Sunday, February 28, 2010

Ponderings on Raising Special Needs Children

I have three children with significant special needs that, frankly, keep me on my toes all the time trying to balance it all. I have even had a person or two comment that my 4th child, who is "normal," could be considered special needs in a way because she has to be nurtured/raised in the midst of all of the uniqueness of our family makeup. So what is my point in this intro?

We joined a special needs bowling league this weekend. All three of the little ones joined including the "normal one". This bowling league is for all ages and stages of kids/adults as long as they have a special issue that would make it hard for them to fit into a "normal" league. (Normal siblings are welcome as well.) On a lark, we went after a friend suggested we try this new group out. We did not plan on getting involved in a 10 week bowling league, but the kids loved it, so we did. They can't wait to go back.

While we were playing, the leader of the group was coming down the line and taking everyone's information. When she got to us, she asked, "Now which one is disabled?" You see, all of my kids "pass" for normal. They look "normal" when you look across the room. They talk fairly well, can carry on a fine conversation in everyday life, and they can walk. They have full motion of their limbs. They do not rock, drool or tremble (although two of them struggled with drooling for years). They do not need any heavy medical equipment that must be dragged behind them. They have full control of their body fluids. When I looked down the row of other kids in the league, it was obvious what most of their issues were from looking at their faces or wheelchairs. But my kids "pass for normal," or do they? 

This kindly woman meant no harm in her question. She was simply trying to figure out how we fit into her league. Reactive attachment disorder, fetal alcohol disorder, severe sensory integration disorder, damaged lungs, brain damage, poor stamina due to a bad heart -- these are not revealed physically unless one gets to know them more. She did trigger an age old pondering in me ... one I have struggled with for 19 years. Where do my "pass for normal" but really are not "normal" kids fit in? Is it best for them to spend the vast majority of their time with other "special needs" kids or should they be with "normal" kids most of the time? The positives when they are with special needs kids is that they are "safe" from ridicule, I can conduct their therapies to reinforce them without anyone even noticing, they can be more relaxed and do not need one million reminders on how to behave. However, they are often the highest functioning, sometimes get frustrated that they cannot understand another child, and are lumped in with the visibly disabled and more likely to get ridiculed from the outside world. 

On the opposite end, when they are with "normal" kids, they often fit in for awhile. They can run and jump and play. They can often have more complicated conversations without aids. But then we have a sensory issue, social issue (usually space or miss a social queue) or a cognitive issue; and the "normal" kids think they are goofy, foolish, immature, weird or stupid. They are often rejected or cast away, whether it be at church or the neighborhood playground. (One-on-one friendships tend to go better where I am friends with the parent first.) It is much harder to provide the supports that help them without unkind words from kids and adults in the normal world.

This year I have focused on joining more and more special needs groups in the hopes of finding them some lifelong friends. (Another complication ~ when you hang out in the special needs world, friends die from their special needs. Tim has lost about four playmates to death in his 19 years.) 

So where do we fit in? How do I best serve my children? Do I shelter them too much by keeping them in the special needs world, or am I keeping them from harm while they blossom and grow? Ponderings.... Ponderings....

Kind comments and reflections are welcome....

Blessings, Dawn

Thursday, February 25, 2010

A Day in the Life ~ February Edition

I had planned to record a day in the life of our homeschool each month, starting this past January. However, I missed last month. It occurred to me this morning that this month was almost gone and I best get to it. I also needed some accountability today so that we would actually get something done. When Tom Sawyer burst into our bedroom to wake me up at 6:36 am this morning, I was not at all ready to face the day. We are staying up way too late watching the Olympics!

6:36 - Tom Sawyer (7) let me know that it was time to get up. I tried to tell him that I was not a mother until 7 am, but he said I had to get dressed and be ready to be a mother at 7 am. Oh, bother!!!

7:00 to 8:00 - We all had breakfast and rotated the dishwasher. The kids did their morning chores. The kids watched a show on PBS and I got in a few minutes of blogging.

8:00 to 8:30 - We had circle time which included calendar skills, today's routine, show and tell and geography review. 

While the kids were doing their show and tell items, I discovered how dirty two of the kids' stuffed animals were. I convinced them to put the stuffed animals in the wash. 

8:30 to 9:15 - I did the girls' hair. We then took Tim (19) to his volunteer job at the nature center and came home.

9:15 to 10:30 - We got some school done. We did SOTW (Crusades), studied our Crusade map, Latin with Songschool Latin, Explode the Code, and Horizon Math.

