Playgroup

It’s no secret to most mothers of children with special needs that our children aren’t invited and included in many “typical” activities with “typical” children that often. This has been one of the most difficult obstacles for me as Emma’s mom and continues to become harder and harder the older she gets. Oh how I long for the day when the phone might ring and it’ll be a friend inviting Emma over for a sleepover, a birthday party or just to play for a couple of hours, for no reason. Yes, these are the little things that mean so much to us in our world, that most people take for granted. I have never received such a phone call to this day and my daughter is almost 7 ½ years old. It’s a common, unfortunate bond that we moms share. In my opinion, it is shameful that these preconceptions begin at such a young age about our children. Emma is a child who loves to go, go, go and see people and do things as often as possible. It crushes my heart when I am constantly telling her no. She just wants to be around those that she loves so much everyday! You see, every little child needs friends. Think back to when you were little. Could you imagine sitting in the house all the time and never going to a friend’s house or birthday party? That makes for a lonely world, especially when your world is already limited to a certain extent because of a disability. It is my job as her mother to give her the best life possible, filled with all the things typical children have. This concept was very heavy on my heart.

After many conversations at various Triangle Down Syndrome Network functions about getting our girls together, my wheels started turning. I thought, here is a group of girls who just want to be loved and accepted and have as much fun as possible, just being little girls. Other people aren’t inviting them places, but I want to invite them!!! Why can’t they do that together since they already have a common bond? Let’s form our own group! So, last fall marked the beginning of our playgroup within the Triangle Down Syndrome Network for girls ages 5-8 with Down syndrome. I believe we have about 13 girls in the group, although most get together’s average 6-9 of them. This reminds me, we need to come up with a cute name for our group. Hmmm, any suggestions? It started as a simple idea and then other playgroups within TDSN were formed for almost every age group, both boys and girls! That makes me very happy. I hope all the other groups are having as much success as our age group is.

We have enjoyed several play dates including pumpkin decorating, a Christmas party, house play dates, bowling, birthday parties and our latest venture of pottery painting! The girls are starting to form relationships and that was my heart’s desire all along. I am excited about the future of our girl’s growing up together and hopefully remaining good friends for a long time. The mom’s have gained so much knowledge from swapping experiences. We are even branching out and leaving the kids at home for a mom’s dinner next week!

I wanted to share a few pictures from our pottery fun (thanks Candace :). I was quietly freaking out because I brought my camera and the battery was too low for use. Candace to the rescue!).



Working hard on the pottery pieces they picked out!



Big brother Drew came along for the ride and enjoyed painting a Colts football helmet.



Attempt #1 to get a good picture. I love the personality in this photo, including my daughter who doesn't want to hold a hand!



We miss our friends who could not join us this day!

I am so thankful for Emma to have a group of girl's to play with. How this group came to be is a good reminder for all of us that you never know how the smallest things can make a difference in one's life.

Now off to brainstorm some cool names for our group...

The Struggle

I believe every mother faces the struggle of whether or not she is a good mom at some point in her life. We tend to beat ourselves up about it, or at least I do. Everything I learned as a mother with Drew, all went out the window when Emma was born. I really feel like I have been a “freshman” at motherhood, two different times since their needs were so different. I am continuing to grow my guidance for Emma and have many more years to do so, Lord willing.

However, lately I’ve been asking myself:

-Have I spent enough time with my children?

-Have I read enough to my children?

-Have I made my children feel secure and loved?

-Have a done enough to raise my children in their Christian walk?

-Did I discipline appropriately or did I yell too much?

-What should I have done differently?

I am afraid I can not answer a definite yes to all of these because I just don’t know. I am human. All I can do is make more of an effort from this moment forward, and pray I have enough time to be able to answer a definite YES before Drew leaves for college.

