Sorry it’s been so incredibly long since an update. Life is just like that sometimes, ya know? I always thought that if anything, summer would be far more relaxing. I really need to get it through my head that it’s not.
This summer both Boo and Jedi have been very involved with extra curricular learning groups.
Boo:
Boo, the busiest by far, goes to a “Fun with Spot” program twice a week, and two different “Language through Literature” programs that are offered by the OT’s at our local hospital. Boo really loves it, and improvements in her language have become obvious.
We are trying to work with her with math and reading, though this is really difficult. Her attention span just isn’t going for it, but we’ll keep plugging away. I have found the secret to her motivation is chocolate. Anything chocolate- and since reading/math is our biggest concerned for her this coming school year, I’ll feed her all the chocolate she wants if it means she’ll keep trying.
Jedi:
Jedi has just EXPLODED in words! And this is very recent- I’d say within the last week!
He says his name, mom, book, Opa (His grandfather), juice, snack, play, up, and he is able to repeat all the words from his flashcards. He attends a speech and occupational therapy class twice a week through the public schools. It was the same one Boo attended when we first moved. I was able to see him in the class for the first time last week, Hawaiian Pineapple always takes him. It was amazing to watch him hit every obstacle course with out any hesitation. It was quite dizzying but fun to watch. When he first came into the room he ran up and down a ramp, then onto a platform and rolled down the ramp belly down on a scooter. Then belly down on a slide through a tunnel. Whizzed by me as if I didn’t exist and hit apparently his favorite thing ever-bare with me this is kinda hard to describe: He sat on like a little bike and rolled down a track. That’s the best I can do, sorry for the lack of description. Halfway across the room he would come to a rolling stop but wasn’t satisfied. So he would push himself on the little bike until he hit the wall. Don’t ask me, I just birthed the kid.
He also spent time on a trampoline and a sensory swing, just like Boo’s.
Once that was done, he and his classmates went into another room where they sang songs and worked on language. The teacher was wonderful, but I have to tell you, if I ever participated in a really bad mood, her extreme perkiness could be a potential health risk for her.
We are still working on Jedi’s behavior in preschool. He just can’t resist the occasional chomp on some poor unknowing kid’s shoulder here and there. I know he only does it when he’s really mad, but good grief!
Sans meat eating Jedi, it's been a fantastic Summer for the kids. Hopefully this is a sign of more good things to come!
Monday, July 27, 2009
Thursday, May 21, 2009
end of year iep
“Right now it’s about taking joy from the little things.” That’s something a good friend of mine says when she is feeling overwhelmed, and I agree completely.
And after Boo’s IEP (Indivualized Education Plan) meeting this past Tuesday, I am taking a lot of joy; some fear that I’m setting her up for failure, and a pocket full of anticipation that this will be the year that things come together for her. I know I say that every school year- but until the magic happens, I’m going to continue that hope and remain optimistic.
IEP meetings can be rather long and mentally draining. This one was three LONG hours. It essentially consists of Boo’s teachers, the school principal, and everyone else who works with the student that has special needs to meet and make a formulated educational plan. This ensures the parent that their child is getting a fair chance at the same education as other students. This also helps the educators help the child succeed and guarantees them the tools they need through the school district.
These meetings have a reputation for being very difficult- this only happens when the parents ‘wants’ do not match what the educators feel the child needs. For example, a friend of mine is working on getting her Teacher’s degree. She attended a class that went over IEP’s. Her professor told the story of a mother and father who insisted that their child have a priest with him at all times because they insisted he was possessed. This is an extreme case, and it sounds like the parents need an exorcism, not the kid, but it just shows you that crazy things are requested. On the flip side, sometimes it’s a case of the teacher not wanting to extend him or herself and follow through on the IEP plan. The nice thing about IEP’s is that they are binding documents, and when everyone signs it- that’s it. Neither parents nor teachers can change their minds about anything or complain until the next IEP session. There are two in a school year; once in the beginning and again towards the end.
The first one is to just go over the services rendered and see how it’s working. Changes can be made and plans can be modified. You also discuss your child’s educational goals for the end of the year.
The end of year IEP (which is the one we just had) discusses the plans for the next school year. We discussed what Boo would need to succeed in the first grade and our concerns about her being so behind. Now deciding to hold her back is not a part of an IEP, we discussed it none the less. After about three hours, we all decided that keeping her in Kindergarten one more year wouldn’t benefit her. She is not reading or spelling yet, so she will have a Para Pro again that will work with her. We decided that Boo will need a different spelling list from the other kids, one that is simpler. She will continue OT, Speech Therapy, and our goals are to increase her reading and math skills. We also would like to see her only use the Para Pro for 2 hours per day, meaning that she would only need assistance for academics for two hours each day, though if it doesn’t happen that’s ok. The aide will stay as long as needed. And if she needs to be held back in 1st grade, so be it, but My Hawaiian Pineapple and I really want to give her a chance- after all, this could be her “magical” year.
I’m nervous but excited. We are going to enroll her in as many programs as possible like swimming and reading classes. There is also a program called “Fun with Spot” at the local hospital that provides free OT for Autistic and SID children that is about six weeks long. Boo was in it last year and loved it. Her principal also gave me a work at home math book that my step father will help her with over the summer. (I suck at math.)
