tag:blogger.com,1999:blog-69364459359810277672024-02-07T10:21:24.218-08:00My Autism StoryIt has been a year since we first discovered Kobe had autism and I felt like sharing what we went through and are still going through.Taliahttp://www.blogger.com/profile/15012925989722254073noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-6936445935981027767.post-11126798537075172232011-04-04T22:04:00.001-07:002011-04-04T22:42:25.402-07:00hmmm...I thought everybody had heard<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8bRe9O6zHnJDmonFoh5LYAdkTReC9L16asaQHxVXF-cdsVyihNHf7tkIoEi9GcikuyGN2uLp1UIKifDd4vlvVtgD0nssKIsqMI-MMAn1NfNg5Rr97ukjO-oRQrUreEUwjUjpMLCBBEdU/s1600/DSCN0961.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8bRe9O6zHnJDmonFoh5LYAdkTReC9L16asaQHxVXF-cdsVyihNHf7tkIoEi9GcikuyGN2uLp1UIKifDd4vlvVtgD0nssKIsqMI-MMAn1NfNg5Rr97ukjO-oRQrUreEUwjUjpMLCBBEdU/s320/DSCN0961.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5591968133878337922" /></a>
<div style="text-align: center;">apparently not, well Have you heard?</div><div style="text-align: center;">
</div><div style="text-align: center;">Oh well o bird bird bird. bird is the word</div><div style="text-align: center;">well bird bird bird, bird is the word</div><div style="text-align: center;">Don't you know about the bird,</div><div style="text-align: center;"> everyone knows that the bird is the word!!!!!</div><div style="text-align: center;">
</div><div style="text-align: center;">I couldn't resist re-enacting a family guy scene that also includes </div><div style="text-align: center;">one of my kids favorite songs by the <i>Ramones</i> </div><div style="text-align: center;">
</div><div style="text-align: center;">Well the thing is;{<span class="Apple-style-span" >say this next part like Oprah would</span>} </div><div style="text-align: center;"><b><span class="Apple-style-span" >I<span class="Apple-style-span" >t's Autism Awareness Month!!! </span></span></b>{<span class="Apple-style-span" >pause for applause here</span>}</div><div style="text-align: center;">{Go on clap}</div><div style="text-align: center;">
</div><div style="text-align: center;">There are all sorts of things going on and things to get involved in even in lil ol Cedar City.</div><div style="text-align: center;">I chose to light it up BLUE and BLUE my house Friday night and it's staying all month long.</div><div style="text-align: center;">I also blue my lamp in my room, now I can't get rid of Kobe. </div><div style="text-align: center;">Since he's sick and sleeping in my room he has free range to come in and out as he pleases. So last night at about 3am he decided to take a bath. he filled the tub, took of his jammies, and his diaper. He soaked in the tub till he felt rejuvenated i guess, cause when I woke up this morning he was laying next to me completely naked. That is not how I left him and the bathroom had been vandalized and the vandals left the agua in the tub.</div><div style="text-align: center;">
</div><div style="text-align: center;">Some sites to find out more local info info are:</div><div style="text-align: center;"><a href="http://www.southernutahautism.blogspot.com/">Southern Utah Autism</a></div><div style="text-align: center;"><a href="http://autismcouncilofutah.org/get-involved/events/">Autism Council of Utah</a></div><div style="text-align: center;">
</div><div style="text-align: center;">And for nationwide here are some</div><div style="text-align: center;"><a href="http://www.autismspeaks.org/">http://www.autismspeaks.org/</a></div><div style="text-align: center;"><a href="http://www.lightitupblue.org/">http://www.lightitupblue.org/</a></div><div style="text-align: center;"><a href="http://www.hollyrod.org/">http://www.hollyrod.org/</a></div><div style="text-align: center;">
</div><div style="text-align: center;">Thanks for caring enough about autism just by reading this post, If you go further than that, I will make out with you ;)</div>Taliahttp://www.blogger.com/profile/15012925989722254073noreply@blogger.com0tag:blogger.com,1999:blog-6936445935981027767.post-89696925700867699322011-01-25T00:07:00.000-08:002011-01-31T18:32:41.068-08:00Weekend Update With Kobe and Talia<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7Uid1eGsHFwSuEgQNk4M7qqxxVtO7K-5TZYlq52TSqPJm0itlW8ToYCvCo3yJk2jufcJd3vxcV-Cbse1GfAm6BJ4UX7LJegu7eibphDpXJfBOOKy19lSMTO5uE4Y6bhg4Qp1K9FQCFQI/s1600/K2.0.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 253px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7Uid1eGsHFwSuEgQNk4M7qqxxVtO7K-5TZYlq52TSqPJm0itlW8ToYCvCo3yJk2jufcJd3vxcV-Cbse1GfAm6BJ4UX7LJegu7eibphDpXJfBOOKy19lSMTO5uE4Y6bhg4Qp1K9FQCFQI/s320/K2.0.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5568543385980158850" /></a>
