Sunday, April 26, 2009

It's Confirmed

Aiden does have toricollis and plagiocephaly (mishapen head). The physical therapist should have called me last week but never did so I will have to call the doc back on Monday to see what is going on. The doc said that if his head isn't looking better by next week than we will have to start looking in to getting a helmet for Aiden. I can only hope that his medical assistance will pay for the helmet if he does need it because they can run about $3,000. That is a lot of money that I know I wouldn't be able to come up with.
Alex is doing alright. He keeps going back and forth with potty training. For a couple of days he does really well with no accidents and then for a couple of days he is having accidents left and right. It's really frustrating.
Kaitlyn is also doing really well. She is doing great with potty training and I feel it is safe to say that she is fully potty trained during the day.

Tuesday, April 14, 2009

Not Again

Aiden has had issues since birth. He has had jaundice, Group B Strep, thrush, a staph infection, and a yeast infection. I have noticed that since birth he has only been turning his head to the left. I was a little worried about this but figured it would resolve on it's own when he started to gain more control of his necks muscles. Well he is now 3 months old and is still the same. He only looks to the left, never to the right. So I was beginning to become a little more worried and decided to get some opinions.
So I posted the question on a birth board, I am a part of and someone brought up torticollis. So I googled it and come to find out that Aiden most likely has something called Congenital Muscular Torticollis. It basically is that the neck muscle on one side is short and tight. Most of time a couple months of physical therapy will correct this condition but occasionally it will persist and will require use of a TOT brace or surgery. I can only hope that if Aiden has torticollis, that it will be easy to treat.
I called the doc today and they can't get Aiden in until next Monday. Alex had a well child check up today so I brought it up to the doc and she was concerned also but told me it was a good sign that his head can be moved to the right. She didn't want to give a definate decision as to what is going on and wants to wait until his appointment on Mon. so she can check him out completely before telling me for sure if it is torticollis or something else. All I can say is that I only hope it is only torticollis and not something more serious. The new doc is so awesome. I am so glad that I found her.
That's all I need is to have another child who will have issues his entire life. I am already worried that he will eventually be diagnosed as being on the fetal alcohol syndrome spectrum and don't want to have to worry about him having other issues. I feel so bad for him already, he has been through so much in his short little life and now to have this would be horrible.
I feel like I am quickly becoming an expert at alot of different issues that arise in children and I don't want to be. It would be great to have the option of learning about them, not having to because they are happening to my children.

Didn't go as Expected but That's OK -- April 12, 2009

Today didn't turn out as planned but it was awesome. They were having some event at the zoo for Easter today. I had planned on taking the kids, and thought it would be fun to see animals, collect Easter eggs, and do some crafts. I decided to meet my sister at the gas station near the zoo, while my cousin went ahead. She ended up calling us and telling us that there was no parking and the lines were seriously long. My kids are not very good at waiting in lines and I knew it would end up just being a frustrating morning if we decided to go. So I went in the gas station to buy a paper to see if there were any other events going on. Well they were having an egg hunt at another park so we decided to go there. We got there a half an hour before the event started so parking wasn't a problem. It was a little cold but not to horrible. The kids got tons of candy (great just what they need) and had a blast. I was happy that we decided to go to the event at the park instead of the zoo. There was kind of alot of people at the park but they had different areas for each age group so the little one's didn't get ran over by the big kids. It was really nice. Afterwards we went to my sisters for lunch, then put the kids down for nap, and then we colored eggs. All in all it was a really nice day. I can't wait for tomorrow. My kids don't exactly grasp the concept of the Easter Bunny yet, but they will be surprised to wake to find baskets and a whole day full of fun. We are going to my mom's for lunch, an easter egg hunt, and just to hang out. Then we are going to a friends house for dinner. It should be tons of fun.

