As if J hasn't been having a hard enough time lately, here we are at 4th of July. He has been even more on edge the last couple of days since we live in a city where certain fireworks are still legal. Regardless of the fact that it is only legal to light them off between 8-1l on the 4th, they have been steadily increasing every day. Last night they kept waking hubby and I up until 3am. Thankfully the boys slept through them all.
The plan was to go to a barbecue at a friends house and bring J's headphones and ear plugs for D and still have a great family time. We just tried some very tame fireworks at home and J turned into a quivering mess at the sound of a Pop It being thrown on the ground. He could tolerate the Pop Its as long as he had his headphones on. We tried a small fountain that shot sparks up and made a crackling sound and he completely fell apart. It was pure torture. D LOVED the fireworks and can't wait to go to the barbecue, and now J is refusing to leave the house.
Yet again, Autism robs our family of some great family time and we have to divide up to keep both boys happy. I am just sad, frustrated and angry and am having a really hard time getting into the spirit of the holiday.
I am not mad at J at all. I feel so bad that it is so terrifying and painful for him. I am mad at the monster that is Autism.
Sunday, July 4, 2010
Wednesday, June 30, 2010
Perpetual Traumatic Stress Disorder
Here we are, summer "vacation." It is more like "summer intensive" at my house. The boys go from a structured routine, to having everything come to a screeching halt. The first week went well. I had braced myself for insanity but we kept to a bit of a routine and it wasn't so bad.
Then came this week......D has karate day camp from 8:30-4:30 Mon-Thurs. Last summer when he went it was SO nice. Having one on one time with J made my day so much easier! When they got to play together in the evening they weren't sick of each other so they played fairly well together. This go around has been insane. J I think is having a really hard time without his brother being here. I have tried to schedule in structure and fun but he has been resisting me and battling me at every turn. I can tell he is upset because his rigidity has gone through the roof. By the end of the school year he was doing SO well, but the change to summer came and his "autistic behaviors" have skyrocketed. By the end of the day yesterday, I felt traumatized, both by the constant battles and the realization that I let frustration get the best of me and I handled them poorly. I wonder how many parents of special needs kids if tested would be diagnosed with PTSD. Except for us they would have to re-name it Perpetual Traumatic Stress Disorder. There is nothing POST about it. It happens day after day with no end in sight.
Today I woke up stressed and worried about the day ahead. I got D off to camp and after battle #12 with J by 9 am decided I needed a new perspective. I opened my Bible and brought out a parenting study I did a while ago and redid some work in it. J was absorbed in his obsession "Wipeout." It gave me the perspective shift I needed and calmed my stressed and anxious heart. So far I have decided that I will work hard to chose my battles wisely and then make sure I win. The number of battles of will haven't lessened today, but I have remained calm, haven't yelled, and so far I have won. I am reinforcing manners, respect and rules. I pray that if I put the work in, it will in time get easier. I am no less exhausted than yesterday, but at least I don't feel guilty about the things that came out of my mouth and how I reacted. I pray I can keep this up.
Then again it is only 3pm and that means 5 hours until the bliss of bedtime. A lot can go down in 5 hours!
J starts a feeding group on the 13th so maybe being back at the Center will help.....
Then came this week......D has karate day camp from 8:30-4:30 Mon-Thurs. Last summer when he went it was SO nice. Having one on one time with J made my day so much easier! When they got to play together in the evening they weren't sick of each other so they played fairly well together. This go around has been insane. J I think is having a really hard time without his brother being here. I have tried to schedule in structure and fun but he has been resisting me and battling me at every turn. I can tell he is upset because his rigidity has gone through the roof. By the end of the school year he was doing SO well, but the change to summer came and his "autistic behaviors" have skyrocketed. By the end of the day yesterday, I felt traumatized, both by the constant battles and the realization that I let frustration get the best of me and I handled them poorly. I wonder how many parents of special needs kids if tested would be diagnosed with PTSD. Except for us they would have to re-name it Perpetual Traumatic Stress Disorder. There is nothing POST about it. It happens day after day with no end in sight.