10:30 to 11:30 - The piano man arrived to tune our piano. The kids had a choice of watching the piano man tune the piano or playing with occupational therapy (OT) things. Tom Sawyer spent all of his time with the piano man, who kindly showed him all the parts of the piano, played lovely songs for him, and listened to him practice his latest piano lesson. The piano man was very encouraging and played each of the children's favorite songs at the end. Our piano got a great workout. This is a Hamilton studio piano made by Baldwin that my Mother bought from a used piano dealer for me when I was a young teen. It was a very big expense for my single mom and has been well-loved and appreciated. Several times, we have paid $500 in order to get it professionally moved to various homes, but piano tuners say it is well worth it because it has a beautiful sound that is difficult to find in new pianos nowadays.

The girls went back and forth between the OT things and the piano.

 (playing with homemade play dough, drill and pattern, scissors work and puzzles)

11:30 to 12:00 - Free Play ~ The girls went off to play in their rooms and Tom Sawyer stayed with the piano man.

12:00 to 12:30 - Lunch time ~ hot turkey and gravy over rice with salad

12:30 to 1:00 - It was Little Red Riding Hood's computer time today (they each have an assigned day when they can spend 30 to 45 minutes on the computer). As usual, the others sat around and watched her play Starfall and PBS kids' games. I cleaned up the kitchen and made phone calls.

1:00 to 1:15 - Yikes! I have no idea what the kids were doing and I was still on the phone!

1:15 to 1:50 - Reading lessons for Little Red Riding Hood (6) and Goldilocks (9) and read out-loud time for Tom Sawyer.

1:50 to 3:00 - We left the house to pick up Tim and do errands. We went to the bank and then to redeem our coupon at our local organic health food store for free pizza fixings!!

Of course, it is important to have fresh pizza dough facials while you wait for pizza to be made.

3:00 to 3:30 - Everyone deep cleaned the kitchen.

3:30 to 4:15 - Tea time ~ We are almost done with The Railway Children. We got sidetracked with a wonderful biography about Milton Hershey, so it seems like we have been reading The Railway Children for a long time.

4:15 to 4:45 - Rest time ~ Everyone to their own rooms and I started recording our day.

4:45 to 5:45 - Made and ate dinner. Homemade organic pizza!Yummy...

5:45 to 7:15 - I took Tim to his college class and then returned home to work on this entry and watch the kids play. Dh made Robin Hood and Princess hats for the children, and they played Robin Hood until it was time to get ready for bed.

Well, that's all, folks. This was a pretty typical day around here. Typically, we would have played outside, but today's 30 degrees before calculating in the 30 mile an hour winds prohibited it. Brrrr!  Also, this was a day when Tim was not home much. He will not get home until almost 9:00 pm. However, this day, like most days, shows why I love homeschooling so much. The learning never stops, and every day holds such variety and opportunity to learn and love each other.

Blessings, Dawn


Monday, February 22, 2010

Film Cans

Thanks, Dad! We got your package.

The mad scientists in the house are very excited this morning. I think I heard the words "dry ice bomb" yelled before the sun came up -- this activity will be in the not too far off future. Then there is this one, or this one. Hmmmm! Lots of exploding going on in the future. However, there is non-exploding fun to be had, as well, sSuch as floating and sinking  and mini icebergs. The experiment possibilities go on and on.  

Some of the film cans will be saved for a weight set for our balance scale. Loads of fun to come. Well, I better go hide them and explain to the kids that these film cans are becoming an extinct commodity and must be recycled and cared for. In other words, "Don't take them out in the yard and lose them!"

Blessings, Dawn

Friday, February 19, 2010

Weekly Wrap-Up ~ And There was Sun!

From the Heart

We had a really nice week that ended with a sunny day in the high 40s. Yippie!!! I am coming to terms with Goldilocks being on a major anti-psychotic to stabilize her mood. It is helping her so much that I just need to stop worrying about the possible long-term side effects. For now, she is like a new child who I have never known before. She is easy going, calmer, asking for help, checking out directions when she doesn't understand something and friendly to all family members. She has needed only a few corrections this entire week and only had one 5 minute period of real yucky behavior. She has dealt with the death of her hermit crab, as well as the death of our beloved elderly next-door neighbor, with very appropriate emotions. I am just shocked and delighted to see such "normal" emotions and behaviors in my little girl. She is even learning with more ease. This medicine is such a blessing.