Let’s face it…times are different. Everything is always moving fast forward at light speed it seems. The world never takes the time to stop. In a lot of families, both parents work these days. If you are one of the few who do not, then you are extremely blessed! I am dealing with the pull of being a working mom. Yes, I work 24 hours a week compared to full time 40 hours, but my life is a little different in that most days after school, I am running Emma to speech or tutoring instead of going home for the afternoon. I have always worked since having kids, but at the preschool I was at for 9 years, I could bring the kids with me if they were out of school that day. Not anymore and finding childcare has become almost impossible, especially when you are asking for someone to watch a child with special needs (silly, but true). Therefore, I start to question my priorities. I want to be able to take my kids to school everyday and pick them up. I want to be the room mother and attend all the field trips. I want to spend as much time with them as possible. It breaks my heart to miss anything because that is time I can not get back. It is such a struggle to find the right balance with everything life throws at us. I hope I am doing enough. I am their one and only mother. I hope they both know how loved they are and that I would do anything for them. I hope they understand that when I can’t be at every single thing, it isn’t because I don’t want to be…it is because of life’s circumstances that I can’t be.

With doubt comes redirection and refocus. I enjoy taking a step back from time to time and see what needs to be done differently. For my family, my short term goals are:

-more family time (all 4 of us)

-more one on one time with Drew (so much of his life has had to be about his sister)

-father/daughter dates for Jon and Emma

-devotions (family and parent devotions)

-small family trips

-lots of prayer!

-as much involvement as possible with both of their schools

-more quality time talking and playing

In my opinion nothing else will matter 10 years from now. Not how much money we made
(well, I guess that does help somewhat :), what we had for dinner that night or how clean my house was….the quality time I spent with my children will be what matters most to me and hopefully to them. Yes, I still have to keep up with all the daily chores and errands and work, but the world won’t crumble if they all aren’t accomplished in one day (although my pride might). This is something I have to remind myself of daily.

I plan to hold myself accountable. This week has been a good one so far. I have cooked every night, Jon and I took Drew out one night to spend time with him, I stopped in the middle of laundry to kick a soccer ball around with Drew simply because he invited me to. Sometimes it’s just the small things that matter the most. I pray these “struggles” I have will become “achievements” one day and I will be able to say I gave it my all and did my best. Just another example of why humans aren’t perfect…

What are some of your struggles?

Update

Things have been crazy at our house! When are they not, but really, it has been wild! Though I have many ideas and thoughts for posts, I'm just simply going to let this one be an update post.

We went to Cooperstown, NY for 9 days for Drew to play in a week long tournament. A longer post with pictures coming soon. Good time, but very glad to be back.

Drew started 7th grade yesterday. Emma starts tomorrow and it will be her first time mainstreamed, so please pray! My kids switched from track 4 to track 3 based on a teacher at Durant who has a wonderful reputation and 12 years experience with children with special needs. We made a family decision to switch tracks so that Emma can have the best opportunity possible at mainstreaming with a teacher who will hopefully understand her. I have to admit, I was so nervous of what Drew's response would be when we presented the idea to him (informing him he would only have a one week summer break to start with). He pleasantly surprised me by stopping me from listing the reasons and said "Mom, you don't need to tell me all the reasons. If it is what's best for Emma, I'll do it." I was immediately trying to hold back my tears of joy for Drew showing me the sweet, sensitive, compassionate child he *can* be..when he chooses to show that side. :) I've always knows he was a big part of the reason God placed Emma into our family. So track 3 begins...and we hope it comes with wonderful opportunities for both Drew and Emma.

We recently found out that Emma may have Celiac's disease. For those who may not know, here's a brief explanation:
When people with CD eat foods that contain gluten, it creates an immune-mediated toxic reaction that causes damage to the small intestine and does not allow food to be properly absorbed. Even small amounts of gluten in foods can affect those with CD and cause health problems. Damage can occur to the small bowel even when there are no symptoms present.
The only cure at this time is to eat gluten free foods. For those who knows us, this appears to be an impossibility for Emma due to her lifelong pickiness. She tested positive for the lab but requires further testing. Sometime at the end of this month, she will have an endoscopy with small intestinal biopsies to confirm the diagnosis. Sounds crummy...because it is, but Emma is a trooper and she always perseveres. This time will be no different.

I really hope to catch up on some more blogging and pictures soon! Until then, happy Tuesday!