I really need to set alarms for updating this. Life kind of happens and I forget to write about it.
The ball pit has been going really great for the boys. And on the plus side, its been holding up, I have not needed to redo any part of it, yay!!!
So what has been going on since the fun of making the ball pit? Quite a bit; we found out that Scott is allergic to blueberries, eggs, and chicken; Aiden has had a little bit of cardiac drama; and we have been looking into private schools for the boys.
Allergies are no fun for anyone, let alone a 4 year old who breaks out in hives when he eats his favorite breakfast food, scrambled eggs. Did you know that allergies and allergic reactions can be acquired. I mean you can become allergic to something that you have been eating every day. I did not know that, but one day while Scott was eating his breakfast of scrambled eggs, he broke out into hives. Luckily, Eric was there and immediately gave him some benedryl so the reaction was kept to a minimum. We tried him tentatively on some chicken, because we were unsure how he would react to that, I mean the eggs do turn into chicken, right? Well he broke out in a rash with that as well. So Scott cannot have chicken or eggs, which are two of his favorite foods. We also found out that Scott cannot have blueberries, by him eating a few thinking they were grapes and again breaking out into hives.
After talking to Scott's doctor we made an appointment at an allergy clinic to get him officially tested, as well as to talk to the allergist about anything else we should maybe keep an eye out for. They tested him for the basics: nuts, wheat, soy, dairy, eggs, etc. He had a 3 out of 4 reaction to eggs, so definitely highly allergic to these little things. He cannot eat anything that has any eggs in them and we have to carry eli pens with us just in case he has a reaction. Problem is, eggs are in everything, and even if I make our own food at home I have to find substitutes for them. I have tried flax seeds and tofu, but the flax seeds make anything I bake flat and the tofu, well good luck trying to get Scott to eat anything with that in there. I felt horrible for Scott, he could not have his two favorite foods anymore (eggs and chicken nuggets) and we were having to change a lot of what he did eat. I mean I had to change his cereal, his granola bars, his crackers, his raviolis; like I said eggs are in everything. So Eric and I began researching other eggs and if they are conducive to people with egg allergies. We found a place here in Tacoma that we can get duck eggs from, although they are a bit on the pricey side, but I am willing to try anything and everything I can to help make this adjustment better for the little guy. I talked to the allergist and since Scott is not allergic to duck and they are from two different animals, he said we could try Scott on duck eggs.
Let me tell you, I was skeptical at first. I thought duck eggs would taste differently, I mean chicken and duck taste completely different. But to my surprise, they taste just about the same when scrambled, duck eggs are just a bit creamier. Now when baking with them, duck eggs are a bit firmer, which is fine, most of the time my recipes need that. The problem is that duck eggs come in different sizes. In one dozen we can have some that are almost triple the size of a regular egg or some that are right at the same size, so I have to measure them out, I use 1/4 cup equalling one egg in a recipe. Once we figured all this out, we were golden, Scott can have his scrambled eggs or waffles in the morning again, and I can bake muffins, cookies, pasta, etc for his lunch and suppers. We have been doing this for about a month now and things are great. Scott almost does not miss his chicken nuggets, I still need to find a substitute for these when he asks.
Now on to Aiden. About a month ago we were called from his teacher saying that Aiden had a seizure at school. This was odd as he had just been discharged from his neurologist in August for having no seizure activity. We made an appointment with her anyways to get it checked out as what the teacher and nurse described was unlike any of the seizures Aiden has had in the past. They said that he all of a sudden started saying he was tired and cold during lunch and then he started of flopping around for about 30 seconds and then took a bite of his lunch and was fine. They took his temperature and it was normal so it was not a febrile type episode, we just did not know what it was. He ended up sleeping for 4 hours afterwards and had the hiccups for about 48 hours afterwards as well.
When we met with the neurologist the very next day, she looked at him and then took our account of everything. She was certain it was not a seizure, thankfully, but that she thought it was a cardiac episode. Okay, so we went from what's going on with Aiden's brain to his brain is fine, but there's something wrong with his heart in about 24 hours. It made this Mama very anxious and worried. We made an appointment with a cardiologist as soon as we could. They did an EKG and it turned out his heart was fine, but that the cardiologist said it did sound like it was a cardiac episode. She mentioned that we could do more tests, a longer EKG (Aiden had barely tolerated the five minute one they had already done) or an echo. She also mentioned that the episode could very well be an anomaly and might never happen again. We decided that we already subjected him to enough and that if the cardiologist did not think it was worth stressing Aiden out over more tests, then we were not going to do them. I still wish we knew what happened that day, but at the same time am thankful that Aiden is healthy on all other accounts and I hope it will never happen again.