On the Homefront

The house is crying out for a "Spring Cleaning". I hope to work that into the schedule soon. It is not falling apart, but there seems to be projects and papers stacking up around the edges. Hopefully, we will get some warmer days so I can get the kids outside some and the house aired out a bit. I am feeling the need for a good de-cluttering as well.

In the Schoolroom

We had a wonderful week with schooling. Everyone was eager and willing! I love it when that happens. It was very smooth sailing right up until halfway through lessons today. The kids are still enjoying the solar system and made a mural this week.

The kids are also doing great with retaining what they are learning about the Middle Ages. I found Tom Sawyer and Goldilocks building an entire medieval town during free play. I love when their learning rolls into their play.

We only have 8 more official weeks of school to go for this year! I will be spending the weekend reviewing where we are and what is most important to finish up before our month or so break. We have fallen behind in history, but I thought we would when I saw how much there was to cover this year. I would rather go with the flow of the kids and let them really get it and be behind than to rush the learning process. It is all good.

In the Way of Parenting

Our younger dd has an inherited cowlick. The poor child has it in the same place as her paternal grandmother and then she inherited my thin hair to boot! I have tried to train the cowlick out with little success. So I am putting more effort into doing both girls' hair into pony tails, braids and twists each morning. This allows more quality time with them and hides dd's cowlick. I am a bit challenged in this department but found a great website here.

These are supposed to look like hearts on top of her head. They looked cute but I couldn't get a good picture.

Two braids meeting in the back with a fancy bow.

As a Wife

Dh and I are doing a good job of making it into our bedroom by 9:30. We are enjoying the Olympics which only the TV antenna in our bedroom picks up. The other TV doesn't get reception of the Olympics. This has meant our oldest coming and going during the "exciting" parts (snow boarding and ski jumping). I think my dh will be happy when the Olympics are over so our room is our own again. 

Family Time

We continue to like games at night. Charades is back by popular demand. Today, the kids, Grandma and I decided to enjoy the sunshine and go to the arboretum. We took a nice long nature walk.

We also visited the new exhibit, The Story of Poop! It was a little boy's dream come true! I know more about poop than was ever necessary to know, but it was very interesting. I am not sure which the kids liked better -- the scale that told them how long it would take an elephant to poop them out according to their weight or the dung beetle game where you try to roll the dung faster than your partner. Timothy thought it was all a bit too gross for him. LOL!!

Blessings, Dawn

Monday, February 15, 2010

Happy Presidents Day

I was wondering how to celebrate Presidents Day today and use my husband's pewter presidents at the same time. He has a childhood collection of all of the presidents through Ford. I decided to do a treasure hunt to find the presidents. I read the kids a strange or famous fact about each president and then the kids were given a clue based on the fact to find them. For example ~ George Washington had fake teeth and was so concerned about everyone keeping their teeth clean that he had his horses' teeth brushed every day. They found him hidden in the toothbrush drawer. 

Some other fun ones were:
Theodore Roosevelt was next to a big walking stick. He is famous for saying, "Speak softly and carry a big stick."
William Harrison died from pneumonia after standing out in the cold for over two hours giving his inauguration speech. The mitten drawer seemed like an appropriate place.
FDR was found in the loaf of bread to represent the bread and soup lines of the Great Depression. 

This turned out to be a really fun way to learn about the presidents. I think I may have started a new tradition. LOL! So, what did you all do for Presidents Day?

Blessings, Dawn

Friday, February 12, 2010


We finally got a break in the snow and were able to have our Five in a Row (FIAR) Support Group. We did Snowflake Bentley, of course!! With all the snow we are having, it was the obvious choice! The kids started out making snowflakes.

Then they moved on to making iridescent lights on ice cubes. This is really fun! All you need is a bowl, ice, salt and food coloring. Red, pink and yellow change almost immediately. This was a big hit. Iridescence is an optical phenomenon in which the color of a surface changes if it is viewed from a different angle.

Then the kids created sun prints with solar paper (which took a long time due to the lack of sun) and snowmen out of homemade glitter play dough. 

Tom Sawyer made a snow spider (lol).

After that, they ate snowflake cookies, white punch and popcorn while one of the mothers read Snowflake Bentley to all.

Guess what? Earlier in this blog, I said we got to have our FIAR Group today because there was a break in the snow. Well, as soon as the group ended and left, it started snowing again! It seems like we get snow every Friday and Tuesday recently!

Blessings, Dawn

Tuesday, February 9, 2010

Art Class

We had the pleasure of going to our local art museum today and taking a homeschool art class. I have been meaning to try this class with my little ones all school year and finally made it. There were 12 kids in our age group and the docent was excellent. She took us around the art museum to look at a large variety of paintings with the theme of lines. It was interesting to see all the different ways lines are used in art. 

