on for the next 6 months. (That is my short version of the IFSP, for my family and friends). We have Kamryn's IFSP meeting tomorrow. I am not looking forward to it. It is a reminder that things are different, that raising Kamryn is a little bit different.
The flip side. Times are so much better now than several years ago. I should appreciate what is taking place tomorrow. I do, but it still hurts. But I can take it, because she is so worth it.
One of the biggest things that remind my my little one is "different" are all of the abbreviations I know...such as IFSP...as well as the other ones that go with her diagnoses. When you start talking to people and flippantly use those abreviations and realize they have no idea what you are talking about, you start to feel that gap of difference...hope everything goes well for you at your meeting. :)
ReplyDeleteAndrea
Oh Andrea, I had to laugh a little inside when I read your post, because I was just getting ready to post on my blog about much of the same feelings! Must have been something in the west coast air last night! It's funny to me that you are undecided about the term "special needs" because I felt the same way when I started my blog...which is where my blog name came from. I like to think of our family as being special, with needs. We don't look at Jake as the one with "special needs", we believe that we are the ones that have the need to know how to help our children grow as individuals. Because that's what they are...individual! Good post girlfriend...mine is going to look very similar today! LOL! Have a great weekend!
ReplyDeleteThree months ago I wouldn't have known what IFSP meant...now I have an entire binder set up and a special section titled IFSP! Hope all goes well at your meeting!
ReplyDelete(((hugs)))
ReplyDeleteIt's a hard thing to fully be accepting and **okay** with. I hate those little reminders that pop up here and there.
We had our little reminder (IFSP) today.
Thinking of you <3
I love the picture of Kamryn! What a happy baby!! Love your post and totally relate. Good luck with the IFSP. I actually hate them (and I rarely hate things...) so have been putting it off. I have Mylie's next week and I initially told her caseworker I did not want to be there but the found out I had to be there so I told everyone that I do NOT want to hear the percentages of what Mylie is not achieving. I will gladly make goals and go over things that will help her, but I want it to be quick and easy.
ReplyDeleteIFSPs mostly depress me and I know why.... they categorize Mylie and I don't want to do that to her. Plain and simple. I don't look forward to them either, but I think you can at least be in control and let them know what you do and do not want to do.
On to more important things.... let's play soon!
{{hugs}} So glad you have come such a long way. The reminders suck, but what's great is that you allow yourself to feel it. Then you move on. :) Kamryn is amazing :)
ReplyDeleteWow look at that gorgeous smile!
ReplyDeleteNice to meet you. I added your blog today.
Hello my sweet wife. I'm proud of you for having the strength to set up a blog and share your feelings and thoughts to those that may need assistance. I admire your power and courage. Thank you for making our world(Me,You,JS,Naomi Bear,Little B and Kamaroon)a better place; the only place I want to be:) I'm in love with you
ReplyDeleteKamryn is super cute and amazing (regardless of her diagnosis!) You are blessed beyond words with a beautiful family, awesome husband (just look at what he WROTE!) and I'm so proud of how far you've come since I first met you. I, too, hate hearing "John Michael is at a 18 to 21 month level" when he's over 2... little jabs. BUT, it's only at those IFSPs that I ever think about it because I just enjoy the fact that he learns new things all the time and brings so much joy to everyone around him. There's more to life than being the most intelligent, most beautiful, most whatever... life is not a competition. At least not to me.
ReplyDeleteYou know, I'm still surprised by it sometimes and Leah is 3 1/2! I often wonder if the surprise will go away.
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