Friday, September 16, 2011
What is Indian Summer anyway? I think it is when a few hot days come back here and there. Maybe that's what we had. But today is cool and crisp, and I think I smell cinnamon. Football captivates many minds around me and shorts are not the first item I reach for each day. (But don't be thinking I am ditching my beloved flip flops yet. They are the last remnant of summer every year!)
Mostly, I think, fall brings change. And change is exciting.
Winter is an etching, spring a watercolor, summer an oil painting and autumn a mosaic of them all. ~Stanley Horowitz
Wednesday, September 14, 2011
I am the older sister. Maybe enough said. I am responsible—too responsible. I had to be the driver of the car that arrived home at or before curfew in high school, so I was accustomed to being the nail biter. Would baby sister round up easily at the arcade to make it home in time? Being a responsible mother came naturally for me. This role is now so ingrained, it is hard to let it go.
Except for when dear younger son kicks in. I found it delightful today when he nervously pointed at the fuel light on in my car. He gestured frantically at a nearby gas station since I was on the phone. (Wow, so that’s what it feels like for someone else to worry about things!) He loves to go to church youth on Wednesday nights, so this evening he kept a vigilant eye on his watch. He ate a quick dinner, took my plate (wait!), put a few things away, changed clothes and announced he would be in the car. Right on time! Hmm, I could really get used to letting him pick up some of this “responsible” stuff. I think I am getting a little too old for it.
Saturday, September 10, 2011
Then it came out. "I hear it is supposed to be 96 next week, though." What?? "We can't seem to get away from it," she added. I normally don't pay attention to weather forecasts and just accept each day's weather as if it were my screen saver; it's just the background, you know? When people complain about the weather, I simply shrug because -- what can you do? It is what it is and we don't get a vote.
But because of our unusually brutal summer, it felt like she said, "We will have 7 more weeks of oppressive heat and we will all perish because of its intensity." Really, 96? Really? I'm paying attention to that.
Thursday, September 8, 2011
The Man is definitely set for life. He need not do one other thing. Ever. I was so flabbergasted when he wrote this all out for me and gave it to me that I was speechless. And continued to think over and over how speechless I would be to meet Donna. And how I could not think of a single photography question because I would be in the presence of her Rock Star Highness. I was so giddy.
Well, Donna met every expectation and more. I'll tell about her some later. If you want to read her at Quiet Life, you will enjoy her. If you want to read what she wrote about our visit, it's on her Tuesday, August 23rd post. Oh, one of her credentials is writing photography tutorials for Pioneer Woman!
Tuesday, September 6, 2011
Don't keep them, give them away. Everyone is dying for some. (Even more than they want that soda, chocolate, and ice cream!) This world needs each and every kind word you can spare.
Monday, August 29, 2011
She is fine. Just fine, because she happily stayed here while I accompanied my husband out of state last week and she knows this could be her. Actually, the stomach virus could be worse, doors can be fixed, and the child has only missed his court date by 4 days in another state. (Running a stop sign is not a felony, but do you really think you can ignore a ticket??)
I have missed blogging. I am newly invigorated to take more photos and there is a good reason for that! I can't wait to share that with you.
Thursday, May 5, 2011
Saturday, April 23, 2011
He knew he should not have done that, but it was pretty cute. It was quite a large bunny for one small fellow to consume at once, but he did not seem to suffer for it. He always starts with the ears and I always take a picture while he does. But not that year! And the bunnies have gotten smaller through the years -- just in case!
Wednesday, April 20, 2011
It is great to have someone of upstanding character in one's lineage. Mind you, I have plenty of unsavory examples also in my lineage, but those can be for another post! My grandmother was a woman who served and gave a lot in her life. She was adventurous and even drove three of us grandchildren on a trip to Washington D.C., Jamestown, and to see the Biltmore-- all by herself. It was important to her that we see all that and know our nation's history. She was successful in those goals and in giving her grandchildren a trip we will never forget.
So many things could paint a picture of her, but one big thing stands out in my mind. She gave parties at her home for teenagers who had special needs. Her only connection was that a good friend's daughter had an intellectual disability, and my grandmother wanted her to have a good time, like all other teens do. I knew this was an unusual act of service when I was growing up, but not until I had my own child with special needs did I realize what a huge gift she gave her friend. Our kids SO need social opportunities.