Today I woke up stressed and worried about the day ahead. I got D off to camp and after battle #12 with J by 9 am decided I needed a new perspective. I opened my Bible and brought out a parenting study I did a while ago and redid some work in it. J was absorbed in his obsession "Wipeout." It gave me the perspective shift I needed and calmed my stressed and anxious heart. So far I have decided that I will work hard to chose my battles wisely and then make sure I win. The number of battles of will haven't lessened today, but I have remained calm, haven't yelled, and so far I have won. I am reinforcing manners, respect and rules. I pray that if I put the work in, it will in time get easier. I am no less exhausted than yesterday, but at least I don't feel guilty about the things that came out of my mouth and how I reacted. I pray I can keep this up.
Then again it is only 3pm and that means 5 hours until the bliss of bedtime. A lot can go down in 5 hours!
J starts a feeding group on the 13th so maybe being back at the Center will help.....
Monday, May 24, 2010
Holly Robinson Peete is on my list.....and I am on my soapbox.
As an admitted reality show junkie, I have always watched The Celebrity Apprentice. It is even a show that my husband enjoys so we watch it together. I was especially interested this season when I found out that Holly Robinson Peete was there to raise money for an Autism charity because one of her sons is affected. She raised a huge amount of money and REPEATEDLY talked about the fact that her charity The HollyRod Foundation helps families to pay for the expensive treatments for Autism! WOO HOO! Excitedly, I logged on to the foundation's "website". http://www.hollyrod.org
I was crushed to see that the site is FULL of info promoting the Peetes and their various books and when their next media appearances are. There is a link to a few Autism resources that could be accessed in seconds with any search engine. In one tiny "How We Help" link there is a Today and Tomorrow section. Apparently "Today" they only provide information. In late 2012/early 2013 they will be building a Compassionate Care Center to serve the Los Angles area and a national grant program for the rest of us.
I understand that the construction process is long, involved and time consuming, but it seems like they should be able to put together some sort of grant program a lot faster than 2 years away. She raised nearly half a million dollars on Celebrity Apprentice. What is going to happen to all of that money for the next several years. As a mother of a child with Autism, she should know how crucial early intervention is! While she is spending her time on media appearances and profitable book deals, underprivileged children are missing out and falling through the cracks.
If you are a celebrity who is going around championing your own foundation, and you appear on a TV show to raise money for that foundation, have it ready to actually help people! Don't use it as a media promotion tool!
ARG!!!!!
I was crushed to see that the site is FULL of info promoting the Peetes and their various books and when their next media appearances are. There is a link to a few Autism resources that could be accessed in seconds with any search engine. In one tiny "How We Help" link there is a Today and Tomorrow section. Apparently "Today" they only provide information. In late 2012/early 2013 they will be building a Compassionate Care Center to serve the Los Angles area and a national grant program for the rest of us.
I understand that the construction process is long, involved and time consuming, but it seems like they should be able to put together some sort of grant program a lot faster than 2 years away. She raised nearly half a million dollars on Celebrity Apprentice. What is going to happen to all of that money for the next several years. As a mother of a child with Autism, she should know how crucial early intervention is! While she is spending her time on media appearances and profitable book deals, underprivileged children are missing out and falling through the cracks.
If you are a celebrity who is going around championing your own foundation, and you appear on a TV show to raise money for that foundation, have it ready to actually help people! Don't use it as a media promotion tool!
ARG!!!!!
Friday, May 21, 2010
A quick break for bathroom humor.....
My dear husband has discovered an app on his phone that plays South Park quotes. One of them has Cartman saying, "I crapped my pants! Hey guys! I just crapped my pants!" I dared him to play it for D to see his reaction. He very quietly walked up to D, placed the phone near his ear and hit play. D giggled and cried out, "It's Veggie Tales!" I truly think I peed a little, I was laughing so hard.
What a little yarn and some pony beads can do......