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<div style="text-align: center;">Wow it's been a while, a lot has happened in Kobe's world of Autism. </div><div style="text-align: center;">We are now a single parent family, which is hard on therapy(time wise). I feel like a terrible mother for not having more time to spend one on one with Kobe doing his ABA and PRT therapies with him. I have a great family who helps me immensely, however when the other kids want me, what do you do?</div><div style="text-align: center;">I'm the only one in the house who knows how to do his therapies. I hope that soon we will have a therapist come to the house and help. </div><div style="text-align: center;">I know that we were getting a lot of hours of therapy time in AZ, plus the diets, and SARRC was a lot closer. I had zero time for myself. I know a lot of moms say that, but I really didn't. I had 3 kids in 3 years(not planned), the oldest has Autism(also not planned). My husband was in grad school and worked full time (plus had his social life, and girls on the side)(really not planned). </div><div style="text-align: center;">
</div><div style="text-align: center;">I was alone, not alone alone. I had my kids, and other than the therapists, I had nobody. All Kobe's success's and non success's fell on to me. I could only do so much and be so many places. I had almost no friends there, I didn't have time for them. I didn't have any sort of a support system. somewhere I lost who I was, I stopped going to church. it was too hard by myself. I was unhappy with everyone around me and mean and angry if everything didn't go as planned. I needed control over something.I decided it would be food. I only bought foods that were organic, all gluten/casein free, also no artificial colors or flavors or preservatives. No high fructose corn syrup, no corn, no carbs and no/low sugars. Everything had to be natural and fresh. My kids are picky eaters, wouldn't eat it. I would fight with them every single meal! It was exhausting, to say the least.<span class="Apple-tab-span" style="white-space:pre"> </span></div><div style="text-align: center;"><span class="Apple-tab-span" style="white-space:pre">
</span></div><div style="text-align: center;"> I hope someday I have it all. The wonderful support system I have here in Cedar, and the awesome therapists who work so hard with Kobe like we had in AZ. </div><div style="text-align: center;">Since May, when I finally left Jed, I have slacked off as far as Autism goes. I finally got myself to a place that I am now officially 100% happy. I hope now I can move on and get Kobe the help he needs. So far he has been doing great at preschool. He loves it so much. He has also learned to follow a simple task, and that is "throw away in the trash" You might think its an easy one to learn or teach, but you are mistaken. To say that he loves or oranges would be a bit of an understatement govnah! He peels oranges and throws them wherever he feels like it. I have to follow him around the house cleaning up. I finally got fed up and decided he needed to learn to peel them over the garbage. He has finally mastered it! WHOO HOO!</div><div style="text-align: center;">
</div><div style="text-align: center;">We are still in the drug study and were going to Phx once every month, but now we only have to go once every 3 months. I was going to ask to transfer to a place closer, but I love Dr. Melmed, Nurse Janet, Sharmin and Sarah so much! They have helped so so much with more than just the drug trial. I wish they would all just move to Cedar, but then I wouldn't have a reason to get out of town and into the city as often. I love Cedar so much, but sometimes this place seems so small</div>Taliahttp://www.blogger.com/profile/15012925989722254073noreply@blogger.com2tag:blogger.com,1999:blog-6936445935981027767.post-17104540783979481012010-06-05T09:23:00.000-07:002010-06-05T09:54:47.081-07:00Almost Finished<div style="text-align: center;">Kobe does so much better when we are Utah. I don't know if it's because of the altitude change and the thinner air, or the better oxygen from all the trees, or if it's the less toxins in the air. Maybe he just likes being around a lot of people. I think it's a combo of all of these things. A lot of parents of autistic kids say they notice a change when they go to the <span class="blsp-spelling-error" id="SPELLING_ERROR_0">mtns</span>. The movie <span style="font-style: italic;">The Horse Boy</span> is that sort of thing. They took their son to Mongolia for a Shaman healing trek, they think it was the Shaman healing, I think it was the climate change. I wish we could move back. We would but the other services aren't even close to being as good there as they are in AZ. Especially in So. Utah. we would have to pay out of pocket for pretty much EVERYTHING! Last year AZ passed a law that mandated insurance companies to pay for autism services. Unfortunately it doesn't cover all the cost, but the state picks up the rest if you qualify. Luckily they don't go off of income, they go from how severe the child is.