I haven’t signed off on the IEP yet, because these meetings are so overwhelming, I like to take home the report and give it a good read over. Most parents don’t understand that they can do this- you are not required to sign them at the meeting. You want to make sure you are happy with the plans and goals before you agree to them. And this morning I realized I forgot to have them add her sensory swing, so I will email the school and let them know so they can print a new copy with the sensory swing noted as part of the plan. Then I wills sign it.
IEP’s suck, I hate the meetings especially when it doesn’t go the way I think it should. However this year was the first time I left satisfied and content. Last year it was down right ugly, so much so that I refused to sign, and demanded another IEP with the District Super Intendant present. (Hey, when it’s my daughter’s needs on the line, being uber bitch comes naturally.) I’ve never had a meeting go so smoothly before, and since this is a first it does leave me with the feeling that anything can happen and *just maybe* this will be Boo’s magical year. Then she can advance on to college, become a high power attorney and buy Mum a new house and fancy car.
Ok fine, just keeping up with the other kids in class will make me happy too. Either way, I am just taking joy in the little things.
PS: I am now having My Hawaiian Pineapple proof read my blogs, so if there are any mistakes in this entry, it's his fault. :o)
And after Boo’s IEP (Indivualized Education Plan) meeting this past Tuesday, I am taking a lot of joy; some fear that I’m setting her up for failure, and a pocket full of anticipation that this will be the year that things come together for her. I know I say that every school year- but until the magic happens, I’m going to continue that hope and remain optimistic.
IEP meetings can be rather long and mentally draining. This one was three LONG hours. It essentially consists of Boo’s teachers, the school principal, and everyone else who works with the student that has special needs to meet and make a formulated educational plan. This ensures the parent that their child is getting a fair chance at the same education as other students. This also helps the educators help the child succeed and guarantees them the tools they need through the school district.
These meetings have a reputation for being very difficult- this only happens when the parents ‘wants’ do not match what the educators feel the child needs. For example, a friend of mine is working on getting her Teacher’s degree. She attended a class that went over IEP’s. Her professor told the story of a mother and father who insisted that their child have a priest with him at all times because they insisted he was possessed. This is an extreme case, and it sounds like the parents need an exorcism, not the kid, but it just shows you that crazy things are requested. On the flip side, sometimes it’s a case of the teacher not wanting to extend him or herself and follow through on the IEP plan. The nice thing about IEP’s is that they are binding documents, and when everyone signs it- that’s it. Neither parents nor teachers can change their minds about anything or complain until the next IEP session. There are two in a school year; once in the beginning and again towards the end.
The first one is to just go over the services rendered and see how it’s working. Changes can be made and plans can be modified. You also discuss your child’s educational goals for the end of the year.
The end of year IEP (which is the one we just had) discusses the plans for the next school year. We discussed what Boo would need to succeed in the first grade and our concerns about her being so behind. Now deciding to hold her back is not a part of an IEP, we discussed it none the less. After about three hours, we all decided that keeping her in Kindergarten one more year wouldn’t benefit her. She is not reading or spelling yet, so she will have a Para Pro again that will work with her. We decided that Boo will need a different spelling list from the other kids, one that is simpler. She will continue OT, Speech Therapy, and our goals are to increase her reading and math skills. We also would like to see her only use the Para Pro for 2 hours per day, meaning that she would only need assistance for academics for two hours each day, though if it doesn’t happen that’s ok. The aide will stay as long as needed. And if she needs to be held back in 1st grade, so be it, but My Hawaiian Pineapple and I really want to give her a chance- after all, this could be her “magical” year.
I’m nervous but excited. We are going to enroll her in as many programs as possible like swimming and reading classes. There is also a program called “Fun with Spot” at the local hospital that provides free OT for Autistic and SID children that is about six weeks long. Boo was in it last year and loved it. Her principal also gave me a work at home math book that my step father will help her with over the summer. (I suck at math.)
I haven’t signed off on the IEP yet, because these meetings are so overwhelming, I like to take home the report and give it a good read over. Most parents don’t understand that they can do this- you are not required to sign them at the meeting. You want to make sure you are happy with the plans and goals before you agree to them. And this morning I realized I forgot to have them add her sensory swing, so I will email the school and let them know so they can print a new copy with the sensory swing noted as part of the plan. Then I wills sign it.
IEP’s suck, I hate the meetings especially when it doesn’t go the way I think it should. However this year was the first time I left satisfied and content. Last year it was down right ugly, so much so that I refused to sign, and demanded another IEP with the District Super Intendant present. (Hey, when it’s my daughter’s needs on the line, being uber bitch comes naturally.) I’ve never had a meeting go so smoothly before, and since this is a first it does leave me with the feeling that anything can happen and *just maybe* this will be Boo’s magical year. Then she can advance on to college, become a high power attorney and buy Mum a new house and fancy car.
Ok fine, just keeping up with the other kids in class will make me happy too. Either way, I am just taking joy in the little things.