Shortly after all of this, we had the boys' birthdays. We decided to have some friends over this year to celebrate. I was incredibly nervous, I have never held a party before so I was afraid that it was going to end up being boring for everyone or something like that. I mean its not like we have a ball pit or anything that kids would love playing in, right? I think it ended going pretty well. The boys had a blast, as did all our friends. When we asked the boys what they wanted Scott said no, he's in that stage at the moment, but Aiden said he wanted a blue tutu.
He gets to pick a dress up outfit to wear when he goes potty at school, he teacher sent a picture of his favorite one home, it happens to be a pink tutu.
Aiden also says that he is a ballerina and will twirl around the house, it is really cute. I did make him his very own blue tutu, and he wears it everyday when he has been good. Next month we are also looking at signing him up for ballet classes at the Tacoma City Ballet School. I think we did good for his birthday. Scott got a Captain America shield blanket I made, I made one for Aiden as well (a big stop sign).
Scott also got a brand new lycra swing/hammock that he plays trapeze artist on all day everyday. We are also looking into sending our little monkey (AKA Scott) to climbing school at one of the rock gyms in the area.
Now for the private schools. We all hear of the kids on the spectrum getting lost in the public school system, or of the kids that are placed in a special education program who just get left there and no one actually teaches them, we are afraid of this happening to both boys. I think every parent is. Aiden is so advanced academically for his age, I mean he reads encyclopedias for fun, and Scott is reading already and so smart, it takes him two weeks to learn any think that we throw at him. They are both incredibly intelligent, and Aiden's teacher knows that and is wonderful with him, but even she has mentioned her fear of him getting placed in the special ed kindergarten next year after his first behavior issue in the gen ed kinder. Then Scott, who's teacher had a little bit of an issue with him wearing his under armor to school and I do not feel is challenging Scott. I feel next year Scott will be bored and either act out, which is definitely not him, or will regress because he is not getting challenged. So we have been searching out private schools in the area, and I think we have found the two that the boys will go to next year. Yes, I said two. Aiden and Scott have completely different learning styles and needs, they need two different learning environments, therefore, two different schools for them. Now in terms of affording them, tuition assistance is the only way. Some of the schools we had looked at charge $20-40 thousand a year for tuition, for their kindergarten classes, let alone for the remaining 12 years of school. Wow, we do not even make that in a year, so we are definitely looking into financial aid and anything that can help us afford these schools next year.
So the past few months have been quite the whirlwind of emotions and stress. I promise to try and keep up with this so my next posts will not be quite as long.
Oh the boys made some thankful placemats at school for Thanksgiving. To brighten everyone's day up, here is Scott's:
It's of course not Mommy or Daddy, its his favorite naked cat:
I have to admit, these two are attached to one another.
For those times that you wonder if people would understand better if they had a cup of autism for breakfast!
Showing posts with label Laughter. Show all posts
Showing posts with label Laughter. Show all posts
Wednesday, December 4, 2013
Monday, September 9, 2013
Ball Pit Fun!!!!
This weekend has been a blast, we made a ball pit for the boys and it helped Aiden calm down quite a bit. Aiden for the past few weeks has been overly emotional about anything and everything. We are pretty sure it was due to the stress of not having much of a routine over the summer, seeing family and then having to say goodbye to them, and then school starting back up. It's been a crazy last month for him, so I do not really blame him for being emotional. But he had been asking for a ball pit, we used to have one, but took it down a while ago. I thought, maybe he's trying to tell us what he needs, so a ball pit might be just what the doctor ordered.
So we thought we would go ahead and make a decent size one for them. Our previous ball pit was made with their old pack-n-play, but we decided now that they needed a proper ball pit, after all they are big boys now and it only seemed right they had a ball pit to fit their needs (sensory that is).