We only have a few weeks left on this phase of the study drug. Then we move on to phase 2 which is we know he will be getting the drug. We are not sure if he has the drug right now or not, the only difference we have noticed is that he goes #2 a lot more now. Before he went like once or twice a week. and he cried and cried from the pain. Now he goes almost everyday and doesn't cry at all. He does take the drug in applesauce 3 times a day. Sometimes we use yogurt and in his oatmeal at breakfast, but mostly applesauce. We don't know if its all the fruit or not. Before he ate a lot of fruit and still does he loves apple's grapes, <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">bananas</span> and oranges. He has been on a low sugar diet and doesn't eat candy or cookies or refined or high fructose sugars hardly ever. So fruit is his <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">dessert</span> and treats. Maybe the boost from extra fruit has made him loosen up. I don't know but, I will at the end of the month and maybe we won't have had the drug and just need even more fruit in his diet.We'll see.
<input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"></div><div id="refHTML"></div><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div>Taliahttp://www.blogger.com/profile/15012925989722254073noreply@blogger.com0tag:blogger.com,1999:blog-6936445935981027767.post-44047911358836111112010-04-24T22:52:00.000-07:002010-04-24T23:06:42.911-07:00Sensory<div style="text-align: center;">Yesterday Kobe had OT and it was not a good day for him at all. He was over stimulated by the sunlight and smells when he was outside, and he was distracted by the doors, ceiling fans and toilets, when he was inside. He cried and cried and cried all day long. I felt so helpless to see my baby boy like that. He kept his hands over his ears all day, and screamed and cried at the drop of a hat. I was bummed because it was our Peoria day and it was supposed to be fun.We met up with Aunt Kris after therapy and had a picnic at their house and went to the park to play. Maddox loves to play with Sydney, but we couldn't stay for very long because poor Kobe was having a terrible horrible no good very bad sensory day.</div><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div>Taliahttp://www.blogger.com/profile/15012925989722254073noreply@blogger.com0tag:blogger.com,1999:blog-6936445935981027767.post-47307898359953730482010-04-20T10:27:00.000-07:002010-04-20T10:51:14.349-07:00WEEK 3-4<div style="text-align: center;">Kobe has been sick and vomiting for 5 days, so he was unable to take the study drug. We had to move his Friday appt. to Monday. He is feeling a lot better and is back on the study drug. I definitely think that he has the drug. He has been more responsive towards Jed and I. Also he has showed improvement in his skills. He opened a bottle of H2O and poured it into a cup. He spilled only a little bit of it, but he grabbed a towel and cleaned it up. then he put the cap back on the water and drank from the cup. He has NEVER done anything like that before. I am excited to see what else he improves on.
</div><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div>Taliahttp://www.blogger.com/profile/15012925989722254073noreply@blogger.com0tag:blogger.com,1999:blog-6936445935981027767.post-27906591264273873642010-04-13T14:23:00.000-07:002010-04-13T15:40:07.404-07:00WEEK 1 & 2<div style="text-align: center;">Well Kobe officially started the CM-AT. It is an odorless tasteless powder that we mix into a large snack or meal. It looks like dirt, or cinnamon. He has to have it 3 times a day. I usually give it to him mixed with applesauce or yogurt. I am 90% sure that he got the drug and not the placebo. He has had a bowel movement EVERYDAY since he started which is an odd occurrence for that kid.He even went in the hot tub at the hotel over Easter weekend, and they had to close it for a few hrs,(and yes he was wearing a swim diaper.) I haven't had to do another poop test yet, not until Thursday anyways, so yay for Thursday, can't wait.
</div><div style="text-align: center;"> Other than the poop thing I haven't noticed any other changes in him. To be honest, I was kinda hoping for a miraculous overnight change in his behaviors, but mostly really I wanted it to be a cure for autism. I know it wasn't going to happen, but I will probably always hope for something like that to happen.