After about 40 minutes of touring the museum, we moved into the art studio. The kids were given aprons and told that they were going to make prints with the theme of lines!  What fun. 

First they made lined patterns on their printing foam. The teacher told us that one could use the foam from an egg carton and get the same affect.

Next, they painted the print with printing paint.

Then, they used a roller to press down the template onto the paper.

How cool is that!  They were able to go back over and over again with different colors and make really creative prints.

The kids' finished products! From top to bottom, Tom Sawyer's, which he named Random Lights (he's the one who has never waivered from wanting to become an artist); middle one is Little Red Riding Hood's wonderful organic shapes; and the bottom was created by Goldilocks. I am so pleased with this program. They were able to use high quality art supplies, and the teacher was really nice. On the registration form, it had asked how to best teach each child. I had written about the kids' special needs and what would make it easier for them (example ~ extra paper towels for sensory boy and repeated directions for FASD girl). The teacher had obviously read the registration sheet and followed through with helping my kiddos. Very impressive! I can't wait for next month's program!

Blessings, Dawn

Saturday, February 6, 2010

Weekly Wrap-Up ~ Sleet, Hail, Freezing Rain, Oh My!

From the Heart

The weather outside has been frightful for days and we are feeling cabin fever around here. Our Five In A Row group was canceled due to every frozen thing that can fall out of the sky on Friday. I think we saw sleet, hail, snow and freezing rain all within any given hour of the day. We are having some wild weather indeed. Now, I have to try and reschedule the Five In A Row group, but the forecast looks crazy for next week as well. OY!!

On the Homefront

I got to do some stockpile shopping at our local grocery store. They had lots of dairy and nitrate-free lunchmeat on super sale (more than 50% off). It is nice to have a full fridge. I am struggling a bit with the kids' chore charts. I revamped them in January, and they do not seem to be working out as well as the previous lists. However, I wanted to train each child in a different task and get on top of maintaining bedrooms. The bedrooms are working well but the other chores need some more thought.

In the Schoolroom

We got several projects done and really got into our study of space. We kicked off our science unit on space by watching Apollo 13. The kids loved it and learned more than I thought they would from the movie. (FYI~There was a shower scene that I had forgotten about that raised some eyebrows and questions out of one little one. They don't really show anything, but you are aware that a man and woman are in the shower at the same time.) We continued by reading some library books about Apollo 13 and making moon rocks out of homemade glitter play dough. We also learned about constellations and made up some of our own. The kids really liked both projects. It was much better this week compared to having a sick teacher/mommy last week.

We also worked on lots of projects to go along with Snowflake Bentley, but I will save that for a different post. Math, language arts and reading were done in a bit more unschooling style this week. They all got done but it was more games and workbooks that the kids could do on their own.

Tom Sawyer's yearly tests results came back this week. He did very well. He came out at or above grade level in all subjects, except spelling. He was only a few months behind in spelling. Funny, his tester suggested that I make him a spelling dictionary similar to what Charlotte Mason suggests. That very thought has been on my To Do List for the last few weeks. I guess I better get to it. It is such a relief that he is doing so well.

In the Way of Parenting

Things are going well with the kids saying "thank you" and "my pleasure" to each other. I still have to prompt them lots of the time, but I am seeing improvement. Goldilocks is still holding steady. I am back to trying to balance my desires for my children with their actual abilities. Merging and molding their disabilities together can be so hard at times. I keep seeing progress and must remind myself that child training takes LOTS OF TIME.  

As a Wife

Between illness and dh's work schedule, we have fallen off the rule that we must be in our bedroom at 9:30 every night. The idea behind this theory was that we would be in the same room so that, even if he was finishing up ironing (yes, he really likes to iron!) and I was looking over the next day's lesson plans, we would be able to chat about life beyond childrearing. We both have mentioned missing this time together, so we will make sure that it is put back on track next week.

Family Time

We are working on having calmer evenings as a family together. There has been way too much boisterous hide and seek and Nerf gun wars in the house with someone getting hurt or feeling cheated. My kiddos just cannot take that much wildness, even though they crave it. Playing card games has been the most popular replacement to the noisy, out of control games. The kids all learned how to play Apples to Apples this week. The girls have to be on a team with a parent, but Tom Sawyer can hold his own with his own cards. Timothy keeps beating us since he is a walking encyclopedia. I think we played this game three nights this week for up to an hour each time.

