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!

Wisdom

Some wisdom I have acquired over my 20’s and into my 30’s (I’m 31 right now). Some funny, some serious, but all true…in my opinion of course!

-People don’t care if they hurt your feelings and a lot of people are just very selfish. Period.

-Marriages are not truly perfect and there’s a reason for that, there’s always room for improvement!

-You don’t have to pay full price for very much in this world- couponing is the best!

- Electronics are wonderful. Let the blackberries, ipods and laptops be your friend and welcome them with open arms.

-It is far more important to have a few good friends, rather than a ton of acquaintances.

-You can teach yourself how to cook. You thought you never learned how because your mom didn't cook and instead would say "it's dinner time" and you'd run get your coat and head to the car...but as you got older, you realized it was because she was tired of cooking 4 different meals for her picky family every night. It wasn't because she couldn't cook. In fact, she's a great cook. But you still had to learn on your own as a result of everyone's pickiness.


-You have to be your child’s doctor most of the time and diagnose them yourself.

-Everyone has their own set of problems and their own way of dealing with them. No one has a perfect life, even if they say they do.

-The weather really does affect your mood.

-You can never take enough pictures, even if your family complains otherwise.

-Worrying is nothing but a wrinkle maker!

-Sunbathing can help you look good temporarily, but it can do much worse damage in the long run.

-Family is truly the most important thing. It is heartbreaking to see turmoil in any family.

-Car repair shops and car dealerships will always try to take you to the cleaners and drain your wallet.

-Trying to sell a house is not fun.

-Moms are amazing. From having one to being one…they/we do it all. My mom could never be replaced!

-You can survive sitting through 2-3 baseball games in one day, in 100 degree heat, and your child can survive playing in them. You will be very disgusting afterwards though.

-God really does promise not to give us more than we can handle, but he does say He will carry us through when we feel too weak to handle it.

-Leftovers and casseroles aren’t nearly as bad as they seemed to be when I was a child.

-You should always tip at least 20% to avoid embarrassment.

-It is better to ask for help when needed than to let yourself drown.

-Water w/ lime is delicious! So much better than water w/ lemon.

-No one cares enough about the future of children w/ special needs and no one knows them better than their parents. We are their everything. It’s sad, but true and sometimes it is a very lonely place.

-There are some AMAZING doctors out there for our children, specifically my daughter’s cardiologist, eye doctor and endocrinologist. Amazing… and that says a lot because my standards are through the roof.

-It is sad, but true, that I get more excited when its triple coupons or super doubles than most anything else in my life.

-Writing is so therapeutic.

-Your child truly won’t die if he doesn’t have a cell phone at age 12.

-You can order off the kids menu at a lot of places, if you just ask!

-Birthdays definitely aren’t as exciting the older you get, you’re just more thankful to have made it through another year.

-Shoes really do make a woman feel better about herself.

-There is most definitely a difference in “street smart” and “book smart”. It is rare to have both.

-There is such a thing as TV addiction and taking on the burdens of those in reality TV. I lost sleep last week after Jake Harris (on Deadliest Catch) told his dad he was a drug addict. I’m still upset about this. I know… it is so ridiculous. I felt like he was admitting it to me and I had known him all my life. I was so sad. I probably inherited that from my mom, who was so upset when John Ritter, Billy Mays and Steve Irwin died, that she walked around for weeks in mourning for each one. You would have thought they were all her brothers. She still can’t watch Clifford. Thank goodness Brett Michaels recovered, because she was in a tailspin about that one! She even wants me to make her a Poison cd. Gross!

-Speaking of Poison, the 80’s were definitely the worst decade for music!!!

-The destiny of coming “full circle” is unavoidable and inevitable. Your children will drive you crazy the way you drove your parents crazy. On the flip side, when you are an adult, your mother will drive you crazy the way she drove her mother crazy too. And you will laugh about it. And you’re mom will enjoy telling you that you are getting what you deserve. It’s all a ripple effect and some really cynical punishment.

-You may discover new or untapped things for yourself when you are older that you really enjoy…like blogging, going for a walk or reading…all the things that may have sounded so “old” and “boring” in your earlier years.

-It is possible to grow up very quickly. I know this for a fact, which is why I seem to think I have all this wisdom at 31. Haha.

-Your children aren’t perfect, even though you may think they are. Recognize their faults and help them along to work on them.