I have to take all sorts of data, every time he poops I have to examine it and use a number scale of what it looks like and the consistency. pretty gross. I also have to do a food journal of EVERYTHING that he eats including medicine, It's not as easy as I thought it would be. So hopefully at our next appt. they will be able to see some progress in him.
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<input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div>Taliahttp://www.blogger.com/profile/15012925989722254073noreply@blogger.com0tag:blogger.com,1999:blog-6936445935981027767.post-79915409989933375642010-03-28T23:17:00.000-07:002010-03-28T23:36:47.826-07:00CM-ATAutism is just more than a developmental disorder. It also comes with all sorts of medical stuff too. It ranges from kid to kid. Some of the stuff that we deal with is major digestive issues. He goes #2 about once a week and it is ginormous and the worst smell I have ever came across. He also gets candida and has a rash on his cheeks, I notice that he "stims" a whole lot more when this is flared up. Hopefully the CM-AT will help this, and Help to clear his head. A lot of D.A.N. Dr's think that the nutrients aren't getting to these kiddo's because of digestive problems and get into the bloodstream wrong and then into the brain. Yeah I know it sounds dumb the way I put it, so just read the book "Healing and preventing Autism" by Jenny McCarthy, and DR. Stan Kratiznel. It explains it a whole lot better than I do.
Pretty much if the drug works then they won't have to be on the GFCF diet.Taliahttp://www.blogger.com/profile/15012925989722254073noreply@blogger.com0tag:blogger.com,1999:blog-6936445935981027767.post-53953072597934333332009-10-18T16:32:00.000-07:002009-10-18T18:11:42.327-07:00Year 2Wow It has now been 2 years. It has gone by so fast. It has been a painful and terrifically rewarding interesting ride. Given a choice I would not have chosen this path, but I am learning to enjoy it. Kobe has been making huge strides in therapy. He has a VERY full schedule right now. He has Autism school mon-thurs. for 21/2 hrs, then rides the bus home cause he LOVES it. He has lunch then our super fantastic xtra special therapist comes over for 3 hrs. (Can you tell that I love her guts) then he has nap time(sometimes playtime when he won't sleep) Then our other xtra special super fantastic therapist comes over and works with him till dinner time. He does this all week till Friday then therapist 1 comes over early and plays with him. and takes him to Occupational Therapy. He used to have Speech Therapy, but we were dropped cause he missed to many times. (we were in South America, and I feel horrible for letting my little boy get kicked out cause I was on vacation) Jed said it's just an hour a week and he's back on a waiting list and we have no more major trips planned for a while so he will be fine. but I still feel bad. We are working with a company called AZA United and they are FAN FREAKIN TASTIC! They have been very helpful with getting our therapy program from just a dream to actually happening, and not just that but it works great. I love AZA. They also have a center downtown the we sometime go to on Fridays to see how the program is working and to make any changes or move him up to the next level. I love when he is moved up to the harder stuff, but I hate hearing the frustration when starting out. It is unbearable in our house when we introduce a new program. He has been doing so great though. So you see he has a very packed schedule right now. I feel bad for my other two kids Maddox and Jaxyn cause they want to have therapy too, and they are just stuck with lame old mom. They sit at the baby gate and watch. Maddox has been talking a lot more and says the stuff that Kobe is supposed to. It's kinda funny. We turned the formal living room/dining room into a therapy room. It looks like a little preschool. We have a 2 sensory swings that he loves. I am glad that we were able to have a therapy room and that way it is more structured. The AZA people helped arrange everything so that it would work for the program that they set up for Kobe. Like I said they are great. He is slowly starting to respond to us. He has shaken his head no when asked a question a couple of times. I started to cry I was so thrilled. He actually understood what I was saying and he knew how to respond correctly. Well I wanted him to say yes, but he didn't want to eat his chicken I guess. We hope to keep him progressing everyday. He is still 3 and won't be 4 for a few more months. Hopefully won't lose any of our services after that. We have our fingers crossed. We love our little guy and only want the best for him and I will go toe to toe with anyone who gets in my way. I have had a fight with the school district already and school started in August, I will never back down and I let them know that. Jed will finally be finished with his MBA this December(whoo hoo) and it doesn't matter where we move I will always be there fighting for Kobe.Taliahttp://www.blogger.com/profile/15012925989722254073noreply@blogger.com1tag:blogger.com,1999:blog-6936445935981027767.post-22359346234176516692008-09-18T22:36:00.001-07:002009-10-18T18:08:33.562-07:00Year 