All this past week we worked on drawing up plans, we had decided to use PVC pipe as an exoskeleton and netting for the containment of the balls. We had several sizes that we went through before deciding upon 4ft X 4ft X 2ft for the frame.
So we thought we would go ahead and make a decent size one for them. Our previous ball pit was made with their old pack-n-play, but we decided now that they needed a proper ball pit, after all they are big boys now and it only seemed right they had a ball pit to fit their needs (sensory that is).
All this past week we worked on drawing up plans, we had decided to use PVC pipe as an exoskeleton and netting for the containment of the balls. We had several sizes that we went through before deciding upon 4ft X 4ft X 2ft for the frame.
Here are the plans we used.
We decided it would just be easier to have the pipe cut all to the same length, it made for much easier figuring on our part anyways. We then tried to figure out how many balls we needed and decided that 2300 seemed like a good enough number.
This past Saturday we decided was the day to go ahead and make it.
Eric worked on cutting the PVC while I worked on sewing the netting to fit. My first attempt worked out well in terms of going together and containing the balls, however we didn't use a high enough quality netting and Scott ripped it. So I ended up having to go back to Joann's and get some high pressure cargo netting, which so far has not ripped (fingers crossed). What I did for this was I cut a piece that was a 4ft square and then four pieces that were 2ft by 4 ft for the sides. I then attached the sides to the bottom and then to each other to form the fabric box. I then made eight tabs for each side out of some scrap denim I had, I made those 4in wide by 5.25in (so the PVC will fit through them). Then once I had those all attached to the sides I slide it on the PVC and we dumped all the balls back into to. We also decided to make a ladder for the boys to get in and out of the ball pit all by them selves.
And viola, ball pit fun!
Wednesday, January 25, 2012
20 things only the parent of a child with Autism thinks... and the reasoning from our house!
Please note this is posted by Eric. Cinnamon just started the post before I hijacked the computer!
If you understand 10 of these you might just be a parent of a child on the Spectrum. If you understand all of them... God help you!
If you understand 10 of these you might just be a parent of a child on the Spectrum. If you understand all of them... God help you!
1. Do I have enough space in the living room for the trampoline?
- Most people don't have a jungle gym in their living room. My house is an all in one gym, therapy center, schoolhouse, and nut house! Don't believe me? Come on over some time. I promise not to drop the kids on you and run... at least not within the first 5 seconds (mostly because it will take me that long to realize you aren't imaginary!)
- Most people don't have a jungle gym in their living room. My house is an all in one gym, therapy center, schoolhouse, and nut house! Don't believe me? Come on over some time. I promise not to drop the kids on you and run... at least not within the first 5 seconds (mostly because it will take me that long to realize you aren't imaginary!)
2. Did I get enough velcro?
- Picture exchange communication system. PECS. Such a lovely 4 letter word! It is the bane of my existence. I spend more time trying to put velcro dots on pictures than I do on eating, and I eat a lot!
3. Three letters...IEP. If you want a 4 letter word... IFSP!
- Most parents have never heard of these, most never will. I live in two. One IEP for the oldest, one IFSP for the youngest. One bottle of scotch for me! Wait, that doesn't work does it? On a good note though, we have some of the greatest educators working with us, and they have been wonderful to work with on the IEP and IFSP. We always hear the horror stories of the school district that won't do something, but ours point blank said here's what we have, here's what we don't, and we will help you with all of it!
- Most parents have never heard of these, most never will. I live in two. One IEP for the oldest, one IFSP for the youngest. One bottle of scotch for me! Wait, that doesn't work does it? On a good note though, we have some of the greatest educators working with us, and they have been wonderful to work with on the IEP and IFSP. We always hear the horror stories of the school district that won't do something, but ours point blank said here's what we have, here's what we don't, and we will help you with all of it!
4. I live in a 2B, 1.5Bth Schoolhouse.
- No, I'm not talking about living in an old schoolhouse. I mean that my living room looks like someone just walked out of a Scholastic Bookstore sale, and plastered everything on my walls! I have rewards stations, ABC posters, Digraphs, and Schedules all over the place. And once again, I use more Velcro for that. I really should have bought stock in Velcro!