PS: I am now having My Hawaiian Pineapple proof read my blogs, so if there are any mistakes in this entry, it's his fault. :o)
Monday, May 11, 2009
the list
As parents we are naturally inclined to do whatever it takes to protect our children and shield them from any possible injury or emotional stress. You have your child wear a life jacket when you go to the beach. You hold on to their hands just a little tighter when a stranger gets to close. Kitchen cabinets are locked so they can’t drink harmful liquids. You don’t let your child hang out with other children that you think may be problematic.
But how do you protect your child from natural elements that can so easily turn your child’s body into its own worst enemy?
This is something I have been working through for six years now and here is what I’ve been able to come up aside from the weighted blanket, therapeutic brushing, and music therapy:
Focus on pressure: We have Boo push against walls or heavy furniture. I’m not sure why this works, but it just does.
We have her play with Moonsand. (It’s just fine sand that comes in different colors that you can buy from any place that sells toys or crafts.) This helps with her tactile (touch) sense.
One thing that Boo used to do that would drive me OUT OF MY MIND before she was diagnosed was stick her hands into her cup of juice or milk. She would squish the liquid in between her fingers- I found it repulsive to be honest. We didn’t know that she was having problems with her tactile senses and she would do that to regulate them. Now we give her squishy balls or the occasional packet of toy slime which seem to help.Jedi is now sticking his hands into his or my drinks. It still makes my stomach turn, but now that I understand why it doesn’t bother me as much. So we have him playing with the Moonsand and squishy balls.
Swinging. Who knew basic childhood play could serve as therapy? Boo will swing on a regular swing, but there are sensory swings that seem to really help her. As much as I would like to own one, I cannot afford it. There are two different kinds she uses. The first one looks like an upside down tortoise shell. We place her in it with a weighted blanket and she can either sit up or lie down. Rose or I vigorusly swing her front to back, side to side. The other type that we use is made of a breathable nylon. It encloses Boo tightly (leaving the top open for air to come in) so she can curl up and we push her in the same way as the tortuous shell swing. Boo’s school provides this same swing for her sensory breaks- a trained OT will take her and push her for about 10 or so minutes. When she first started music therapy, she would listen while swinging. Swinging helps work on her vestibular (balance, movement) senses.
Jedi got his new weighted blanket yesterday and loves it. He slept so well, there was very little fussing. I also had him sit facing the wall when he would start to get worked up and I’m still amazed how calming that is for him. Still, there is little else I can do in the moment- until I know what his sensory diet will be I’m just winging it.
A great book to have to get sensory diet ideas is called “The Out of Sync Child Has Fun” by Carol Stock Kranowitz, MA. Its activities specifically designed for SID. I like it because its things you can put together with regular household items and games you can create yourself. This book goes with “The Out Of Sync Child” which explains SID. And if you hate reading like I do, you can get the book on DVD.
I cannot protect my kids from feeling things or noise, but I can teach them best defense they will ever have: the ability to live, thrive, and enjoy it. If I fail at everything else in my life, this is the one thing that I MUST achieve.
Side note: I just happened to read the prior post and I am embarrassed about my half sentences and onslaught of misspellings. I was so fricking tired when I wrote it out and I didn’t think to proof read before I posted it.
But how do you protect your child from natural elements that can so easily turn your child’s body into its own worst enemy?
This is something I have been working through for six years now and here is what I’ve been able to come up aside from the weighted blanket, therapeutic brushing, and music therapy:
Focus on pressure: We have Boo push against walls or heavy furniture. I’m not sure why this works, but it just does.
We have her play with Moonsand. (It’s just fine sand that comes in different colors that you can buy from any place that sells toys or crafts.) This helps with her tactile (touch) sense.
One thing that Boo used to do that would drive me OUT OF MY MIND before she was diagnosed was stick her hands into her cup of juice or milk. She would squish the liquid in between her fingers- I found it repulsive to be honest. We didn’t know that she was having problems with her tactile senses and she would do that to regulate them. Now we give her squishy balls or the occasional packet of toy slime which seem to help.Jedi is now sticking his hands into his or my drinks. It still makes my stomach turn, but now that I understand why it doesn’t bother me as much. So we have him playing with the Moonsand and squishy balls.
Swinging. Who knew basic childhood play could serve as therapy? Boo will swing on a regular swing, but there are sensory swings that seem to really help her. As much as I would like to own one, I cannot afford it. There are two different kinds she uses. The first one looks like an upside down tortoise shell. We place her in it with a weighted blanket and she can either sit up or lie down. Rose or I vigorusly swing her front to back, side to side. The other type that we use is made of a breathable nylon. It encloses Boo tightly (leaving the top open for air to come in) so she can curl up and we push her in the same way as the tortuous shell swing. Boo’s school provides this same swing for her sensory breaks- a trained OT will take her and push her for about 10 or so minutes. When she first started music therapy, she would listen while swinging. Swinging helps work on her vestibular (balance, movement) senses.
Jedi got his new weighted blanket yesterday and loves it. He slept so well, there was very little fussing. I also had him sit facing the wall when he would start to get worked up and I’m still amazed how calming that is for him. Still, there is little else I can do in the moment- until I know what his sensory diet will be I’m just winging it.