Blessings, Dawn

Tuesday, February 2, 2010

After 19 Years

After 19 years of asking, waiting, and wondering, a soft-spoken neurologist finally gave us a missing piece to the puzzle in my son's brain. For years we have heard phrases like "Dandy Walker Cyst," "This brain is a train wreck," "Institutionalize him," "Microcephaly," "Maybe it's VCFS," "Severely brain damaged," "He won't survive and if he does he will be retarded." But no one ever told us the information that has been sitting on the MRI scans done on Timothy at the age of 19 days. Yes, folks, 19 DAYS OF AGE!! HE WILL BE 20 YEARS OLD IN APRIL. We have seen at least seven other neurologists over the years, and none of them gave us the information that was sitting right there on those scans all these years!! I don't know why. Surely they recognized the severity of the hypoxia. It's just they never told us about it. "Put him in an institution" was easier than taking the time to show us what horrible shape his brain is in. No one took the almost 2 hours to sit down and explain this "new" information to us. Not until this doctor.

Ahhh, I am ahead of myself. I will back up a bit. On our never-ending quest to find Timothy more help, we decided to try the new board-certified neurologist in town. Timothy's geneticist has unsuccessfully pursued for years the possibility that Timothy has VCFS, as he has many, many symptoms of VCFS (Velo-Cardio Facial Syndrome) but doesn't test positive for it with chromosomal tests. This geneticist wanted Tim evaluated by this new neurologist, because it was being said around the town that the neurologist was giving people answers and help that they had never received before! We gathered all of his medical records and the one set of MRI scans that were done on Timothy's brain when he was 19 days old. It is the only MRI that he has ever or will ever have, because a pacemaker was implanted soon after the first MRI. People with pacemakers cannot have MRIs. The neurologist asked us loads of questions and looked at the scans. He said everyone was complicating the waters looking for a syndrome or genetic condition. He agreed that he had microcephaly and a "significant" Dandy Walker Cyst which explains a host of Timothy's learning, emotional and medical health problems. And he may very well have VCFS. However, he said the biggest issue was that he had HYPOXIC ISCHEMIC ENCEPHALOPATHY (HIE).  Basically, these really fancy words mean a severe lack of oxygen and blood to the brain and central nervous system either during pregnancy or in some cases during the first months after birth. (It can also happen after a heart attack.) He said the scans showed a severe case, and he did not know how Timothy had survived. He had only looked at scans this bad of babies who had already died when he had been called in to make the diagnosis. Now that we know what to look for in the scans, it is shocking to compare his scans to that of a normal infant's brain. Since Tim had three heart attacks after the MRI was done and during the first few months after he was born, the neurologist said that Timothy's brain probably actually looks worse than it was in the MRI. The neurologist said his brain was "screaming out" HIE!! Also, this patient, kindly neurologist said he absolutely could not understand why Timothy didn't have very severe cerebral palsy. I explained to him about all the early childhood intervention that was started when Tim was less than 2 weeks old, and he said that maybe, just maybe, that helped. One thing is for sure, Tim is a miracle!

So all this time, it may have been just a bum pregnancy or delivery that caused a host of the problems my ds lives with now. (The Dandy Walker Cyst is something different and was not caused by the pregnancy.) I experienced a very difficult pregnancy and delivery with him. I feel no guilt, though. I did everything the doctors told me to do and never ate or drank anything wrong (not even a soda), never used nail polish or hair spray or anything I thought had chemicals in it, but it just wasn't enough. I was bedridden, laying on my left side for weeks and then hospitalized for two months to try to keep the pregnancy viable. I know that he would have had significant problems even if he had only had the Dandy Walker Cyst. Many babies born with a Dandy Walker Cyst die in infancy. I feel a renewed sense of gratitude that we were blessed with this child. Doctors have told me many times that he is a miracle and that God must have a special purpose for him. We sure are happy to have him and think he has changed the course of our family several times. He even saved his little brother's life once.

Unfortunately, the doctor did not have any great advice for us. He could not figure out how he was doing as well as he is doing. Boy, have we heard that a million times! But I guess when only a very small percentage of these kids live, there isn't much research to go on. The doctor told us to keep doing what we are doing. Stimulate, stimulate, stimulate the brain through more and more experiences. Tim cannot grow anymore brain cells, but he can grow pathways between cells for the rest of his life. So that is what we will do ... that and keep praying and thanking God for all that he has done in our son's life. We are so blessed!

Blessings, Dawn