- No, I'm not talking about living in an old schoolhouse. I mean that my living room looks like someone just walked out of a Scholastic Bookstore sale, and plastered everything on my walls! I have rewards stations, ABC posters, Digraphs, and Schedules all over the place. And once again, I use more Velcro for that. I really should have bought stock in Velcro!
5. I know where the best education stores are
- Don't believe me? I know where to get 99.9% of the supplies that I find in a classroom. I have found items that even teachers don't know exist. If it is used for education I probably know where to find it, and most likely that place is on one of the shelves in my own home, go back to #4 for more information on that one!
- Don't believe me? I know where to get 99.9% of the supplies that I find in a classroom. I have found items that even teachers don't know exist. If it is used for education I probably know where to find it, and most likely that place is on one of the shelves in my own home, go back to #4 for more information on that one!
6. How should I organize my sons' PECS?
- Most people think I'm crazy when I talk about different forms of communication for people who are non-verbal. My co-workers think I have lost it! They have a hard time finding a way to talk to people who have difficulty communicating, and I just break out something random that I find, and we make it a communication device.
7. Where to hang therapy swings?
- Have you ever looked for a ceiling joist that is load bearing? If you haven't then you obviously don't have a child who likes sensory swings. Oh, you mean swings are just for play? Try being in my house for 24 hours without a sensory swing. You will beg me for one by the end of the day, even if it is for you to hide in!
8. STAMP!
- No, not the craft stamp. The one and only (fine two and only) School Therapy And Medical Profile binder! A comprehensive file organization system that will tell you everything you need to know about what is going on with my child, and will give you all the tools to steal my identity at the same time! Yup, God bless TriCare and the use of my Social Security number for record keeping on everyone in my family. In reality though the STAMP is a really neat tool. It has sections for everything that we need to keep track of for any appointment with the School, any therapist, or any doctor that either of my children have to see. Is it perfect? No. Does it work for us though? So far so good!
- No, not the craft stamp. The one and only (fine two and only) School Therapy And Medical Profile binder! A comprehensive file organization system that will tell you everything you need to know about what is going on with my child, and will give you all the tools to steal my identity at the same time! Yup, God bless TriCare and the use of my Social Security number for record keeping on everyone in my family. In reality though the STAMP is a really neat tool. It has sections for everything that we need to keep track of for any appointment with the School, any therapist, or any doctor that either of my children have to see. Is it perfect? No. Does it work for us though? So far so good!
9. Touchy feely feel good clothes.
- Silk feels good, Burlap feels bad. All other fabrics will require a minimum of 30 mins of touching, licking, and smearing with Peanut Butter to determine if they are acceptable or not. Neoprene has passed the test, as has UnderArmor. ACU material is also ok in short spurts, waffle pattern fabric is a big ole no go!
- Silk feels good, Burlap feels bad. All other fabrics will require a minimum of 30 mins of touching, licking, and smearing with Peanut Butter to determine if they are acceptable or not. Neoprene has passed the test, as has UnderArmor. ACU material is also ok in short spurts, waffle pattern fabric is a big ole no go!
10. Gluten Free! What's a Gluten?
- B.R.O.W. Barley, Rye, Oats, and Wheat. The final 4 of bad items in my home. All of them contain a protein called gluten, and when anyone except myself has gluten we all suffer the consequences.
- B.R.O.W. Barley, Rye, Oats, and Wheat. The final 4 of bad items in my home. All of them contain a protein called gluten, and when anyone except myself has gluten we all suffer the consequences.
11. I scream you scream we all scream for... dairy free milk?!
- Have you ever tried to find ice cream that wasn't made from milk? I know where to find at least 4 different varieties in my local grocery store. That is before we even talk about the joys of online shopping. My family has a personal relationship with the UPS man from all the deliveries he makes to our house. Thankfully he understands since his wife does the majority of her shopping online, and he has to deliver to his own home.
- Have you ever tried to find ice cream that wasn't made from milk? I know where to find at least 4 different varieties in my local grocery store. That is before we even talk about the joys of online shopping. My family has a personal relationship with the UPS man from all the deliveries he makes to our house. Thankfully he understands since his wife does the majority of her shopping online, and he has to deliver to his own home.