I am grateful for her example of acceptance, giving, and serving. I suppose her life is a challenge to me to pick up that baton and follow in her determined way.
Friday, April 1, 2011
What Exactly Does Self-Advocacy Mean?
It means taking the responsibility for communicating one’s needs and desires in a straightforward manner to others. It is a set of skills that includes:
§ Speaking up for yourself
§ Communicating your strengths, needs and wishes
§ Being able to listen to the opinions of others, even when their opinions differ from yours
§ Having a sense of self-respect
§ Taking responsibility for yourself
§ Knowing your rights
§ Knowing where to get help or who to go to with a question
One of the best places to start teaching your child about self-advocacy is in his or her Individualized Education Program (IEP) meetings. Including your son or daughter in the IEP meeting provides him or her with an opportunity to learn and practice important life skills. Some advantages your child may gain by being involved in the IEP process include:
§ Learning about the impact of his or her disability
§ Practicing goal setting
§ Building teamwork skills
§ Developing an ability to speak up for himself or herself
§ Participating in a process of resolving differences
§ Gaining an understanding of his or her strengths and needs
§ Learning how to ask for and accept help from others.
Even very young children can contribute to their IEP meetings. If you feel your child is too young to participate in the entire meeting, you may choose to include him or her just in the opening of the meeting. This helps your child to know the IEP team members better and to start to be more comfortable in a child to display at the meeting. You can also receive your child’s input before you attend the IEP meeting. Ask your child if there is anything he or she would like to share at the meeting or to have you share. It can also be very beneficial to ask each team member to state one positive trait or skill your child has as you begin the meeting. Be sure to include your child in this sharing of positives. After the IEP meeting, sit down with your child and explain the goals and services or answer any questions your child may have.
As your child becomes older, the ways in which he or she can participate in his or her IEP meetings greatly increases. It is important to discuss the meeting process with your child beforehand. Role-playing being in an IEP meeting with your child can be a great teaching tool and may help your child to feel less anxious about participating.
Some Questions You May Want to Discuss with Your Son or Daughter Prior to the IEP
What do you want to learn or work on this year?
What are your special concerns for the school year?
How do you learn the best?
What do you need to be successful?
What would make learning easier for you?
What do you wish your teacher and other school staff would understand about you?
Discuss with your child how to handle the situation if something negative or difficult to hear is said about him or her in the meeting. Determine at what point, if any, you would stop the meeting and have your child leave. If the meeting is likely to be too stressful or negative, have your child only attend part of it and determine the agenda ahead of time with the team. Be sure to include your child’s input on the agenda. If your child chooses not to attend a meeting, ask if he or she would be willing to share ideas or opinions in writing or on tape to provide to the team.
Get more of this good stuff here.
Monday, March 28, 2011
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!
Wednesday, March 16, 2011
- Plans are nice, but life happens.
- Interruptions happen.
- It is good to breathe deeply.
- Unexpected appointments happen.
- Some things take much longer than the time I allot for them.
- It is good to breathe deeply.
- Some people are much too precious to sacrifice because of time stressors.
- Waiting can be productive (cleaned out my purse, texted a few friends) and good for a relationship (played hangman with my son).
I was still reminding myself to breathe deeply at almost 6:00 p.m. What a weird and wacky day. I had more waiting this evening, but with a plan.
Wait! Isn't that how I started this? Plans are nice, but life happens. My plans are not my own. His ways are higher than my ways. I can rest in that.
Tuesday, March 15, 2011
We have several unique features to our house, which was built in 1970. One of them is our "coke bottle" glass surrounding the front door. Oh, boy, was that gonna be the first thing I fixed! Nearly 13 years later, it still proudly guards sentry at the front. We have a cool wet bar with avocado green countertops, which I hear are back. The wet bar also boasts a lotus type light fixture. Groovy!
I have gotten rid of the swag lamps that once hung so gracefully from my bathroom ceiling. We have floored over the previous kitchen linoleum and tiled over "genuine Mexican vinyl" in the laundry room (wish I had a picture of that!). But our entry floor still looks like . . . avocado with potato chips in it. The avocado part is my description, but a visiting kid once said, "Hey! That looks like potato chips in your floor! Is it?"
An area rug kinda covered it, but I found another recently that I LOVE and it covers a little more. I don't feel the need to be rid of the floor anymore, especially when I think of walking on potato chips.
