I was suprised this evening when Jack began throwing himself to the ground, kicking at the floor, yelling. He's so big now that my immediate response was not to figure out what was wrong, but to figure out a way to keep him safe while I determined what was wrong.
I racked my brain trying to recall if I had missed anything in his evening routine, and couldn't think of anything. Aside from it being 40 minutes past his usual bed time, he had the same orderly dinner, play in the back yard, shower, goof around, then we head downstairs where I read to the kids, or sing a good night song, or both, or none, but it sort of works this way and has for months and months. And he was having nothing of the going downstairs to bed part.
And there he was thrashing about on the floor. I begged him to pause for just a moment so I could query him. Offering my hands out, "Is there something that we left upstairs, yes or no?" He stopped yelling and touched my hand for yes. Then he immediately went back to yelling. Katie put her hands over her ears and escaped to my room crying because Jack's sounds of frustration or despair hurt her "on the inside" just as they do to me, I think. Now I had two upset children.
I asked Jack to give me a minute, to try to be quiet for just a moment so my brain could catch up to his and figure out what we had missed. He ran from the hall and dove into his bed for a brief pause.
"Your medicine. I forgot your medicine this morning. I'm so sorry. Of course. Let me go get it. I will be right back."
Some medicine we take to get better, others we might take to stay well. That's how I described it the other day when Katie asked why Jack takes medicine every day. It helps him stay well. He is less sad and sleeps better, and if we miss a dose, or help us all, two doses, it makes him feel miserable and unevenly keeled. He cries.
And he knew. He knew all day long that I had forgotten to give to him. It explains why he spent so much time in that corner of the kitchen, it explains why he put his hand across the counter as I tried to lead him downstairs, and it explains why, twenty seconds after I gave him the dose in the usual bite of yogurt, he went straight to his bed and put his head on the pillow, pulling his blanket around him.
I asked a good question, Jack took the time to answer me. I have a pretty good recall for events, and Jack was quiet just long enough for me to run through our day. It was mostly luck that we figured it out tonight, but I'm trying, he's trying. All of this listening and communicating, it's hard for typical people to get it right, but Jack and I, we're moving forward faster these days, getting to the answer more quickly.
It's not without stress and frustration, but as frustrated as I am sometimes with children who are up past their bed time when I still have so much to get done, I do want to figure out the 'why' behind his behavior, especially when he is filled with so much frustration. He has all these things, this whole big world, going through his head just like I do, it's just harder for us to make sense of all of it when we don't always speak the same language. It's hard work for both of us, but we're getting there.
Tips from the Autism Society of America: How to Have a Sensory-Friendly Fourth of July.
With crowds, barbecues and fireworks, the Fourth of July can be overwhelming for some individuals on the autism spectrum. Cathy Pratt, Ph.D., BCBA, of the Autism Society Panel of Professional Advisors, offers these tips on how to have an enjoyable and comfortable holiday.
1. Use social stories or visuals to prepare him/her for a party. This is best done a few days in advance so he/she will be as comfortable as possible. It also helps to prepare a list of guests' names and faces beforehand, so that he/she can become familiar with who is coming to the event.
2. Bright and loud, fireworks can be overwhelming for people with ASD. Provide him/her with a way to dampen the sound – headphones, for example. Note that not every person with ASD dislikes fireworks, but plan for the most difficult scenario.
3. A picnic or barbecue will present him/her with new sights, sounds and smells, so it may help if he/she is provided with familiar food and drink.
4. Make sure he/she has an item from home, such as a magazine or favorite toy, which can provide a distraction in stressful situations.
5. If the situation becomes too intense – during fireworks, for example – he/she may need to leave. Coordinate an escape route and make plans for possible contingencies.
6. Holding a small cookout the week before the real thing can be great practice for the Fourth.
7. Individuals with ASD can be fearless, and fire can be a hazard to them. Keep an eye on him/her in order to avoid accidents around grills, fireworks and campfires.
8. If he/she relies on sign language, typing or symbols to communicate, make sure he/she knows how to communicate about the food and events he/she may encounter.
Happy Fourth of July!
The launch of the fourth Spiderman film on July 3rd marks the perfect time to contemplate --ahem -- spiders. AKA: arachnids, derived from the Greek word meaning "get this creepy thing outta here." Just kidding; it's actually from Arachne, a mythological Greek weaver who was turned into a spider.
