Its been a long while since I wrote anything on this blog, so I figured it was the perfect place to start getting stuff outta my head. There are always so many thought going on inside my head at any given moment that sometimes I dont even know what is a thought of my own.
So, the first big thought is that the school year is coming to a close. We have meetings & hearing & vision screenings & placement information all to gather. Its really starting to hit me that this is real. I am really going to do this. I am. It still sounds crazy to me though.
The very idea that homeschooling a special needs child would be easy is only an idea in a crazy person's head. I know it will be hard. A huge fight & struggle for the first year, but one can hope for some smooth raods. So far, just getting out of the school environment is proving to be difficult.
ANother ridiculous thought that is floating around in my head is that somehow he will fall even farther behind than he already is. Im not a very organized person (to say the least) and I have serious patience issues toward the end of the day. I just hope we can work it all out.
On the flip side, it will be nice to just pick up & go to Disney in October. It will be nice to not have to explain to a school & a teacher why mini isn't at school several days a month. It gets tiring to explain to anybody his digestive issues.
Well, for now, thats the only subject I want to hit on, but I'm thinking I'm going to make this much more regular. Even if it is just a bunch of me rambling. :0)
Thursday, May 19, 2011
Saturday, December 6, 2008
Words, sweet words!!!
So, we started Methyl B-12 shots on Dec 3rd. Everything I have read stated that we would see a difference within 24-48 hours ... or within that time frame. The next day at school Hayden's teachers seen language improvements with multiple 2 and 3-words sentences. Well, today we were sitting on the couch reading him books and he came up to us and brought us "Go Dog Go" to read. He flipped to the first page and said Go Dog! He proceeded to flip the page and then say doggie bikey, go! He flipped to the next page and said Buggie. The next page had a boat - he said boat. The next a car - he said car. He just kept flipping pages and while he was "reading" to us what was happening in the pages he showed total emotion with it. He almost acted it out. When he got the the last page (the book is about 12-14 pages long) he started singing the tune I sing for the "Dog Party" and do the flapping motion with the book that I always do for him! Not only was he reading for me, but he also sang for the first time ever!
My eyes welled up with tears and I just grabbed him and hugged him so tight! I couldn't believe it. I had to look at my husband and ask him if he had seen what I had just seen too. About 20 minutes passed and sure enough Hayden brought the same book back and went through it and did it again - exactly the same way, but with more articulation on the words and more excitement! I am just overjoyed! I can't believe after 1 shot we are seeing this huge improvement!
The second shot is tonight so hopefully we will see even bigger improvement throughout the week! I can only pray that this is the beginning of something beautiful!!!
My eyes welled up with tears and I just grabbed him and hugged him so tight! I couldn't believe it. I had to look at my husband and ask him if he had seen what I had just seen too. About 20 minutes passed and sure enough Hayden brought the same book back and went through it and did it again - exactly the same way, but with more articulation on the words and more excitement! I am just overjoyed! I can't believe after 1 shot we are seeing this huge improvement!
The second shot is tonight so hopefully we will see even bigger improvement throughout the week! I can only pray that this is the beginning of something beautiful!!!
Wednesday, November 5, 2008
Going to see doctors ...
Well, Monday we went to our pediatrician for a rash that had developed down Hayden's side. I thought at first it was a yeast rash by the way it had popped up, but as the days went on I wasn't as sure. It moved to his belly, so I needed to have it checked it. From the moment we walked in the door of the office at 2:50pm he was unhappy and uncooperative.
We sat in the back in a an exam room for exactly 45 minutes without anyone seeing us all the while he grew more and more upset. He started getting hot, hyper, anxious, tired, and uncontrollable. When Hayden gets this upset he starts to harm himself (head-banging, biting, and pinching). I attempted to control him with a "time-out" and a book on the chair next to me - not having it. Then, he flipped out! On a scale of 1-10, he was at a 20! I'm sure every parent in the place thought he was being murdered.
Finally, the doctor came in. She looked at me holding him in my lap and asked me what was going on. I told her I was keeping him from hitting himself or me. I then explained to her (through the screaming) that he had a rash and attempted to show it to her. As soon as we lifted his shirt and she asked me to let go of his arm he went to slapping and punching! I grabbed his arm again. She told me the rash was a virus, not yeast and she offered us a cream that I turned down because she said it doesn't do much for the rash. I'll use Epsom Salt - thanks!