Wednesday night I was having the boys work on some fine motor activities. D was stitching on a plastic frame and J wanted to make a necklace. Usually I give him somewhat firm plastic cord to make a necklace, but I decided to try some of the yarn from D's project. Once I put a little tape on the end to prevent fraying, J did really well and he was even using the small pony beads. I asked him if he wanted to give it to his OT assistant at school and he did. When he came home from school the next day I got the nicest email from his OT assistant about how much it touched her that he made that for her and how much it meant to her. We ended up getting into a great email exchange about what he has been working on in OT and now I see why he is making so much progress.
Whenever I have IEP meetings at his school, the OT is the one at the meetings, not the OT assistant who actually works with him. This doesn't make sense at all to me but I choose my battles. I had somewhat written off the OT he had been getting at school because everything with the OT had been a battle. It turns out that the OT assistant is doing some amazing work with him and really understands where he is at and what he needs to work on. If only they had opened the lines of communication between me and the person who was actually WORKING with my child, I would have felt more confident in the services he was receiving!
Oh well, what matters now is that little J working so hard on a little necklace was able to make someone feel great and open a line of communication that was so greatly needed.
Whenever I have IEP meetings at his school, the OT is the one at the meetings, not the OT assistant who actually works with him. This doesn't make sense at all to me but I choose my battles. I had somewhat written off the OT he had been getting at school because everything with the OT had been a battle. It turns out that the OT assistant is doing some amazing work with him and really understands where he is at and what he needs to work on. If only they had opened the lines of communication between me and the person who was actually WORKING with my child, I would have felt more confident in the services he was receiving!
Oh well, what matters now is that little J working so hard on a little necklace was able to make someone feel great and open a line of communication that was so greatly needed.
Thursday, May 20, 2010
The Forever Diaper Bag
Sometimes I feel like Autism is like a diaper bag that you never get to get rid of. It is always there.
- You always have to think about how your kiddos will react to a situation before you take them there.
- Make sure you get the vacuuming done while the kids are at school because the noise bothers them.
- Make sure you put the next days' schedule up on the schedule board so it is there when they wake up.
- Explain to the other moms at the gymnastics place why your 4 year old isn't potty trained yet and why he has to turn the lights off and then back on when it is time to leave.
- Have extra meetings with teachers. Some will understand and some you will have to fight tooth and nail to get the bare minimum of what your child needs.
- Always remember to have drinks and snacks and the required CD for the car to ease transitions.
- Know all of the right brands of foods and where you can get them and don't ever run out or risk your child not eating.
- Figure out whether an issue is behavioral, sensory or autism related and then try 1000 things to try to fix it.
- Worry about when they get invited to birthday parties and worry when they don't get invited to birthday parties.
- Arrange countless therapy appointments and then provide transportation.
- Try to get into their heads to figure out what is in their minds and help them try to express themselves.
- Never ever stop worrying because you know that everything in this difficult world is always just a bit harder on your child.
I sometimes get angry because the mom's of typically developing kids get to "outgrow" the diaper bag and move past stages into new ones. At some point they get to leave some things behind. I realize that my boys too will outgrow stages and grow into new ones. They will have successes and failures, but our family will always have that extra "diaper bag" that we will never get to put down. An extra weight, an extra consideration, an extra burden that we will always have to deal with. Some days it is light and I almost don't even feel it. Other days the weight of everything brings me to my knees.
God chose me to mother these kids for a reason and I am thankful every day for that.
But some days I just wish I could put The Forever Diaper Bag down.
- You always have to think about how your kiddos will react to a situation before you take them there.
- Make sure you get the vacuuming done while the kids are at school because the noise bothers them.
- Make sure you put the next days' schedule up on the schedule board so it is there when they wake up.
- Explain to the other moms at the gymnastics place why your 4 year old isn't potty trained yet and why he has to turn the lights off and then back on when it is time to leave.
- Have extra meetings with teachers. Some will understand and some you will have to fight tooth and nail to get the bare minimum of what your child needs.
- Always remember to have drinks and snacks and the required CD for the car to ease transitions.
- Know all of the right brands of foods and where you can get them and don't ever run out or risk your child not eating.
- Figure out whether an issue is behavioral, sensory or autism related and then try 1000 things to try to fix it.