The alter ego of Spiderman, Peter Parker, became a superhero when he was bitten by an irradiated spider that injected radioactive chemicals into his body, giving him superhuman strength and agility, the ability to cling to most surfaces and thus run up walls, and a spider-sense that warns him of danger.
Strength and Agility: Spiderman is famed for his web-suspended swings from building to building over city streets. You can find examples of equally amazing leaps and bounds among real arachnids if you take a look at the jumping spiders. In a single leap a jumping spider can cover as much as 50 times its own length. It does so by using a powerful internal muscle that blasts fluids from the body into the legs, flinging the spider through the air (if the current holder of the world record for the long jump, Norwegian Arne Tvervaag, could make a comparable leap, he'd cover about 300 feet from a standing start; instead his record, set in 1968, is 12 feet 2 inches).
Walking Up Walls: Thanks to a stick-to-almost-anything skin, Spiderman can walk up walls. So can most spiders (if you're a tarantula, do not try this at home — you're too big and meant for burrowing). Each leg of a spider capable of climbing walls ends in a brushy covering of hair, and the end of each hair is in turn covered with microscopic organs that can take hold of small bumps in most surfaces, allowing the spider to go up walls and even across ceilings. This ability may be defeated by very smooth surfaces, such as that of a bathroom sink.
Spider Sense: Spiderman is able to sense danger lurking near, the warning signal coming as a pain in his head that varies with the intensity of the threat. Spiders can detect danger coming their way with an early-warning system called eyes. But that's not all: their most important source of information about the world and its hazards comes from highly sensitive hairs that cover the bodies of most spiders. These hairs perceive even low-level vibrations coming through whatever surface a spider is standing on. Many species also bear hairs that sense vibrations in the air, including sound.
Webs: Spiderman can fire strands of web from his wrists. Early in his career, he invented devices for doing this, but in later incarnations he developed biological adaptations that allowed him to make webs naturally. He can capture villains with the sticky stuff and use it like ropes for swinging from building to building. Real spiders produce several types of webs — some that are not sticky but serve as a superstructure for webs, some that are sticky and capture prey, some used for wrapping up prey in neat little packages (which, in some species, are given as gifts by males to females while courting; whether Spiderman has super gift-giving powers remains unrecorded). Some smaller spiders producer gossamer web, used as a sort of sail that catches the wind and can carry a spider far and wide, which probably explains in part why spiders are found almost everywhere in the world.
Spider silk comes from glands on the arachnid's posterior, with different silks produced by different types of glands. Some silks are comparable in strength to high-grade alloy steel and can stretch up to four times their relaxed length without breaking. Made basically of protein and water, the silk is extremely light weight once it dries. A single strand long enough to encircle the globe would weigh about 1 pound 2 ounces!
Still curious about the creepy-crawlers? Check out How Stuff Works.
We are rearranging rooms around as we get ready for Emma to visit for the summer and one of the boxes that are being moved is a box full of Barbie’s. As with most boxes, this one caught Carly’s eye and she quickly made her way over to do it and started pulling/throwing out the contents.
She found the Barbie’s and found a Barbie that I think was from type of Tinkerbelle like story. Basically, this Barbie had a set of wings on her back. Carly also grabbed two other Barbie’s who were just normal Barbie’s, no wings attached.
This evening, when I walked into the living room, Carly was having a very animated conversation with winged Barbie and swinging her around in the air. After swinging Barbie for a bit, Carly would bring Barbie close to her and look into Barbie’s face, perhaps expecting a response back from Barbie.
This continued on for a bit and MJ sat down next to Carly and asked her what she was doing. Carly looked over, smiled, and continued “talking” to Barbie. MJ found two other Barbie’s lying nearby. Even though these Barbie’s did not have wings, they did have the ability to sing, something that winged Barbie could not do.
MJ pushed the button on the back of one of the Barbie’s and the doll began to sing. As soon as Carly heard the music, she turned around and scooted over to MJ to see what was going on. She stared at singing Barbie with a big smile on her face, turned around to winged Barbie, said something to her, and dropped her on the floor.
From the looks of it, Miss Carly had made a decision, she was done trying to have a conversation with winged Barbie and now found a Barbie that she could not only hang out with it, but a Barbie that could sing to her as well! How could winged Barbie every compete with that?
Though winged Barbie was cast off to the side, I have a feeling that she will be back in Miss Carly’s hands soon, even though winged Barbie does not have the same abilities as sing Barbie. As Miss Carly has taught us we should include everybody because we are all more alike then different.