Do you like my new rug, too?
Monday, March 14, 2011
I have enjoyed getting her stuffed chronologically filed and her bills on a schedule to be paid automatically. Dealing with several years' worth of paper has me thinking of the most efficient ways to do this, and it has me dealing with some of my own paper clutter. Photographs are my main paper issue. I have so many that I could never part with --so many in frames and oodles of albums. Space is becoming quite an issue!
I recently purchased an external hard drive and have moved over all photos from my computer. It feels great to have these backed up, but what about all of my pre-digital stuff? Looks like some serious scanning is in my future.
Tonight I was really getting down to the last of the photos and making some decisions about more albums, etc. I have even put several photos of ancestors in an album, all black and whites, names, dates of birth (if I know), and how they are related. Sweet N was right there with me, asking what he could organize. We even moved a little furniture around, placed a few things, and he got into a drawer with cords and electronics. He sorted and untangled these for awhile and did not want to quit! Later he said, "It feels good to be organized, doesn't it? It sorta makes our life easier, right?"
Oh, out of the mouths of babes. But where is that voice when I am tossing random things in a drawer and slamming it shut?Ok, just had to go and scan this one for ya! It is my paternal grandmother (standing, middle) who was the oldest of 5 girls. They posed with their mother for this shot in about 1936. I think each one looks absolutely stunning.
Tuesday, March 8, 2011
I like watching actors who have Down syndrome enjoy their craft. I came across this guy recently online (only in my dreams would it be in reality) who is an actor from Belgium.
Watching his trailers is fun! Not only does he act very well, he does it in his native French, which is so cool to watch. He is 40 years old now and, wow-- handsome!
I wanted to show you a trailer from a movie of his, but you tube is not cooperating with me today, so look him up.
Check out his credits below:
|Born||8 August 1970 (1 |
Vilvoorde, Flanders, Belgium
|Years active||1991, 1996, 2004, 2006|
|Awards||Best Actor Award (Cannes Film Festival) |
1996 The Eighth Day
Joseph Plateau Award for Best Belgian Actor
1996 The Eighth Day
Pascal Duquenne (b. 8 August 1970 in Vilvoorde, Belgium) is a Belgian actor. He shared the prize for a male role in 1996 Cannes Film Festival for his performance as Georges in the movie The Eighth Day, with Daniel Auteuil, who played Harry. He currently lives in Brussels. He has Down syndrome. In 2004 he received the very high civil distinction of Commander in the Order of the Crown (Belgium).
Monday, March 7, 2011
We had such a nice weekend, despite our weather turning chilly again. It was okay, just not the mild spring-like temps that we have been teased with lately. It was so fabulous that N got an invitation to go to a concert! Social opportunities are the best and we are just as excited as he is when they come along. Yay for friends, for getting out, for enjoying good things! We are thankful.
While at the concert, he ate everything that did not eat him first. I think his growth is slowing, but his appetite is not. While he is already taller than I am (5' 4"), this fast metabolism is not going to last forever, and what happens when he can't devour so many groceries anymore?? He has some habits in place that need to be tempered. But then . . . . so do I. (Like the 7 dark chocolate kisses that just disappeared while I have been sitting here.)
Thursday, March 3, 2011
I am thinking it is time for a thyroid tune-up for me. My start to the new year was energetic, but lately I am like a wind-up toy that is almost wound down! I could take a nap at almost any time of the day with no problem.
I have thyroid disease and have known it and been on medication for it for about 9 years. The years that I was undiagnosed were so frustrating. I felt like a really bad mother because many days (which developed into years) I could not hold my head up, much less be a fun and energetic mom. When I look back I want to cry for those lost years. But, thanks to a wreck where we were rear-ended (!), a doctor felt of my neck for whiplash and discovered the swollen thyroid.
Having a doctor to palpate the thyroid, not just go by blood work numbers is KEY. I had had so many “normal” blood workups. Medication made for a slow but steady recovery, and I have enjoyed lots of good health since. It makes me sad for the thousands who are undiagnosed, though. And sad for the years I lost.