-Your children can survive catastrophes as babies/children, such as:
1. Falling off the kitchen table in the bouncy seat when brother walks by and accidentally knocks you off (it really was an accident- he cried more than she did!)
2. Brother dragging you down the stairs in your exersaucer because you are crying for mommy, who is outside checking the mail, and comes back inside the house to find you sitting upside down in the exersaucer, one floor down from where she left you. And she (mommy) is very confused and it takes her a minute to figure out what on earth has happened.
3. Sailing down a flight of hardwood stairs because a dog has scared you to death and you decide to be Supergirl and try to fly, literally.
4. Dislocating your own arm from hanging on a fence in the dugout of a baseball game, going to the ER to have it popped back in, and coming back to finish the game by hitting a double.

-You draw an unbelievable amount of inner strength from watching the bravery of your child who has had 5 surgeries and more doctors’ visits in 7 years than you have had in your entire lifetime. And enters every single visit with an infectious smile on her face.

-Despite the fact that your 12 year old can’t seem to find matching socks, keep his room clean or manage to Not leave sweatshirts, lunchboxes and homework at school…he can still get all A’s and B’s his first year of middle school! Go Drew!

-Men don’t listen or communicate. There is some sort of wiring malfunction in their ears and mouth. If you know one who does, he is probably gay.

-It is never too late to start your bucket list. Why not enjoy the things you want to do throughout your entire life, instead of when you are too old to fully enjoy most things on your list? I have 4 things on mine so far: go to Hawaii and Ireland (not in the same trip), take ballroom dance lessons (find a suitable partner) and start a garden. Oh my goodness, I’m not 31, I’m 50 years old. Ahhhhh!

-Never say never.

Can’t wait to add to this list in my 40’s! Want to share your wisdom? :)

Perspective

I just had to share this. Some people could care less about what I'm about to say, but I find it very interesting. There is a point to this, so just bear with me.

Yesterday I made my grocery run (last day of the weekly sales). I hit up Food Lion, Harris Teeter and Lowes to take advantage of some great sales. Total, I spent $33.03 (which is way more than I normally spend in a week, but there were some good "stock up" items, so I splurged a little. $33.03.

For that amount here are the items I bought:

-5 packs of split chicken breast
-1 pork tenderloin (4 lbs)
-1 box of Lipton tea bags
-1 bunch of romaine lettuce
-1 cucumber
- 1.25 lbs of deli turkey
-1.59 lbs red seedless grapes
-3 tomatoes
-2 large cans Van Camps beans
-7 boxes of Orville Redenbacher popcorn
-1 Suave shampoo (large bottle)
-4 jars of Skippy peanut butter
-2 bags of Lays chips
-1- carton of orange juice
-2 bags of Flipz pretzels
-1 loaf Natures Own bread
-4 containers of Daisy sour cream

Oh and super score...at Lowes, there were restaurant coupons printed on the back of my receipt!! Since I bought the majority of the food there, the receipt was good and long :). So, I received 3 free appetizer coupons to Outback (yum) and 3 free chips and salsa coupons for Chili's. I'm going to assume that these 6 coupons alone would equate to around $33, because it makes me happy to think that. :) Also, at Harris Teeter, I was greeted at the entrance by a lovely employee giving out prescription cards for the pharmacy. For every new or transferred prescription you get there from now until August 31st, they will load $20 on your vic card...good up to 10 prescriptions or $200!! Yay! I have 3 to fill right now. These super scores were a huge plus in addition to everything else I got! I was one happy girl.

Now, I didn't list all these items so you could assume I'm sharing great deals, although you know I love to do that! Actually, I got $111.48 in groceries for $33.03, which is about a 70% savings (which isn't my average, but again, I did get some good stuff).

I listed these items to help create a visual for this....

Last night, Jon and I went to Chili's for dinner (yes, just the two of us....first time at dinner without our kids in months, however, we talked about the kids the entire time..isn't that always ironic?). Jon got chicken tenders w/ a diet coke and I got a cheeseburger w/ sweet tea (don't judge us!It was just that kind of day for me :). Our bill, including the tip was $27.00. $27.00. Okay, I'll accept that since it's the average price for a meal like that "these days" (because I'm so old and have been around so long..haha).

But.....drumroll please...here comes the perspective....

I got in the car and realized that we had just spent a few dollars short of what I spent at the store that same afternoon for all those groceries. The meat alone will provide at least 7-8 meals for us, plus leftovers. And all that lunch food I got (salad fixings and deli meat). Wow. I mean wow.