Well, I said this was going to be a summer where I tried to take a pause and breathe a little. But you know what? Uhm, I'm not really like that.
So instead I have scoured every local list and found camps that will make my daughter happy for most of the summer. And I have signed Jack up for two different visits to his favorite camp. I have scheduled one weekend with friends at the Lake house, and have invitations out to two other families we know well-enough to invite into our intimate life, and I am planning ten days at the lake house with the kids.
Also, I'm leaving for Mexico in the morning. That's right. I am going on a vacation with some girlfriends. My bags are packed and my purse is cleaned out, and I have books to read. I am going to read, and sleep, and laugh, and nap for four days. I'm not even staying the full week with everyone, but I know it will be enough time to relax and have some fun. Just knowing that I am only going to carry only my purse onto the plane is practically a vacation!
It was a bit of a last-minute opportunity, a combination of the host's generosity and me feeling adventurous, but it came together, and I am so excited. I'm going with some women I know from the special needs world. Two of them I have known since Jack was a tiny-tot in early intervention ten years ago. The other woman I've known for almost six years, and we met because of our boys too, and the Special Education PTA (SEPTAR.org).
I don't see these women that often (or at least outside of our PTA duties). We are busy with children and their schooling, and husbands, and jobs, and life, but I know them deeply when we meet. There is something in our friendships that make it so that we don't need to start over every time, and there are so many things that happen in my life that they just understand in such richer detail than parents with only typical children can conceptualize. These women, they are my people.
Having a child with special needs marks your life as different; different than you planned perhaps, different from other families, different from what the books tell you that parenting will be like. But there is one way it is marked differently that I am thankful for every day, and that is the character and depth of the friends I have made on this journey.
All of those parent groups, laughing about things that really aren't funny to most people, finding ways to hold each other up when illness, or desperation, or fear try to get the best of us. I have shared so many important stories with these women, and with other people I have met along the way, and I am changed by the conversations we have had. The insight we can provide each other, from personal experience or research, is invaluable, and the compassion and understanding are models for what nurturing looks like.
I am grateful for the friendships I have made and the community we have built. As lonely as it can feel sometimes, I have always known there are people who will help me figure something out, who will willingly be the emergency contact on our camp forms, or quietly be with me as I come to terms with whatever parenting failure I am trying to resolve.
It's one of the first thing I tell someone who has a child that as just been diagnosed... with anything: Find your people. It is the best thing you can do for your child, your marriage, and yourself. Finding people to lean on, and a group to care for almost always heals up some of that feeling of "other." You will need friends who understand your family. You need to know there is at least one other person who can get your kid from the bus in front of the house and shepherd him safely in to the house. Find people you trust with your challenges and your failings, people who you can count on emotionally through difficult times. Then know that the good times, the easier times, which there really are a lot more of, will be just that much better with friends who will always know how far you've all come.
It's summer time! Are you looking for child friendly activities for your children on summer break? Why not listen to music that has been written just for children?
There are several symphony pieces that have been written to stimulate the child's experience and imagination. Different instruments are used to tell the story and represent different characters. It would be perfect to listen to these on a long car ride or at home during quiet time.
These child friendly symphony pieces will keep children interested and stimulate their imaginations.
Peter and the Wolf
One child-friendly piece is “Peter and the Wolf”. “Peter and the Wolf” was written by Sergei Prokofiev. It is a children’s story told by a narrator and accompanied by an orchestra. In this piece, the story is told about a little boy named Peter who goes out with his pop gun and his animal friends to hunt the wolf who has been terrorizing the local village. Each character in the story is represented by a different instrument. You can follow the character throughout the story by listening for the sound of their instrument.
I believe children learn best while they are having fun. Your child will have such a fun time listening to this story and all the different instruments. You never know, your child might be inspired to learn the violin or flute!
Enjoy the summer!
I received one of my Father’s Day presents a bit early this year. It happened last week when we were dropping Miss Carly off at school. I normally am not a part of the drop off process as I am falling asleep as the kids are getting ready for school, the joys of working the night shift.
However, this time I was there to drop Carly off and very glad I was able to tag along.
When we got to Carly’s classroom, I handed her over to her teacher and said “Bye-Bye Carly, love you.” I say it every time I head off to work or when Carly heads off to school. Usually I get a smile in reply and sometimes she waves as well. This time, her response caught us all by surprise.