A great book to have to get sensory diet ideas is called “The Out of Sync Child Has Fun” by Carol Stock Kranowitz, MA. Its activities specifically designed for SID. I like it because its things you can put together with regular household items and games you can create yourself. This book goes with “The Out Of Sync Child” which explains SID. And if you hate reading like I do, you can get the book on DVD.
I cannot protect my kids from feeling things or noise, but I can teach them best defense they will ever have: the ability to live, thrive, and enjoy it. If I fail at everything else in my life, this is the one thing that I MUST achieve.
Side note: I just happened to read the prior post and I am embarrassed about my half sentences and onslaught of misspellings. I was so fricking tired when I wrote it out and I didn’t think to proof read before I posted it.
Friday, May 8, 2009
"Safe" Place
I wrote this yesterday but didn't have a chance to post it. It was a crazy day!!
The difficult thing about Jedi being diagnosed at two years old with SID is that I now have the daunting task of trying to figure out during a fit which is SID and which is just a regular toddler tantrum. The only way I can go about this is by trial and error.
When I had to do this with Boo, I always felt really guilty when I would reprimand her for something that she couldn’t control, and then feel stupid when she would slide by with normal toddler misbehavior. I don’t know what it is about Jedi, maybe because I don’t think his condition is as severe as Boo’s, but I’m not as worried about it. Maybe it’s just easier to tell with him or maybe I’ve just had enough practice. Who knows?
This morning he had a difficult time waking up. I really don’t know why- he fell asleep fairly early and actually slept all night. There was some fussing here and there, but it never lasted more than a few seconds. Either way, after we got him out of bed he was exhausted and couldn’t stop crying. The crying turned to screaming. He didn’t want to get dressed. He didn’t want to be held. He didn’t want anyone touching him. Nothing. The screaming needed to stop, and every time I try to help him settle down, the screaming got louder.
So I put him in time out. I know that sounds really mean, but he wouldn’t let me touch him and there wasn’t much else I could do. The screaming immediately stopped, but the crying was still really loud. About two minutes later he stopped all together, and he chose to stay in the chair. He actually didn’t want to get out. At first thinking he was just having a tantrum, I walked over to wipe away the tears. He gave me that glazed over look I have seen a million times from Boo. (The same look in the picture at the top of this blog.) This was a sensory fit for sure- but really I didn’t feel bad for giving him the time out. Apparently he needed it because it calmed him right down- and a lot faster than me trying to hold him.
Jedi made it very clear by swatting at me he didn’t want to be touched, so I left him alone. He sat there facing the wall for fifteen minutes. Perfectly still.
After he felt better, he came to me and wanted me to rock, so that’s what he did. This incident really upset Boo, she started crying as I was holding him. So Gerard and I reassured her that Jedi was fine and we are all ok.
The drive to daycare was a quiet one, Boo had perked up by the time we arrived. Jedi was very subdued but walked himself to the center. Of course he had such a rough morning that I leaving was upsetting for him, but fortunately his favorite teacher was there and took him for me. She is absolutely wonderful and he is totally smitten with her so I’m sure he’s fine by now.
I’m just counting down to therapy. My sister is going to make a weighted blanket for him which is really nice of her. So this morning was a step forward as ear piercing as it was, I now know a way to help him calm down even if it appears as a punishment. I’m thinking that when he does have a “terrible two's” tantrum, I should use another form of punishment so he doesn’t confuse the two, that corner is now his “safe” place and I want to keep it that way.
The difficult thing about Jedi being diagnosed at two years old with SID is that I now have the daunting task of trying to figure out during a fit which is SID and which is just a regular toddler tantrum. The only way I can go about this is by trial and error.
When I had to do this with Boo, I always felt really guilty when I would reprimand her for something that she couldn’t control, and then feel stupid when she would slide by with normal toddler misbehavior. I don’t know what it is about Jedi, maybe because I don’t think his condition is as severe as Boo’s, but I’m not as worried about it. Maybe it’s just easier to tell with him or maybe I’ve just had enough practice. Who knows?
This morning he had a difficult time waking up. I really don’t know why- he fell asleep fairly early and actually slept all night. There was some fussing here and there, but it never lasted more than a few seconds. Either way, after we got him out of bed he was exhausted and couldn’t stop crying. The crying turned to screaming. He didn’t want to get dressed. He didn’t want to be held. He didn’t want anyone touching him. Nothing. The screaming needed to stop, and every time I try to help him settle down, the screaming got louder.
So I put him in time out. I know that sounds really mean, but he wouldn’t let me touch him and there wasn’t much else I could do. The screaming immediately stopped, but the crying was still really loud. About two minutes later he stopped all together, and he chose to stay in the chair. He actually didn’t want to get out. At first thinking he was just having a tantrum, I walked over to wipe away the tears. He gave me that glazed over look I have seen a million times from Boo. (The same look in the picture at the top of this blog.) This was a sensory fit for sure- but really I didn’t feel bad for giving him the time out. Apparently he needed it because it calmed him right down- and a lot faster than me trying to hold him.
Jedi made it very clear by swatting at me he didn’t want to be touched, so I left him alone. He sat there facing the wall for fifteen minutes. Perfectly still.