1<div align="center"><span style="font-size:180%;">While I was pregnant with Maddox, my second child, I decided that I wanted to cut my hair off. I had been looking for some cute styles, and My aunt Julie had said that Jenny McCarthy had just cut her hair and it was really cute and she could see me in something like that. I had been looking for a picture of her and couldn't find a good one. I had noticed that she was going to be on Oprah and since I tivo it I would get to see it. One night I got Kobe to bed early and had time to watch tv. So I started watching and loved her hair. she was talking about her son who had autism and she was telling her story about how she found out. While she was describing the signs I was thinking oh my gosh Kobe does that all of that. I called Jed into see her hair and to listen to her description of autism. He liked her hair but said to wait till the baby was born and I lost the weight. He also thought that she had just described Kobe. We both knew right then that he had autism, but neither one of us would admit it to each other or ourselves.Over the next few weeks we both researched autism on the internet every free second we had. We found some really helpful video clips on the autism speaks website and we sent the link to my parents who had also seen the Oprah show and thought the exact same thing as we did. We all knew but kept trying to find ways to prove that it wasn't true. I had Maddox and everything went smoothly, except for this nagging feeling that I needed to get Kobe checked, even if it's just to ease my mind. I couldn't call so I made Jed do it. We made the appt. but told nobody what we were doing. The developmental specialist at our pediatricians office was who we met with and she did a few things with him and told us that he had a lot of red flags and that we did the right thing by having him checked out. She couldn't officially give us a diagnosis, but told us to prepare for the autism diagnosis. We were referred to a developmental psychiatrist, who we needed to call asap cause she had a 3mo. waiting list. After it was over I picked up the baby from my sister in law and broke down in her entryway. I just remember that I didn't want to cry cause he was going to be fine. That night was our wards trunk or treat party and we didn't feel like going but I made us go cause I didn't want Kobe to miss out on things just cause we were sad. I also needed to keep my mind off of it. The next day Jed called and talked to the receptionist and she was able to get us in just one week later. She said that he was so young and that the sooner that he got help the better it would be, so she talked the Dr. into staying late. On Halloween day at we were given the diagnosis that we were dreading. We did recognise the Dr. she was in our last ward and recognised us too. I felt better knowing that she was LDS and that she didn't just talk to us like a Dr. but she also helped us spiritually. We were also informed that our pediatrician was also a member of the church and we both felt comforted by that too. We just chose him cause his office was the closest to our house. We really felt like the lord was preparing us ahead of time to help us get through the road ahead. After that we were both kinda numb. I wanted to pretend that nothing was wrong , and Jed just immersed himself in video games. We both were on the same page about what to do which was everything we could.We went to barnes and noble and spent $400 on books, not even kidding. We put him on the GFCF diet which eliminates gluten which is the protein found is wheat and casein which is the protein found in dairy. It is very expensive and extremely hard to find food for him to eat. I went home right after my birthday Nov. 7th and stayed there till new years. I needed to escape from it all and to be around my people. The psychiatrist said we would go through the stages of grief, and to remember that Kobe hadn't changed he was still the little baby boy that we loved. Just our idea of him had changed. We decided that no matter what it takes or how much it costs we were going to get him back. People don't really know what to say when they find out. We got a lot of I'm so sorry , but the best was "he isn't really autistic he just watches to much tv" . I'm so glad that there are know it alls out there who don't have any kids and have no idea what it takes or feels like to be a parent, telling me that it's my fault. I really try not to focus on what they have to say and focus more on what people like my friend Robyn said. She put it so perfectly and made me feel a whole lot better, and helped me get through the depression. Whenever i get down I just remember what she told me and it really helps. I am so grateful to all my family and friends who have helped me out. I hope that I will be able to be there for them just as they were for me if anything ever comes up. It's been a year and we have come a long way since. We still have a lot of work ahead of us but we know without a doubt that we will get him out and he will show no signs of autism. It's going to be hard, but we are up to the challenge.</span></div>Taliahttp://www.blogger.com/profile/15012925989722254073noreply@blogger.com1