Well, she walked out of the room to get me "information" about the rash that said he could attend school still with it and when she walked back in the door to give me the info she witnessed him punched me in the face. He busted my lip. She scooped him out of my arms, put him on the exam table, yelled for a nurse, and told me to "get out-leave". I was in shock and did just that. I don't know why, but I did. I went into the next room.
She came in a few seconds later - I was bawling my eyes out and bleeding - and she asked me if I was okay. I just laughed at her. Then she asked how she could help me. I asked for heavy metal testing and her to not fight me when I research something, be open-minded and give me an honest "medical" view-point of what I find. She agreed. For the first time I felt like she really cared about my son - even if it were for just a moment. So, we are getting heavy metal testing - copper, aluminum, mercury, and lead. Covered by insurance! :0)
When I got home, I called a DAN! doctor in the next town over. They usually have a 2-3 month wait to get in, but low and behold, we are seeing her on the 20th of this month! It's $300 out-of-pocket, but I hear it is worth that and then some! I am ecstatic to get in that fast and can't wait to start that testing for systemic yeast, B12 deficiency, and other stuff. I have so much that I want to ask about the post-natal steroids (Dexamethasone) that Hayden got in the NICU that I am reading eats holes in these kids intestines and stomach and I just am overwhelmed.
I will update once we have seen the DAN! doctor and let you know how it goes from there!
We sat in the back in a an exam room for exactly 45 minutes without anyone seeing us all the while he grew more and more upset. He started getting hot, hyper, anxious, tired, and uncontrollable. When Hayden gets this upset he starts to harm himself (head-banging, biting, and pinching). I attempted to control him with a "time-out" and a book on the chair next to me - not having it. Then, he flipped out! On a scale of 1-10, he was at a 20! I'm sure every parent in the place thought he was being murdered.
Finally, the doctor came in. She looked at me holding him in my lap and asked me what was going on. I told her I was keeping him from hitting himself or me. I then explained to her (through the screaming) that he had a rash and attempted to show it to her. As soon as we lifted his shirt and she asked me to let go of his arm he went to slapping and punching! I grabbed his arm again. She told me the rash was a virus, not yeast and she offered us a cream that I turned down because she said it doesn't do much for the rash. I'll use Epsom Salt - thanks!
Well, she walked out of the room to get me "information" about the rash that said he could attend school still with it and when she walked back in the door to give me the info she witnessed him punched me in the face. He busted my lip. She scooped him out of my arms, put him on the exam table, yelled for a nurse, and told me to "get out-leave". I was in shock and did just that. I don't know why, but I did. I went into the next room.
She came in a few seconds later - I was bawling my eyes out and bleeding - and she asked me if I was okay. I just laughed at her. Then she asked how she could help me. I asked for heavy metal testing and her to not fight me when I research something, be open-minded and give me an honest "medical" view-point of what I find. She agreed. For the first time I felt like she really cared about my son - even if it were for just a moment. So, we are getting heavy metal testing - copper, aluminum, mercury, and lead. Covered by insurance! :0)
When I got home, I called a DAN! doctor in the next town over. They usually have a 2-3 month wait to get in, but low and behold, we are seeing her on the 20th of this month! It's $300 out-of-pocket, but I hear it is worth that and then some! I am ecstatic to get in that fast and can't wait to start that testing for systemic yeast, B12 deficiency, and other stuff. I have so much that I want to ask about the post-natal steroids (Dexamethasone) that Hayden got in the NICU that I am reading eats holes in these kids intestines and stomach and I just am overwhelmed.
I will update once we have seen the DAN! doctor and let you know how it goes from there!
Saturday, October 25, 2008
Starting the diet!
So for the last few weeks I have been doing a ton of research about the Gluten-free/Casein-free/MSG-free/Dye-free diet for Hayden. We know Hayden is completely addicted to Gluten and has really bad reactions of aggression and hyperactivity with MSG and Dyes, especially Red40.Today, we started. I will be journaling here occasionally to update his progress on the diet and any changes in his behavior and sensory issues.
We decided not to cut out Casein for the first 2 weeks, but we did lower the intake of Casein, but totally cut out the other 3. So far today we have seen some involuntary facial movements - like he's tensing his muscles and almost like what you would see in a person going through withdrawls from Cocaine. A lot with the mouth and cheeks, and some with his eyes.
His behaviour has been a bit off, mostly more juvenile and whiny, but no over-baring. His urine smells just like yeast. It's so gross and breath-taking. He did sleep better for his nap - a solid 3 hours with very little motion. I was in shock! Good shock!