A Bunch of Updates -- April 10, 2009

I will be attending the FASD conference in Madison, Wisconsin in the beginning of May. I can't wait, we decided to go down and do a mini vacation as an added bonus. I am bringing a sitter with me to watch the kids while I am at the conference, except for Aiden who will stay here with a sitter for the two days. He is too small to enjoy any kind of vacation. After the conference we will be visiting the Zoo, museums, etc, and doing some general sight seeing. It's not the best vacation but it will be fun. To get out of here for a couple of days and go do something fun will be great. And I can't wait to learn more about FASD and how best to teach children with this disorder, manage behaviors, and everything else I will learn.
I will be taking Katie to a genetisist to learn more about her diagnosis. I would love to know more about where she falls on the spectrum and what it means for her future. More about therapy options/treatment options. More about what school can do to make it easier for her. I was hoping to be able to get in before her IEP meeting the end of May, but they couldn't get her in until the beginning of June. Atleast she won't have to wait 6 months like she would if I would have taken her to a developmental pediatrician. I am so excited.
Aiden, has finally started to talk about school. Usually when I ask him how was school, he will just say fun. Which I know is echolia from me asking him if he had fun at school so many times. Well the other day he named off both of his teachers. When I asked him if his teachers were nice, he told me yeah, then went on to tell me that his buddy was nice (in not so many words). I asked him who his buddy was and he named off this little girl who is in his class. She also sits next to him on the bus. I doubt that she views their relationship in the same light, but I am so glad that he is now talking about school. It's something we can build on. Hopefully one day he will be able to tell me about his day at school so I am not left guessing. I talk to his teachers when I drop him off in the morning. And if I didn't do that, then I would never know how school was going for him.
Aiden is doing really well. I tend to freak out about odd things that he does. I guess having two children with special needs leaves you worrying about the littlest thing that seems off. The other night he was staring at the light in the kitchen for like ten minutes straight, with this expressionless face. I called my mom and asked her if it was normal for a two month old to do that and she assured me that he was fine and it was normal for babies to be fascinated by lights and fans. I guess that if there is a problem I would like to catch it at the earliest possible age so we can start therapy or whatever. I still feel horrible that I stayed in denial about Alex's autism for well over a year. He could have started therapy sooner and would have been better off then. I just don't want to do make the same mistake with Aiden.
I still think about where Alex would be now developmentally if I would have known sooner and if he would have started therapy sooner. When he had a full evaluation right after his diagnosis, he was at a two year old level for about everything and his socialization skills were that of an 11 month old. I know he would rate much higher now after starting school and therapy. I have been buying alot of books and actually managed to find one about FASD. After reading about half of that book I am now positive that my little girl has FAE. I guess before reading it in black and white I could atleast keep some denial about her condition. She was diagnosed by her primary physician. The way he put it was that he was positive that she fell on the FASD spectrum but couldn't say more than that because he was no expert. That's one of the reasons that I want to have her seen by the genetisist, who actually has alot of experience with FASD. Another is learn more about the disorder. Katie has been having tantrums lately. Not like her normal ones, alot worse. It gets to the point where I have to put her in her room and shut the door, and let her cry it out. I don't know what else to do with her. It isn't like everyday but has been happening alot, atleast a couple of times a week. I talked to her occupational therapist about this and she wants me to try Alex's weighted blanket on Katie while she is having these meltdowns and see how she responds. I know with Alex, the blanket is a life saver most of the time. When he has a meltdown, I put the blanket on and it has an instant calming effect. He will still be crying but he won't be flailing around, kicking and screaming. Of course she hasn't had a meltdown since we seen her therapist and I hope that she doesn't have any more but I am curious to see if the blanket has the same effect that it has on Alex.
I can't believe how big all the kids are getting. I ended up having to buy Alex a bigger bed. He was getting way to big for his toddler bed. So now he is in his big bed, Katie is in the toddler bed and we put the crib in the garage. Katie never wanted to be out of the crib before. I think it was a security issue with her. I gave her the option of keeping her crib or starting to sleep in the toddler bed. She choose the toddler bed. So now we are down to only having one crib in the house again. I also put the bassinet into the garage too. I can't wait until we have the garage sale sometime in early summer to get rid of all of this stuff. I am sick of hanging on to it all and I am not planning on any more children.