12. Yellow #5, Blue #2, Red #40 set hike!
- You ever notice how many products have artificial colors and flavors? I never did until I started having to keep track of what we gave to the boys. I was going to give my youngest a slushie the other day, and then I remembered that it had red dye in it. Red dye causes him to have vomiting spells that make Mt. St. Helens look like a sprinkler. I am so glad that I thought about it before I gave him that Cherry slushie... and I'm glad my wife didn't catch me almost give it to him!
Update: My wife read about the near miss on the Cherry slushie, and I no longer have the slushie mix. So, if anyone would like to discreetly slip some cherry slushie mix to me I have a dead drop location outside my house that is ready for slushie delivery!
- You ever notice how many products have artificial colors and flavors? I never did until I started having to keep track of what we gave to the boys. I was going to give my youngest a slushie the other day, and then I remembered that it had red dye in it. Red dye causes him to have vomiting spells that make Mt. St. Helens look like a sprinkler. I am so glad that I thought about it before I gave him that Cherry slushie... and I'm glad my wife didn't catch me almost give it to him!
Update: My wife read about the near miss on the Cherry slushie, and I no longer have the slushie mix. So, if anyone would like to discreetly slip some cherry slushie mix to me I have a dead drop location outside my house that is ready for slushie delivery!
13. All was well, then we got to the milk aisle... the problem with WalMart!
- Kids always act perfect at the store, until you get to the milk aisle. Why? Because they realize that when you get to the milk aisle you have already filled two carts, and can't just leave said carts for someone else to put all of the stuff away. I have no problem with the screaming from my kids, or the being beaten up by a 3 year old. My problem is with the other people in the store who come up and tell me that I just need to "whoop that kids @$$" and all will be solved. Sometimes I wonder if they didn't get their head whooped a couple of times to cause the amount of brain damage needed to be that dense. If all my kid needed was whooped I probably would have done that a long time ago, but my kid doesn't respond to a spanking. Believe me I have tried a grand total of 3 times, and all 3 times I have gotten laughed at by my kids. That is the humiliating part (the being laughed at by the kids).
- Kids always act perfect at the store, until you get to the milk aisle. Why? Because they realize that when you get to the milk aisle you have already filled two carts, and can't just leave said carts for someone else to put all of the stuff away. I have no problem with the screaming from my kids, or the being beaten up by a 3 year old. My problem is with the other people in the store who come up and tell me that I just need to "whoop that kids @$$" and all will be solved. Sometimes I wonder if they didn't get their head whooped a couple of times to cause the amount of brain damage needed to be that dense. If all my kid needed was whooped I probably would have done that a long time ago, but my kid doesn't respond to a spanking. Believe me I have tried a grand total of 3 times, and all 3 times I have gotten laughed at by my kids. That is the humiliating part (the being laughed at by the kids).
14. I want to go for an outing... can I leave the kids there?
- Everyone wants to get out of the house every so often. I wish that I could, but I have to look at what therapy is scheduled, what kind of a day the boys are having, and what the phase of the moon is. We have ABA therapy Monday through Friday, Speech on Saturday, OT every other Thursday, Developmental Preschool on Monday, Tuesday, Thursday, and Friday, and Medical appointments whenever we can find the time. If the boys are having a good day we can go somewhere, but we have to have both boys in a good mood, and it rarely happens that both are having a good day at the same time. As for the moon, I swear my children are Werewolves. If it is a full moon they are both acting crazy. Apparently this is not unique to our family, it is common for parents of Autistic children to notice this.
- Everyone wants to get out of the house every so often. I wish that I could, but I have to look at what therapy is scheduled, what kind of a day the boys are having, and what the phase of the moon is. We have ABA therapy Monday through Friday, Speech on Saturday, OT every other Thursday, Developmental Preschool on Monday, Tuesday, Thursday, and Friday, and Medical appointments whenever we can find the time. If the boys are having a good day we can go somewhere, but we have to have both boys in a good mood, and it rarely happens that both are having a good day at the same time. As for the moon, I swear my children are Werewolves. If it is a full moon they are both acting crazy. Apparently this is not unique to our family, it is common for parents of Autistic children to notice this.
15. Open the (#&$^(#@&($(!!(#*$) Door!
- No, I'm not talking the door to their room. I'm talking the door to the car. Both boys have figured out how to lock their doors just as fast as I can hit the unlock button and get to the door handle. I finally figured out the solution though... duct tape is silver! J/k... I now use the key fob to unlock the door while I'm holding the handle.