I guess my biggest concern was that he wouldn't eat the foods and would starve for a couple of days, but so far he has eaten at every meal. He is taking Organic Plant Enzymes with lunch and dinner and a yeast-killing multi-vitamin with lunch and so far he has done very well with both of them and we started them 3 days ago.
All-in-all I am SO proud of my little man! He is so much stronger than I give him credit for!
We decided not to cut out Casein for the first 2 weeks, but we did lower the intake of Casein, but totally cut out the other 3. So far today we have seen some involuntary facial movements - like he's tensing his muscles and almost like what you would see in a person going through withdrawls from Cocaine. A lot with the mouth and cheeks, and some with his eyes.
His behaviour has been a bit off, mostly more juvenile and whiny, but no over-baring. His urine smells just like yeast. It's so gross and breath-taking. He did sleep better for his nap - a solid 3 hours with very little motion. I was in shock! Good shock!
I guess my biggest concern was that he wouldn't eat the foods and would starve for a couple of days, but so far he has eaten at every meal. He is taking Organic Plant Enzymes with lunch and dinner and a yeast-killing multi-vitamin with lunch and so far he has done very well with both of them and we started them 3 days ago.
All-in-all I am SO proud of my little man! He is so much stronger than I give him credit for!
Saturday, September 6, 2008
Thursday, September 4, 2008
Leapin' Ahead!
So, I couldn't resist posting a 2nd post today to let you all in on a great developmental toy that we received. It is by Leapfrog and is called the Little Leaps. It's this totally interactive gaming system that works through your DVD player. The best part ... it's cordless! The age range starts at 9 months and goes up. It says it cuts off at 36 months, but since Hayden is so developmentally delayed he is right smack in the middle and LOVES this system.
Tonight, while I was cleaning and cooking dinner, he played that game for 2 hours straight. Normally, I wouldn't allow that long in front of the TV, but he was just inthralled! You could hear him a block away screaming out answers and pressing buttons and getting so excited about it! I just want to run out and buy every DVD that comes with this system.
Needless to say, I am impressed! :0) I was skeptical that it would be way too young for him and pleasantly suprised that it's not! Picture included just in case anyone wants to run out and buy one!
Risperdol
So, we started a new medication a few days before school started to try to help Hayden focus and also to help him not have so many compulsive head-banging sessions a day. The new medication is called Risperdol and is primarily used to treat bi-polar disorder in adults and teens. It has recently been used in younger children that have autism spectrum disorders or spectrum-related disorders to help cope with compulsive behaviors.
Now that he has been on it for 2 weeks, I am really seeing a difference. We skipped one day of the medication and it was like a different child was living in my house. He had meltdown after meltdown and was so busy and unfocused I didn't know what way to turn. All I can say is I am very happy with the Risperdol.
Usually, I don't use prescription medications for Hayden. I do my very best to steer clear due to side-effects and dependancy issues. After reading up on Risperdol it shows that the main side-effect is weight gain. Well, as the parent of a child with Sensory Integration Disorder I can tell you that weight gain is a struggle for us. Because Hayden has sensory issues he is at the bottom of the growth curve, so bring on the weight gain! I am actually excited to see him eat!
With that in mind last night we treated him to McDonalds ... I know, I know! He ate all of his chicken nugget happy meal and two additional nuggets from my meal, so we are certainly eating! :0) Happy boy = Happy mommy! I will keep you posted on how the meds continue to work!
Now that he has been on it for 2 weeks, I am really seeing a difference. We skipped one day of the medication and it was like a different child was living in my house. He had meltdown after meltdown and was so busy and unfocused I didn't know what way to turn. All I can say is I am very happy with the Risperdol.
Usually, I don't use prescription medications for Hayden. I do my very best to steer clear due to side-effects and dependancy issues. After reading up on Risperdol it shows that the main side-effect is weight gain. Well, as the parent of a child with Sensory Integration Disorder I can tell you that weight gain is a struggle for us. Because Hayden has sensory issues he is at the bottom of the growth curve, so bring on the weight gain! I am actually excited to see him eat!
With that in mind last night we treated him to McDonalds ... I know, I know! He ate all of his chicken nugget happy meal and two additional nuggets from my meal, so we are certainly eating! :0) Happy boy = Happy mommy! I will keep you posted on how the meds continue to work!
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