Symptoms of hypothyroidism in adults include:
Easy fatigue, exhaustion
- Poor tolerance to cold temperatures
- Carpal tunnel syndrome (pain at the wrists and numbness of the hands)
- Poor appetite
- Weight gain
- Dry skin
- Hair loss
- Intellectual ability worsens
- Deeper, hoarse voice
- Puffiness around the eyes
- Irregular menstrual periods or lack of menstrual periods
If you or someone you know is struggling with undiagnosed “feeling bad”, don’t give up! Keep seeking the solution. Perhaps you need a different doctor or someone to go with you who will be persistent.
Stress can contribute to the destruction of the thyroid. Learn how to manage your stress and delegate. Raising a child with special needs can be stressful!
What’s your favorite stress buster?
Monday, February 28, 2011
Their reading comprehension series has questions to answer. I know someone who likes to do homework who may love these!
I also like that there are so many levels to choose from. We have ordered several paperback books that are high interest/low level. They offer many great classics, such as Robin Hood and The Trojan Horse. The science curriculum is fabulous, too, and we used that years ago. The stories are factual and interesting, without a lot of fanfare. I am thinking of getting a new one on my son’s level, just for fun, since he is very interested in science. I may just read them aloud.
I recently ordered a critical thinking workbook for N, and I will let you know how that goes. There is so much to be had here! Take a look and see what you think. I would love to work for a place like this. It combines all my loves – reading, gaining information, learning new things—all at one’s own comprehension level.
Check it out at Phoenix Learning Resources.
Thursday, February 24, 2011
So, we all 3 watched it together and I really cried. (Not the stray-tear-down-the-cheek kind of crying, either.) Whew. I am still processing and getting it back together. What a great story! What a hard one to watch, though, as parents of a child with special needs! Did you see "I am Sam"? Same thing, but I got through it, as well.
I wondered how my son was viewing it and if he saw himself in it at all. I am thinking he did not. A few minutes after it was over, he came to me and said, "You know what is on my heart? People who don't have enough to eat. I want to do something about it. I think that is what God wants me to do." Wow. The young man in the movie could not afford certain things and appeared hungry at one point, but I was surprised that that is what stirred him. I told him I would help him do something about this. (Which only started the tears again!)
He really is my inspiration.
Wednesday, February 16, 2011
I haven't seen it since, though. We have had 69 degree weather the last few days, so it is outdoors and basketball for this young man. I wish it made him happy to read alone, like it does me. But, he is a mover and a shaker and much prefers to get physical. Guess I'll have to wait for more snow.
I am feeling so strongly that I should be offering resources regarding marriage and raising kids with special needs. It is REALLY on my heart, so here goes. (It is only two days post-Valentine's so I will take the liberty . . . .)
If you had any words of wisdom to offer another set of parents regarding marriage and raising a child with special needs, what would they be? I have thought about this a lot and have only been asked a few times, so you will see that I have been saving up for you, people! No, not really, but in our case, it has gotten better marriage-wise, the farther we go. (We had been married for 7 years when our little guy came along with Down syndrome. We have celebrated 23 years together now.)
In the beginning, it would have been good just to know that we would handle the news, the grief, and the adjustment differently. Just as moms and dads handle most things with their children differently from each other (no kidding, right?). Expecting your spouse to react and deal the same as you only creates a chasm between you. However, at the time, you have no idea this is happening and feel the big “disconnect”, which is a lonely feeling. Our guys are just different from us women. And they feel so responsible for us and for putting up a good front to be strong. Looking back, it is quite sweet, but at the time it was frustrating. Communication, communication, communication!
Some resources I have recently found:
http://www.disabilityscoop.com/2009/02/02/save-my-marriage/1972/ This is a woman who is a family therapist and who has a son with Fragile X. She really gets it, and this interview with her is great. She talks about the need for support and getting stuck in grief, which is what I think happened to me years ago. She has a yearly retreat called “Healing the Mother’s Heart.”
http://www.disaboom.com/children-with-disabilities/for-better-or-worse-and-kids-with-disabilities This is a good article which highlights some good communication skills.
http://www.focusonthefamily.com/parenting/parenting_challenges/parenting_a_special_needs_child.aspx This article even offers a 1-800 number if you need to speak with a counselor. They also have an online parenting community for parents of children with special needs.
http://www.amazon.com/Married-Special-Needs-Children-Couples-Connected/dp/1890627100 I know I have referenced this one twice already! I really am enjoying it, though. It has a section on “Heartfelt conflicts : opposing views on protection, expectations, and helping your child.” We need to keep looking for what will help us get strong and stay strong as couples!