- No, I'm not talking the door to their room. I'm talking the door to the car. Both boys have figured out how to lock their doors just as fast as I can hit the unlock button and get to the door handle. I finally figured out the solution though... duct tape is silver! J/k... I now use the key fob to unlock the door while I'm holding the handle.
16. (To the tune of Hero) There goes my iPod, watch it as it breaks!
- I think I have spent more money in buying Apple products, and in Otterbox cases, than I have in anything else, except for Velcro (yup, another Velcro reference!). My children know how to make iPods fly through the air, and down the stairs onto the concrete below. So far we have had 3 iPods in the past 2 or 3 years, and only one and a half are still living.
- I think I have spent more money in buying Apple products, and in Otterbox cases, than I have in anything else, except for Velcro (yup, another Velcro reference!). My children know how to make iPods fly through the air, and down the stairs onto the concrete below. So far we have had 3 iPods in the past 2 or 3 years, and only one and a half are still living.
17. When clock goes Beep Beep then go night night!
- If you know what a time timer is raise your right hand, if you have one in your home raise your left hand. If you have both hands raised run around like a crazy person! Wait, I do that even without both hands raised! Aiden is finally understanding the concept of first then. First clock goes beep beep, then we go night night. We have a huge 12" clock on the wall called a Time Timer. Google it sometime if you aren't sure what it is. Bear in mind I do not have any financial connection to this company, but by George I wish I did!
- If you know what a time timer is raise your right hand, if you have one in your home raise your left hand. If you have both hands raised run around like a crazy person! Wait, I do that even without both hands raised! Aiden is finally understanding the concept of first then. First clock goes beep beep, then we go night night. We have a huge 12" clock on the wall called a Time Timer. Google it sometime if you aren't sure what it is. Bear in mind I do not have any financial connection to this company, but by George I wish I did!
18. Oooo he's my little run away.
- It may be an old song, but it is also one of my biggest fears. Aiden thinks that running away is fun, and that it is even more fun if he doesn't respond when you ask where he is. I fully understand why parents leash their kids, and with all the running Aiden does at times I think there should be a leash law for children under the age of 18!
- It may be an old song, but it is also one of my biggest fears. Aiden thinks that running away is fun, and that it is even more fun if he doesn't respond when you ask where he is. I fully understand why parents leash their kids, and with all the running Aiden does at times I think there should be a leash law for children under the age of 18!
19. Is it a baby gate? Or is it peace of mind?
- Have you ever thought about how shiny and cool looking a knife is? What if you put it in a light socket? Yup, both Aiden and Scott have tried it. Thankfully we caught them before they could complete the task. After that we bought a ton of those little plastic cover things that make it so that kids can get to the socket but the parents can't. Isn't that how they work in your house? Since I couldn't get them off we elected to go the route of having multiple baby gates throughout the house. Now I just have to remember to open them or step over them when I am running for freedom in the middle of the night!
- Have you ever thought about how shiny and cool looking a knife is? What if you put it in a light socket? Yup, both Aiden and Scott have tried it. Thankfully we caught them before they could complete the task. After that we bought a ton of those little plastic cover things that make it so that kids can get to the socket but the parents can't. Isn't that how they work in your house? Since I couldn't get them off we elected to go the route of having multiple baby gates throughout the house. Now I just have to remember to open them or step over them when I am running for freedom in the middle of the night!
20. Allergies to lil bow wow
- My kids like dogs and cats, but their respiratory systems don't like the animals. That is why I have a naked mole rat as a cat... I mean a Sphynx, and I have an Italian Greyhound for a dog. They don't shed, and they both like to cuddle. That is until they figure out that I left half a sandwich on the table, and then they are gone. I guess they too have learned the joy that is a Peanut Butter and Butter sandwich!
- My kids like dogs and cats, but their respiratory systems don't like the animals. That is why I have a naked mole rat as a cat... I mean a Sphynx, and I have an Italian Greyhound for a dog. They don't shed, and they both like to cuddle. That is until they figure out that I left half a sandwich on the table, and then they are gone. I guess they too have learned the joy that is a Peanut Butter and Butter sandwich!
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