Is There Anything Wrong With Being a Little Careful -- March 30, 2009

I am not sure if vaccines cause autism but until someone can prove that they don't I would like to be extra careful. I know vaccines are important. They prevent diseases that used to run wild and take innocent lives. They save millions of innocent children. I am planning on vaccinating Aide but would like to use an alternative schedule. What is wrong with that as long as he eventually gets all of them. There is no date stamped on our backs that says that we have to get a certain vaccine by a certain age or it won't work or that it will be less effective. What's so wrong with doing it a little differently if it will make me, the parent, feel a little better and a lot less worried. Aiden doesn't have the predisposition to autism like a biological child of mine would but considering like 1 in every 90 some boys develop autism I would like to be careful that's it's not something that I do that causes it. I took Aiden in for his 2 month check up today. I told the doc that I would like to delay giving vaccines until Aiden was feeling better (he has a staph infection, thrush, and a yeast infection, poor baby), to see if the doc would be open to doing an alternative schedule. All I can say is wow. The doc acted like it was the end of the world that I preferred to wait for a couple of weeks. He kept on trying to talk me in to giving Aiden the vaccines by telling me about another little boy, who is 7 and unvaccinated, and contracted mumps (or something similar). And he told me that Aiden looked healthy enough for vaccines and the only reason to not give the vaccine on time is if the child was really sick. I wanted to scream at him that Aiden is really sick and has been sick since he was 2 weeks old with this and that. So apparently Aiden's immune system is already compromised from having to try to fight off bug after bug and you want to stick some dead virus's in him to top it off so his immune system has to work even harder. Are you f__ing kidding me. I was so upset with him but I just held my ground and told him that Aiden would not be getting any vaccines today.What kind of doctor would try to force someone to do something that they were not comfortable with. Aiden will get vaccinated but just not today, don't get your panties in a bundle. The doc is a really nice guy who takes time to listen to my concerns (but not today). I really hate that I now have to go find another doc because this one was so pushy about vaccines. He already knew about my unique family make up and about the children's disabilities. Now I have to go through the whole process of trying to "break in" a new doc.
I did how ever already find the new doc. Someone (who also has a child with autism) suggested this doc because the doc is ok with doing an alternative vaccination schedule, already has experience with children with autism, and was highly recommended by someones who's opinion I trust.

Life With Four (OMG) -- March 28, 2009

Today I took my 14 month old nephew Zach for the day. He has been having some issues and I wanted to give his parents a break. He is a gorgeous little boy but is a handful. They are getting him looked at for autism right now. So today I had 4 children ages 4, 3, 1, & 2 months. Wow was it a day. Zach was actually pretty good for me but trying to carry two children who don't walk yet, diaper bags, and trying to control the two that can walk was a difficult task. I couldn't even imagine trying to do that every day. And for you parents out there that have 4 children under the age of 5, I give you props. I couldn't do it without loosing my mind and just sitting at home all the time because it would just be to difficult for me to go anywhere with all the kids by myself. Having three children who are young is difficult but add in one more and it's almost impossible. But having my nephew gave me the chance to see what symptoms he was displaying and to see how he interacted. It wasn't as bad as I originally thought but the differences are there and pretty hard to miss. I am so glad that his parents are having early intervention come in to do an assessment and most likely start services for my nephew. Most likely he will at least need speech and occupational therapy if not physical therapy too. He only says two words, has sensory issues, and is still not walking (though he is taking a few steps). I don't even remember how Alex acted at that age but I know that I really didn't have any major concerns about him (though I should have, but being my first child I didn't know what to expect). It wasn't until he was two that I really noticed that he was behind in his speech. I had a speech therapist come in and do an assessment but she said, "Oh, he will catch up." He had only said 30 words at that point and most of those words he had said only once. But I did let that statement keep me in denial about anything being wrong with my son for another year. It wasn't until someone asked me if he was autistic that I started doing research. I knew nothing about autism before starting research and when I read the symptoms of autism it described Alex to a T. I was happy that I had finally found a word that described what was going on with me son but also very scared. Scared about what having autism meant for my son, scared about what it meant for his future, and scared of the unknown. He was diagnosed when he was 3 1/2. He is now 4 and has made so many improvements in the past 8 months. I just wish I would have come out of denial sooner so he could have started therapies sooner but what is done is done and I can only focus on the future.