After saying my good bye, Carly started to wave and then quietly said “bye-bye.”
MJ, Carly’s teacher, and I all looked at each other and had that “did she say what I think she said” look on our faces. I think MJ asked the question first and all of us said yes, we had heard Carly say her first words “bye-bye.”
My heart swelled with pride while my eyes started to fill with tears.
My little baby girl said her first words and I was blessed to be there.
What an amazing gift!
Fingerplays are a fun, entertaining way for children to work on important skills.
My students absollutely love Mr. Wiggle and Mr. Waggle. It is funny at the same time it works on fine motor skills. Each thumb becomes a character in the story and lives inside their homes made out of the rest of the hand. The children work on moving their whole hand up and down as the characters go up and down the hills.
This fingerplay also allows children to explore different pitches. They slide their voices up and down as they tell the story of each character going up and down the hills.
It also teaches sequencing as Mr. Wiggle goes to visit Mr. Waggle. Then Mr. Waggle goes to visit Mr. Wiggle. Then both of them go to visit each other and meet in the middle.
Children of all abilities can join in the fun. Some children will just listen to you tell the story. Others will do the motions but not help tell the story. And then there are some who could tell the story all by themselves. Do the fingerplay often and they will know the story and join in more and more.
Watch the video to see the fingerplay! If you have trouble viewing the fingerplay click here.
For the last two weekends my family and I have been visiting with wildlife in the middle of a beautiful preserve. There are so many wild flowers and trees. The whole walk/hike is serenaded by wild birds singing their signature songs. It is so pretty and so relaxing to be out in nature- even with 2 children who don't know the meaning of relax! The trails are just right for little ones and beginning hikers, even limited walkers could enjoy shortened trails. And we get to hear birds singing!
The place we have been going to is the Cosumnes River Preserve. If it is not close to where you live, then I would challenge you to find a bike trail or hiking trail near your home that gets you out into nature. We all need to get away from the noise of our neighborhoods and listen to the quiet! It is so healthy for you!
Last night, I was reading a chapter in The Power of Music by Elena Mannes that spoke about what happens to our brains when we hear birdsongs. Studies have been done to analyze brain activity when subjects listen to human song and to birdsong. She explains "the scans showed the listeners showed more emotion when they heard birdsong as compared to listening to beautfiul songs sung by a human voice. " Later she writes, "One possible explanation for the increased brain activity when subjects listened to birdsong is that they were trying to find the patterns in the birdsong: human song is more familiar."
I knew we were more relaxed and happy after an afternoon of listening to birds singing. But now, it is possible that we were also stimulating our brains while listening to the music of nature!
By stimulating our brains, we are staying mentally healthy. Making new neurological pathways is always a great idea.
I want to challenge you this summer to find a place in nature for your family to enjoy. You can find an easy hike like we did, go to a quiet lake or pond in a park. Get away from the loud noises of city life and hear the birds!
I was so amazed at all the different birdsongs, I made a short video. If you can't see the video, click here.
It's almost summer. I can feel it in the air, and see it in the shimmering waves of heat on my car as I wait for my son's bus to get home.
It can be tough to plan for special needs kids in the summer time. Routines are thrown off by reduced school hours... or no school at all. And it's hard to go to bed on time when the sun is out and the neighbors are partying like rock-stars.
We are lucky that Jack has a special camp that he loves to go to. Via West has been such a wonderful place for him to learn over the years, and it is always great to watch him come home with new skills after being there even for just a few days. He'll be going for a weekend early in the summer, and then for almost a week later on.
Camps for special needs kids can be very expensive, and with budget cuts, it's rare to have them paid for by our Regional Centers, but this is one thing I was very clear to tell grandparents, and friends at his birthday: Jack loves going to camp, and any amount of money puts him that much closer to going. I never assume that someone will give my children gifts, but if we are asked, I always include a donation towards going to camp as an option.
It thrills Jack's grandparents when we call to let them know that he has been safely deposited to camp courtesy of their generosity, and I am quick to remind them that Jack going to camp has the added bonus of being a little bit of respite time for Shawn and I to reconnect with a few less responsibilities.
There are still lots of days this summer that need to be filled with activities and structure so that we can all be happy, but at least I know that there are a few days when I'm certain that Jack will have a great time while having every need met, and I will get a chance at a full night's sleep.
There are still spots available at ViaWest for summer programming, and don't forget to look through all of the resources that Dandelion has for additional camps that may be available for your child.