- Worry about when they get invited to birthday parties and worry when they don't get invited to birthday parties.
- Arrange countless therapy appointments and then provide transportation.
- Try to get into their heads to figure out what is in their minds and help them try to express themselves.
- Never ever stop worrying because you know that everything in this difficult world is always just a bit harder on your child.
I sometimes get angry because the mom's of typically developing kids get to "outgrow" the diaper bag and move past stages into new ones. At some point they get to leave some things behind. I realize that my boys too will outgrow stages and grow into new ones. They will have successes and failures, but our family will always have that extra "diaper bag" that we will never get to put down. An extra weight, an extra consideration, an extra burden that we will always have to deal with. Some days it is light and I almost don't even feel it. Other days the weight of everything brings me to my knees.
God chose me to mother these kids for a reason and I am thankful every day for that.
But some days I just wish I could put The Forever Diaper Bag down.
Preschool Field Trip to the Zoo
I call this blog The Autism Rollercoaster because there are good days and bad days and I swear my kids are more autistic some days than others.
J's school field trip to the zoo was on Tuesday. Apparently the second Tuesday of each month is free admission for people with disabilities. So....guess when all of the schools for people with disabilities choose to go to the zoo? It was somewhat of a madhouse but it had its advantages and disadvantages. A big advantage was that if your kiddo was having a meltdown no one even blinked because they had all been there and understood. A disadvantage was that the crowds were a little more unruly and with that many people with varying issues, you pretty much guaranteed that someone in the crowd would have sensory issues that would set off your kiddo.
J couldn't handle it at all if there were too many people at an exhibit so we would leave and find somewhere quieter. He had moments where he got interested in the animals and even touched some of the sea stars and small aquatic animals in the "touching" area. Other times he was very autistic. At the polar bears there were two huge polar bears playing in the water. Off to the side on the wall was an example of one of the balls that they give the polar bears to show how tough they have to be. J COMPLETELY ignored the polar bears and spent 15 minutes obsessively spinning the ball on the wall.
Of course towards the end J wasn't looking where he was going and ran into an elderly lady in a scooter. He was fine but fell apart because he was tired. Then it started POURING down rain. This resulted in me carrying our heavy bag and him up 3 huge flights of stairs. I finally got him to walk up to the bus. He fell asleep the last 10 minutes of the ride. We got home, changed into warm dry clothes and then snuggled in my bed to watch a movie. It was a long and exhausting day but we made it through it. My muscles are very sore from all of the walking and carrying but it is worth it because I will do anything for either of my little guys.
J's school field trip to the zoo was on Tuesday. Apparently the second Tuesday of each month is free admission for people with disabilities. So....guess when all of the schools for people with disabilities choose to go to the zoo? It was somewhat of a madhouse but it had its advantages and disadvantages. A big advantage was that if your kiddo was having a meltdown no one even blinked because they had all been there and understood. A disadvantage was that the crowds were a little more unruly and with that many people with varying issues, you pretty much guaranteed that someone in the crowd would have sensory issues that would set off your kiddo.
J couldn't handle it at all if there were too many people at an exhibit so we would leave and find somewhere quieter. He had moments where he got interested in the animals and even touched some of the sea stars and small aquatic animals in the "touching" area. Other times he was very autistic. At the polar bears there were two huge polar bears playing in the water. Off to the side on the wall was an example of one of the balls that they give the polar bears to show how tough they have to be. J COMPLETELY ignored the polar bears and spent 15 minutes obsessively spinning the ball on the wall.
Of course towards the end J wasn't looking where he was going and ran into an elderly lady in a scooter. He was fine but fell apart because he was tired. Then it started POURING down rain. This resulted in me carrying our heavy bag and him up 3 huge flights of stairs. I finally got him to walk up to the bus. He fell asleep the last 10 minutes of the ride. We got home, changed into warm dry clothes and then snuggled in my bed to watch a movie. It was a long and exhausting day but we made it through it. My muscles are very sore from all of the walking and carrying but it is worth it because I will do anything for either of my little guys.
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