Special Education -- March 24, 2009

Alex already has an IEP in place so I have been through the process of getting special education. Now it is Katie's turn. I went in and the same mean lady that told me that Alex wouldn't qualify for services, was still working there and basically told me that it would be better to wait until Katie started school before doing an evaluation. That Katie was showing signs that she would have issues in school but that we should wait. Luckily I had my advocate there who suggested to me that we do the evaluation now and if we don't get services that we can also ask for another evaluation when Katie starts school in the fall. But it would be better to have every thing in place before she starts school because if not they could take up to 3 months to provide services, and Katie would suffer during that time trying to cope. I am so, so, so happy that I had an advocate. Even going through this before had not prepared me for what was happening. It did make sense to me to wait to see what problems she would have at school, but it would be better to have the services in place and then if anything needs to be changed, we can always re-write the IEP. But atleast during the time of re-writing the IEP she would be recieving some services to help her out. So here we go. Katie has the same team working with her that Alex had except Katie has a nurse involved since FASD is considered a medical condition, so I am familiar with almost everyone. I really liked everyone that was on Alex's team and am very happy that Katie will have the same team. They are a really good group of people to work with. Now I can only hope that Katie will be given all the services that I think that she needs/deserves. She is a bright little girl but has issues that get in the way of her learning.

Update on Katie -- March 17, 2009

Katie had her first appointment for occupational therapy (OT) today. Come to find out that her therapist is the one that Alex's therapist trained. She is so wonderful and is very patient with Katie. Katie will be recieving OT for safety awareness issues and for her need to suck on things (that's why at 3 she still has a pacifier, without it she puts everything in her mouth). Her safety awareness issues are the fact that when walking or running she will walk into walls or things because she is not paying attention. She also doesn't pay attention to others around her (like when we are at the park she will constantly walk by the swings and has been knocked down by people who are swinging, or will just walk into the road without caring if there are cars coming). What I thought were balance issues is actually her brain going so quick that her body can't keep up so she falls. It's the ADHD like symptoms of having FAS. Something we will have to work on in the future. One thing at a time. I have Katie's first appointment with special education next week. I am worried that she won't qualify for the services that she needs because she is very smart but that is hindered by her unattentiveness and forgetfulness. She is where she should be at educationally (after alot of work from her and I) but her behaviors get in the way of her learning. The fact that some things have to be retaught again and again before it sticks in her mind is another area of concern for me. I just worry that once she starts school I will be called to school everyday to come get her and then she will get nothing out of school. I know being around peers in a structured environment will really help her but she will need extra help to stay on task. I can only hope that they see that. With Alex, they offered everything that I thought he should recieve but I am pretty sure that with Katie I am going to have to fight to get her what she needs/deserves. I took Katie to gymnastics yesterday to see if she would like it. She is shy so she really didn't join the group and didn't seem to even want to do what they were doing, so I doubt that we will be persuing gymnastics. Atleast not at this time. She did have fun running around though and swinging from the bars. I don't want to spend that kind of money for something that she isn't that into. I think I am going to look into karate for both of the kids that they offer for 3 years old and up. The instructor has experience working with children with special needs so that is a definate plus. It's something to consider for summer. Alex is so used to being in a structered environment 4 days a week and going from that to absolutely nothing for summer would be a bad thing so I am trying to find classes or something to do for summer.

My Kids Amaze Me -- March 14th 2009

There are many times when I think that my children will not be able to do something but decide to try any ways. My children tend to get overstimulated when there are too many people or too much noise. There are certain situations where I go in thinking that they may get overstimulated but at the same time I don't want to keep that fear from me giving my children new experiences. It would be easier just to sit at home all the time where I know that they will not become overstimulated but what kind of life would that be for them or for me. I want them to experience things and if it is to overstimulating then remove them from the situation.
My cousin invited us to her daughters birthday party which was held at a roller skating place. I wasn't going to go but figured it would be something new to try. But I did go in expecting that we wouldn't stay long because it would be to much for one of the kids. I was babysitting my niece and nephew at the time also (ages 10 & 5). I figured the 10 year old could help out with the smaller ones and found a sitter for the baby, Aiden. We got there, got our skates, and attempted to go out onto the floor. Mind you I haven't skated since the 90's but did O.K. I guess. Both Alex and Katie attempted to skate but kept falling down and wanted the skates off so I took them off. Alex decided that he still wanted to go out on the floor so I took him out there. He held my hand and ran along side me as I skated (slowly) laughing and smiling the entire time. Katie hung out on the carpeted area playing with her cousins and having a good time. Neither one of them became overstimulated and had a great time. I was surprised that they both did so well. It wasn't until we came to leave that I had problems with any of them and it was the one I least expected. The 10 year old didn't want to leave so she was upset, then accidently spilled some juice on her pants and started crying. Poor thing must have been tired because she never acts like that. But all was well after 5 minutes of talking to her.I went in expecting the worse and it turned out to be such a great afternoon. I am so glad that I decided to take the chance and take the kids skating. I am very sore because I haven't skated in a very, very long time but it was well worth it. I probably won't be saying that tomorrow morning when I wake up not able to move. :) I can't wait to take the kids again. If I have another adult there helping with the kids I bet they will both skate and have a great time.