Anyone who knows me, knows that we enjoy going out to eat every now and then
(okay, a little too much at times). Who doesn't? Especially when I do all the cooking! If it were up to Jon, we would eat cereal or pb&j every night. Yuck. Although that might help me lose weight, I don't want that every night! However, this has proven to be a big downfall of mine. I coupon like crazy, get tons of good deals, unload the groceries, stuffing every nook and cranny in my kitchen... and then my brain is too tired to think and cook, so we go out. It's a sick, endless cycle (lol). This happens maybe once a week.

I think it helped having these two events happen in one day to gain some perspective on how much I really save couponing. A few weeks ago, I really committed to being better about using the food already within my house to cook more and more. I am sticking to that pretty well so far. That is not to say we still won't go out to eat about once a week, because there is certainly nothing wrong with that. What happened yesterday was very eye opening to me. I already have several meals planned.

Now, who has a good recipe to share using split chicken breast??? :)

What Would You Do?

1. -Would you switch your kids from track 4 to track 3, only allowing them a one week summer break and taking them off the track two of their cousins are on? You would be doing this because a really great teacher with a big background in special education would become your daughter’s teacher next year, for her first year at mainstreaming. However, you would be dealing with your 12 year old son only getting a one week break before starting a new school year. That one week break will be spent in Cooperstown.

2. -Would you take your daughter and go to the beach with your parents this weekend and miss out on your son’s baseball tournament? You would be doing this because it is going to be 93° here and you don’t have enough babysitters to help watch your daughter so you could go to the games anyway and suffer in the heat alone, without having to take her. You feel very torn though…

3. -Would you ever get tired and frustrated that your daughter waited on a waiting list for CAP services for almost 7 years and now that you have it, there isn’t enough “good staff” to fill your respite needs? You would have been waiting for your ship to sail in with some much needed help for quite a long time. You would have now been teased by this since you are ready to pull your hair out finding someone good to help care for your child with special needs because you have such a high standard for her care and the staff is so low quality.

4. –Would you start telling people exactly how you feel so they could know how their actions and what they say affect you? This would be a fairly big change for yourself because you care so much about how other’s feel, that sometimes you just let people walk all over you instead, simply because it’s easier.

5.. -Would you feel like you need to cut something out of the schedule for your family between two baseball teams with practice 3-4 nights a week, piano lessons once a week, speech therapy two times a week, developmental therapy two days a week, basketball one night a week, church softball once a week, tutoring for your daughter two days a week, carpooling for a friend one day a week, teaching coupon classes, blogging, work, school, church etc? Exactly what would you cut out? I can’t seem to justify cutting any of them. What if God would just add 4 more hours into our days? :)

6. -Would you make the time to schedule yourself for a dental cleaning, a dermatology appointment, an eye doctor appointment and a physical because you needed all of those things completed….but you don’t have the time to take off work to get it done. And see above, when else would you do it?

7. -Would you forget #’s 1-6 to focus on the more important things like quality family time, feeding your spiritual life, re-committing to raising your kids more diligently in the Lord, and being more active in church, once you commit to the one you want to be at? Let’s be honest, this is where it all starts. This is your foundation for all of the above.

The Christian in me wants to strongly focus on #7 but the human in me also needs to focus on #’s 1-6. It’s about perspective and finding the right balance. I know all moms must feel this way from time to time right??? Tell me I am not alone.

What would you do?

Beach and Other Stuff

I hope everyone had a wonderful 3 day weekend! We headed to Morehead City with my parents, Jill and Jacob. We had a wonderful time. The weather was great! It was sad to come back, but we will definitely be looking forward to our next time going. These pictures are taken from my phone, but I have many more from my actual camera that I will load later.

Things have been busy lately with the school year ending and sports wrapping up/starting.

Drew hit 3 homeruns in his regular season games this year. He is soooo excited! He is trying to beat Jon’s record, which was 7 homeruns hit when he was 12 years old (same age as Drew). I enjoy watching them compete with one another...it’s pretty funny! Drew’s travel season has just begun. They will be competing in several tournaments leading up to our big trip to Cooperstown July 4th week. How exciting!

Emma has had a tutor working with her for about 6 weeks now. It is going great. The hope is that this will help keep her on track for her mainstreaming next year (which actually begins in 8 weeks since she is year round). She is a busy girl between tutor sessions, piano lessons and speech therapy.

We still have end of season parties, field trips, EOG’s, regular season tournaments and much more to wrap up the school year. Stay tuned!