After he felt better, he came to me and wanted me to rock, so that’s what he did. This incident really upset Boo, she started crying as I was holding him. So Gerard and I reassured her that Jedi was fine and we are all ok.
The drive to daycare was a quiet one, Boo had perked up by the time we arrived. Jedi was very subdued but walked himself to the center. Of course he had such a rough morning that I leaving was upsetting for him, but fortunately his favorite teacher was there and took him for me. She is absolutely wonderful and he is totally smitten with her so I’m sure he’s fine by now.
I’m just counting down to therapy. My sister is going to make a weighted blanket for him which is really nice of her. So this morning was a step forward as ear piercing as it was, I now know a way to help him calm down even if it appears as a punishment. I’m thinking that when he does have a “terrible two's” tantrum, I should use another form of punishment so he doesn’t confuse the two, that corner is now his “safe” place and I want to keep it that way.
Monday, May 4, 2009
Calm
Thursday was so messed up. After work I grabbed Boo from Opa’s house and took her for some emergency physical therapy. Rose went down the organized list of everything we need to do for her on a daily basis, and of course, I had forgotten some. Sternly yet kindly, she reminded me that even though Boo isn’t in therapy anymore, I still need to do certain things to make sure her nervous system doesn’t go all haywire. While Katelin was climbing and pushing on heavy beams to regulate herself, Rose and I also discussed what things could help Jedi. So we made what I called the “Sensory Grocery List” which is a ton of expensive stuff that I have to buy since health insurance won’t cover it because there is still debate among the medical community as to whether or not SID is really Autism, if it’s separate from Autism, or if it’s all made up. I’ll get into that another time- there isn’t enough room on this blog for my opinion.
Boo needs to advance in her music therapy. Music therapy is designed help Boo adjust to all the noises she hears and not freak out. For example before she started therapy, I couldn’t run the dishwasher and the washing machine at the same time because even though I couldn’t hear the semi’s driving down the main road, or the guy mowing the lawn a block over, and the radio playing three houses down- she could. All this racket piled on top of anything else she could hear would cause her nervous system to overload and her mind would say to her body, “Stop- shut down.” And she would. She would lie on the floor and not move or talk for a good twenty minutes at a time.
With music therapy, she listens to special cd’s that consist of a variety of music. She has a cd that is Beethoven, and another one called Grape Jamz that is general children’s music. (Row Row Row the Boat, Take Me Out to the Ball Game, etc.) Sound waves are added and removed at certain points of each song and streamed through a special headset that she wears which will rotate the sounds between her ears. During this time, she has to do something active while being hooked up to a cd player. So she colors, writes, works on puzzles- whatever to keep her hands busy. The goal is for her to adjust and be comfortable with the noisy world around her.
Now I need to order three more cd’s, and for Jedi he needs his own weighted blanket. My sister made one for Boo, but she just had a baby so I don’t want to ask her to make another. The cheapest I could find was $65, I’m thinking about checking out E-bay in hopes of finding one less expensive. And then I need to get them each their own hand massager turn on and just hold. The vibration in their hands will help them feel more balanced. However, I learned an important lesson about searching for “hand held massagers” on the internet. I had NO idea it would bring up certain adult things, much less on Amazon.com. And of course, Boo standing right next to me starts asking what every freakishly scary thing that appeared on the moniter is. I quickly shut down and ignored her question.
Boo did really well all weekend, MHP and I made sure to brush her every couple of hours and it really helped.
Both kids came down with the flu, so we can’t do anymore therapy until they feel better. I’m eager to get Jedi started, the kid needs a decent night sleep. Hell, Mommy could use some rest too. I think the sleep deprivation and the stress of everything is really starting to wear me out, I’ve been fighting off headaches for the past week and by 6pm I’m ready to crash. I won’t waive my optimism though- Boo had a minor set back which is a drop in the bucket compared to how much she’s improved. Plus Jedi starts therapy in two weeks which is two weeks closer to a happier toddler. Until then, I will be patient and continue my diet of caffeine and Motrin.
Boo needs to advance in her music therapy. Music therapy is designed help Boo adjust to all the noises she hears and not freak out. For example before she started therapy, I couldn’t run the dishwasher and the washing machine at the same time because even though I couldn’t hear the semi’s driving down the main road, or the guy mowing the lawn a block over, and the radio playing three houses down- she could. All this racket piled on top of anything else she could hear would cause her nervous system to overload and her mind would say to her body, “Stop- shut down.” And she would. She would lie on the floor and not move or talk for a good twenty minutes at a time.
With music therapy, she listens to special cd’s that consist of a variety of music. She has a cd that is Beethoven, and another one called Grape Jamz that is general children’s music. (Row Row Row the Boat, Take Me Out to the Ball Game, etc.) Sound waves are added and removed at certain points of each song and streamed through a special headset that she wears which will rotate the sounds between her ears. During this time, she has to do something active while being hooked up to a cd player. So she colors, writes, works on puzzles- whatever to keep her hands busy. The goal is for her to adjust and be comfortable with the noisy world around her.
