Spring Break

Spring break was here and gone before I knew it! We had no plans, except for one day, which I will tell you about. The rest just kinda . . . . . happened. This triggers the planner in me every year – it makes me wonder about summer and what will fill my son’s days for those three months. If one week is a bit too much unstructured time for him, what about the entire summer? Yikes.

Our one planned day involved having some friends come visit from out of town. We all lived in the same city years ago and we met because of . . . you guessed it, Down syndrome. Our two boys have enjoyed each other’s company a lot lately, and we have even met halfway between our towns to eat together as families. It is nice to have another mom of a teenage son to discuss similar issues with. She is a thoughtful and conscientious mom with lots of good ideas. Because of her other two teens’ activities, she stays super busy but is so devoted to her middle guy, my son’s friend. I love her. Move back, please, J!!

When they arrived, we went straight to our nearby indoor pool for the boys to enjoy some swimming. This was mutually beneficial, as we moms got to get in lots (not all) of our confidential chatter without being overheard! When they were waterlogged, they got changed and we walked to a restaurant for sustenance (and a milkshake). The boys seemed somewhat more shy while we were at the table with them. Maybe we should have set them at their own table? At any rate, it was a great day with very special friends. That was a highlight of our spring break.

Now the boys are texting each other. We are loving this typical teen behavior and glad they can keep their connection going. Now it’s their turn for confidential chatter!

Day 24 -- Got Support?

After perusing a variety of blogs regarding raising a child with special needs, I see clearly what we all have in common. If we could have one thing for certain, what do you think it would be? An extra set of hands? Someone to do the laundry? Someone to take our child to therapy or to do other errands? Surely all of the above would rank pretty high, but what I see as a most definite need is to know that we are not alone.

One thing we all need if we are walking the journey of raising a child with special needs is support. I read blogs where people have never met, but are relying heavily on each other because they know that the other "gets" it. It is vitally important to have these people in your life, and these days, you need not be in the same city to have them!

If you find yourself wishing you had more in the way of support from family (or at least a little understanding), write them an email or letter. Often family want to be of help but are not mind readers and do not know how to help. Send them to an informative website and outline what would be helpful to you and what would not. Many times, they will be relieved to know.

Reach out. Let others in. Talk to those who have kids close to your child's age and find some people who understand. You are definitely not alone.

Day 23 -- You deserve a break today

This 23rd post for 31 for 21 is to recognize the moms of kids with special needs. I know what it is to devote your all to making sure your child has everything he needs. We moms are "on" at all times, making sure the therapies get done, the food is nutritious and the toys are educational. Because our kids are often assessed and we are told where they are on a developmental scale, we are looking for everything we can to enhance that development. I know I am constantly evaluating whether an experience can help or hinder development. Like even now, I wish my son's only TV watching consisted of PBS or the History Channel. (Did you know that one can actually lose brain cells while watching tv? Or that sleeping actually burns more calories than watching tv? I know. I hate tv.)

But, on occasion, we have to give ourselves the day off. We can be so vigilant about making it all count for our kids that it takes its toll on us. Let the play experience be what it is, resist the urge to teach every minute, and let your son watch "The Goonies", which is exactly what mine is doing right now.

Day 16 (of 31 for 21) -- Home again, home again, get to the blog

Today has been a full day of travel and I have mixed feelings about being home! The trip has been so much fun and such a welcome break from routine. I am not ready to slip back into routine right now, but I have gotten into the routine of blogging daily-- have ya noticed? (All for Down syndrome awareness this month.) It makes me want to change things up a bit around here just for the sake of it; no ruts that way, you know. Sometimes just rearranging a little furniture will accomplish that for me. What do you do when you need to break out of routine?

Days One and Two -- 31 for 21

Okay, so I thought the button I grabbed in honor of Down syndrome was really cool. I just had no idea until this very moment that it means I am going to blog every single day for 31 days-- in honor of Down syndrome! So, I am going to get on it and give it my best shot. Some days it will be about Down syndrome and some days it won't . . . but all for the sake of acknowledging those with an extra chromosome on the 21st pair.

Today we went to a dance at the zoo. The event was called, "Gettin' Down for Down Syndrome". We saw a few faces we had not seen in awhile, but mostly lots of younger, adorable faces of kids with Down syndrome. N and some friends danced, ate burgers, rode the train, and admired the zoo animals. It was a beautiful day to be outside and to be surrounded by people who know what it is to raise a child with a certain set of challenges.

It made me remember the days when we got together as a group at least four times a year. Our old support group finally went to an "events only" format, instead of the monthly meeting style that it followed in its beginning. We had a day at the baseball field with our group enjoying the fenced area behind third base, which was perfect. We had a picnic and afternoon at the lake, a fall hayride and a Christmas party. After a few of us carried these events (you know how that is), we finally quit doing it. We tried to get leadership in key age groups, like preschool age, elementary age, etc., but no one stepped forward. I hated when we had to fold.

As the kids get older, I suppose there is less need for support and life just marches on. Your other kids have activities, and we grow apart as families. But there is something about the early days of having each other to lean on that you never forget. I am hugely thankful for the great moms that I still am in contact with and who have helped me along my path. They are among the sweetest parts of this journey.