Now I need to order three more cd’s, and for Jedi he needs his own weighted blanket. My sister made one for Boo, but she just had a baby so I don’t want to ask her to make another. The cheapest I could find was $65, I’m thinking about checking out E-bay in hopes of finding one less expensive. And then I need to get them each their own hand massager turn on and just hold. The vibration in their hands will help them feel more balanced. However, I learned an important lesson about searching for “hand held massagers” on the internet. I had NO idea it would bring up certain adult things, much less on Amazon.com. And of course, Boo standing right next to me starts asking what every freakishly scary thing that appeared on the moniter is. I quickly shut down and ignored her question.
Boo did really well all weekend, MHP and I made sure to brush her every couple of hours and it really helped.
Both kids came down with the flu, so we can’t do anymore therapy until they feel better. I’m eager to get Jedi started, the kid needs a decent night sleep. Hell, Mommy could use some rest too. I think the sleep deprivation and the stress of everything is really starting to wear me out, I’ve been fighting off headaches for the past week and by 6pm I’m ready to crash. I won’t waive my optimism though- Boo had a minor set back which is a drop in the bucket compared to how much she’s improved. Plus Jedi starts therapy in two weeks which is two weeks closer to a happier toddler. Until then, I will be patient and continue my diet of caffeine and Motrin.
Thursday, April 30, 2009
relapse
As if I couldn’t be kicked anymore in the stomach with Jedi’s diagnosis of SID, Boo had a MAJOR setback this morning. I should have seen it coming- last night she was so hyper and all over the place. That is a sign of a sensory episode for Boo.
This morning we woke her up. She was farting around and I couldn’t get her to get dressed, she was more concerned about showing me random stuff that made no sense, like the wrist pad that goes to Jedi’s Leap Frog game board.
Finally she went upstairs and Gerard picked out jeans and a long sleeve shirt since we were now running late. Not noticing that Boo was starting to panic, Gerard pulled the shirt over her head and rushed her back downstairs. By the time her foot hit the bottom step, tears were streaming down her cheeks. Her eyes were lost and glazed, her body shaking. She was trying to say something, but her voice was trembling so much I couldn’t make it out.
Whether it be that I was not quite awake yet myself, or in such a rush to get out the door, or even that I have been a little under the weather all week- my small brain misunderstood the situation that I have handled thousands of times before and lost patience.
I scolded her for the tantrum.
She made direct eye contact me and it registered. Dammit! How could I be so stupid!? And there she was, sobbing uncontrollably- lost somewhere in her own mind, out of touch, out of sync.
I went to reach for her in attempts to bring her back and give her the comfort that only a mother could give, and she began to tear off her shirt. Scratching the sleeves, tugging on the front, sobbing loudly, the feel of the material felt to her what sandpaper would feel to us. Imagine: sandpaper rubbing against your arms, chest, back, and stomach and you can’t make it stop. Now you know what Boo feels when she can’t regulate her senses.
Before I would offer to brush or change her shirt, I needed to calm her down.
(Brushing: A form of therapy that helps a child regulate their sense of touch. There is a therapeutic brush made just for this, it is usually small and round. The bristles are very fine and soft. You brush the child’s arms and legs in long strokes like painting, moving from each arm and leg without the brush leaving the body. However you must avoid brushing the back or chest- I can’t remember why, something about the nerves. Anyway, when the brushing is done, you do joint compressions in reps of ten: Wrist to elbow-elbow to shoulder-ankle to knee-knee to hip. However this type of brushing should not be done without proper training.)
When Boo is in this state, the only thing that will calm her down is to use deep compression. We have a weighted blanket that my sister made for her that usually works, but I didn’t have time to run upstairs and grab it. Instead, I swept her up in my arms and took her out on the front porch. The sun was rising and the air was cool, the breeze felt fresh and crisp against my face. I sat down in the rocking chair and held her as tightly as I could. We rocked. I held her tight and rocked hard. After reassuring her that I loved her and she is okay, her body relaxed. The crying stopped. She was coming back to me. “The chair is squeaking” she whispered.
My ride had already pulled up in the driveway and was patiently waiting for me. Gerard, now very late, waved me over to put Boo in the car. The minute I buckled her in, she started sobbing again. I didn’t hold her long enough. But I couldn’t stay. I was torn between my job and my child. Gerard told me to go and he would take care of it.
With feelings of defeat and guilt flowing through me like a thorny vine, I quietly cried the entire way to work.
Gerard called me on my cell and said that he dropped Jedi off at daycare and took Boo back home to change. He had her change into a loose cotton dress and then took her over to Opa’s house. (Her grandfather.) On the way over, Gerard said Boo apologized profusely, which only means she completely understands what’s going on and doing everything in her power to keep control. It also makes me feel bad because she feels guilty when she can’t maintain control when she so desperately wants too.
I called Opa later on in the morning to see how she was, and he told me that she had banged on the piano loudly for a few minutes (another sign of sensory overload) and then just stopped and spent the rest of the morning in his sitting room working on puzzles. It was agreed that she was in no condition for school today.
I’m taking her to see Rose- her OT tonight for some therapy. It looks like she’ll have to start going back each week. I'm completely crushed.
This morning we woke her up. She was farting around and I couldn’t get her to get dressed, she was more concerned about showing me random stuff that made no sense, like the wrist pad that goes to Jedi’s Leap Frog game board.
Finally she went upstairs and Gerard picked out jeans and a long sleeve shirt since we were now running late. Not noticing that Boo was starting to panic, Gerard pulled the shirt over her head and rushed her back downstairs. By the time her foot hit the bottom step, tears were streaming down her cheeks. Her eyes were lost and glazed, her body shaking. She was trying to say something, but her voice was trembling so much I couldn’t make it out.
Whether it be that I was not quite awake yet myself, or in such a rush to get out the door, or even that I have been a little under the weather all week- my small brain misunderstood the situation that I have handled thousands of times before and lost patience.
I scolded her for the tantrum.
She made direct eye contact me and it registered. Dammit! How could I be so stupid!? And there she was, sobbing uncontrollably- lost somewhere in her own mind, out of touch, out of sync.
I went to reach for her in attempts to bring her back and give her the comfort that only a mother could give, and she began to tear off her shirt. Scratching the sleeves, tugging on the front, sobbing loudly, the feel of the material felt to her what sandpaper would feel to us. Imagine: sandpaper rubbing against your arms, chest, back, and stomach and you can’t make it stop. Now you know what Boo feels when she can’t regulate her senses.
Before I would offer to brush or change her shirt, I needed to calm her down.
(Brushing: A form of therapy that helps a child regulate their sense of touch. There is a therapeutic brush made just for this, it is usually small and round. The bristles are very fine and soft. You brush the child’s arms and legs in long strokes like painting, moving from each arm and leg without the brush leaving the body. However you must avoid brushing the back or chest- I can’t remember why, something about the nerves. Anyway, when the brushing is done, you do joint compressions in reps of ten: Wrist to elbow-elbow to shoulder-ankle to knee-knee to hip. However this type of brushing should not be done without proper training.)
When Boo is in this state, the only thing that will calm her down is to use deep compression. We have a weighted blanket that my sister made for her that usually works, but I didn’t have time to run upstairs and grab it. Instead, I swept her up in my arms and took her out on the front porch. The sun was rising and the air was cool, the breeze felt fresh and crisp against my face. I sat down in the rocking chair and held her as tightly as I could. We rocked. I held her tight and rocked hard. After reassuring her that I loved her and she is okay, her body relaxed. The crying stopped. She was coming back to me. “The chair is squeaking” she whispered.
My ride had already pulled up in the driveway and was patiently waiting for me. Gerard, now very late, waved me over to put Boo in the car. The minute I buckled her in, she started sobbing again. I didn’t hold her long enough. But I couldn’t stay. I was torn between my job and my child. Gerard told me to go and he would take care of it.
With feelings of defeat and guilt flowing through me like a thorny vine, I quietly cried the entire way to work.
Gerard called me on my cell and said that he dropped Jedi off at daycare and took Boo back home to change. He had her change into a loose cotton dress and then took her over to Opa’s house. (Her grandfather.) On the way over, Gerard said Boo apologized profusely, which only means she completely understands what’s going on and doing everything in her power to keep control. It also makes me feel bad because she feels guilty when she can’t maintain control when she so desperately wants too.
I called Opa later on in the morning to see how she was, and he told me that she had banged on the piano loudly for a few minutes (another sign of sensory overload) and then just stopped and spent the rest of the morning in his sitting room working on puzzles. It was agreed that she was in no condition for school today.
I’m taking her to see Rose- her OT tonight for some therapy. It looks like she’ll have to start going back each week. I'm completely crushed.
Wednesday, April 29, 2009
Intro
Once thinking that we were reaching the end of a long hard road- finally being able to enjoy the rewards of almost four years Mondays spent in occupational therapy and letting Boo enjoy her new found childhood to the fullest- my son is now displaying signs of SID. The number two is now a wretched-horrible-rotten number in my mind. It’s the make or break age for my children as to whether or not they will be able to handle their own bodies along with the feelings and sounds of the world they have been thrusted into.
Being completely beside myself, but not all that surprised at the same time I’ve decided to publicly document my children’s struggles with Sensory Integration Dysfunction. I do not consider myself an expert on this by far I am still trying to sort it all out.
If you have never heard of Sensory Integration Dysfunction, the technical meaning according to Wikipedia is:
“Sensory Integration Dysfunction (SID, also called sensory processing disorder) is a neurological disorder causing difficulties with processing information from the five (vision, auditory, touch, olfaction, and taste), the sense of movement (vestibular system), and/or the positional sense (proprioception). For those with SID, sensory information is sensed, but perceived abnormally. Unlike blindness or deafness, sensory information is received by people with SID; the difference is that information is processed by the brain in an unusual way that may cause distress or confusion.”
For more explanation, visit http://en.wikipedia.org/wiki/Sensory_Integration_Dysfunction.
I’ve blogged about how we discovered Boo’s SID which was such traumatic experience for all involved. If you would like to read this story, please click here.
One of the frustrating aspects of when Gerard and I were trying to figure out what was going on with Boo, and we finally got an actual diagnosis for her- few people believed us. Many friends and family said, “She seems fine, it’s just her speech that seems to be a problem.” What I’ve learned is that many kids who have SID have problems with speech or anything cognitive. She was spending so much time trying to regulate her senses that she couldn’t focus on talking. Boo is now six years old, and she is doing so much better with her speech. She is still two years behind as far as how well she can speak and her level of learning, but she’s getting there.
Jedi as I said is now two. My “motherly” instincts have been nagging me for a while and learning from Boo, I started taking action. And like the situation before, no one believes me and says, “Well he’s just not talking yet. He’s only two, he’ll start when he’s ready.”
Well I heard THAT before.
The signs I’m seeing are:
Little to no language
Easily agitated or angered
Unable to sleep at night
When he’s upset he can’t calm himself down, he starts arching his back and clenching his fists while screaming.
Consistent nightmares that send him into a rage- kicking and screaming. It takes an incredibly long time to calm him down when this happens.
I had him tested for speech, and the woman that worked with him feels that he may have some other cognitive issues but I disagree. To me, his only issue in that area is speech. He does very well with following directions. Jedi is good with puzzles, blocks, and taking things apart then putting them back together. He can identify letters, shapes, pretty much everything we point out to him. He even knows a small amount of sign language. I feel his sensory issues are mainly vestibular and proprioception.
I am in the process of requesting and IEP for him to see what other services he qualifies for. Jedi started speech therapy about a month or two ago but hasn’t made much progress. I’ve spoken to Boo’s Occupational Therapist and she would like to assess Jedi and start a sensory diet for him. It will be next month before he is really able to start, so in the meantime I will work on referrals from his pediatrician and getting insurance set up.
My goal for this blog is to document the kid’s journey as they struggle to find comfort in themselves and try to keep up with the demands society makes on all children to succeed with incredible expectations. This is also my place to vent frustration, celebrate all accomplishments no matter how small they are, and hopefully network with others that have children with autism or any type of disability. Even if you don’t fall under these categories, I would love for you to follow along and watch them grow with me.
Being completely beside myself, but not all that surprised at the same time I’ve decided to publicly document my children’s struggles with Sensory Integration Dysfunction. I do not consider myself an expert on this by far I am still trying to sort it all out.
If you have never heard of Sensory Integration Dysfunction, the technical meaning according to Wikipedia is:
“Sensory Integration Dysfunction (SID, also called sensory processing disorder) is a neurological disorder causing difficulties with processing information from the five (vision, auditory, touch, olfaction, and taste), the sense of movement (vestibular system), and/or the positional sense (proprioception). For those with SID, sensory information is sensed, but perceived abnormally. Unlike blindness or deafness, sensory information is received by people with SID; the difference is that information is processed by the brain in an unusual way that may cause distress or confusion.”
For more explanation, visit http://en.wikipedia.org/wiki/Sensory_Integration_Dysfunction.
I’ve blogged about how we discovered Boo’s SID which was such traumatic experience for all involved. If you would like to read this story, please click here.
One of the frustrating aspects of when Gerard and I were trying to figure out what was going on with Boo, and we finally got an actual diagnosis for her- few people believed us. Many friends and family said, “She seems fine, it’s just her speech that seems to be a problem.” What I’ve learned is that many kids who have SID have problems with speech or anything cognitive. She was spending so much time trying to regulate her senses that she couldn’t focus on talking. Boo is now six years old, and she is doing so much better with her speech. She is still two years behind as far as how well she can speak and her level of learning, but she’s getting there.
Jedi as I said is now two. My “motherly” instincts have been nagging me for a while and learning from Boo, I started taking action. And like the situation before, no one believes me and says, “Well he’s just not talking yet. He’s only two, he’ll start when he’s ready.”
Well I heard THAT before.
The signs I’m seeing are:
Little to no language
Easily agitated or angered
Unable to sleep at night
When he’s upset he can’t calm himself down, he starts arching his back and clenching his fists while screaming.
Consistent nightmares that send him into a rage- kicking and screaming. It takes an incredibly long time to calm him down when this happens.
I had him tested for speech, and the woman that worked with him feels that he may have some other cognitive issues but I disagree. To me, his only issue in that area is speech. He does very well with following directions. Jedi is good with puzzles, blocks, and taking things apart then putting them back together. He can identify letters, shapes, pretty much everything we point out to him. He even knows a small amount of sign language. I feel his sensory issues are mainly vestibular and proprioception.
I am in the process of requesting and IEP for him to see what other services he qualifies for. Jedi started speech therapy about a month or two ago but hasn’t made much progress. I’ve spoken to Boo’s Occupational Therapist and she would like to assess Jedi and start a sensory diet for him. It will be next month before he is really able to start, so in the meantime I will work on referrals from his pediatrician and getting insurance set up.
My goal for this blog is to document the kid’s journey as they struggle to find comfort in themselves and try to keep up with the demands society makes on all children to succeed with incredible expectations. This is also my place to vent frustration, celebrate all accomplishments no matter how small they are, and hopefully network with others that have children with autism or any type of disability. Even if you don’t fall under these categories, I would love for you to follow along and watch them grow with me.
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