Never Expected -- March 8, 2009

Katie has her appointment to get evaluated for special education services at the end of this month. I really do think that she will benefit from school. She needs to be around other kids her age in a structured environment. A couple of years ago I would have never thought that I would be sitting here today with 3 kids, 2 of which have special needs and being able to cope with everything. I have always wanted a large family but never expected to be going it alone (well not exactly alone, I have an excellent roomie who is very helpful with the children). But through it all I wouldn't change anything for the world. Yes, having a man in my life would be good, but then I would have to find time to spend with him and find the energy needed to make a relationship work and right now I don't have either. I never expected life to turn out like this but I am glad it did. Going through everything has made me a stronger person. I am my children's advocate and that has taught me to speak up for what they need instead of remaining quiet. I just hope I won't have to fight to get Katie the services that she needs and should have. I was lucky when I went through all of this with Alex. The school offered everything that I thought he should get. His main issue was speech and he is receiving therapy for that and is also recieving occupational therapy for sensory issues. I can only hope that things will go as easily with Katie.

Worries About the Future -- Feb. 26, 2009

I was thinking today that my life is crazy, but it could be crazier. There are people out there that go through so much on a daily basis and have so much less than I do. I am not rich, actually kind of poor. But there is always a roof over our heads, food on the table, clothes on our backs, etc. Some people don't have that and for some it's not there faults, they didn't make horrible decisions in there life but just had bad things happen to them. I am grateful for all that I have. I have 3 wonderful children who may have there challenges but have made me a stronger person and who will come out stronger by having to cope with their disability.
I worry about Alex's future. With having autism he has a lot of problems with socialization. Right now just being in early childhood, all the kids absolutely love him but when they get a bit older the other children will start noticing that Alex is different and may start to tease him. When I bring him to school all the kids are like, " Alex is here. Hi Alex. " Even though he doesn't acknowledge them, they are still happy to see him but I don't know how long that will last. I don't think that Alex understands that he is different yet and I don't know how I will explain autism to him that he can understand. I also don't want him to think that he can use his disability as an excuse for bad behaviors or as an excuse for not trying.
Same thing goes for Katie. I don't want her to use her disability as an excuse for bad behaviors or as an excuse for not trying. I worry about having to tell her that her mother's alcohol use during pregnancy is the cause for her issues. I don't want her to end up being an angry person because of what her mother did to her. It will be a long road with her because I have to reteach everything to her at least a couple of times before it sticks in her mind. Her memory is that bad. One day she knows how to do something and the next it's like she has never done it before. I worry about other kids teasing her for being a slower learner and her just giving up because of the teasing. She is so lovable and funny. I don't want her to ever stop being who she is. I can only hope that with therapy and school that she will start making some progress with her issues.
I worry that Aiden will eventually be diagnosed as being on the fetal alcohol disorder spectrum. I can only hope that he will be one of the lucky one's and not be affected at all. He doesn't have any of the facial characteristics but as I found out with Katie that doesn't mean that he isn't affected. Katie doesn't have any of the facial characteristics of FAS but has all the behavioral issues that goes along with the disorder. I know I am just a big worry wort but with having children with disabilities, you worry about what issues will develop in the future. But I have also learned how to celebrate every little accomplishment that "normal" parents take for granted (no offense intended). It feels good to write down all my fears for my children's futures so if they don't happen I can check them off as worrying for nothing. And I would rather be prepared for at least some of the issues that might come up than be blind sided and not know what to say or do.

Life Right Now -- Feb 25, 2009

I am a 24 year old single mother of 3. My 4 year old son, Alex. My 3 year old niece, Katie. And my month old nephew, Aiden. My life is crazy at times but very rewarding. My sister is unable to care for her children so I have had my niece since she was 9 months old and my nephew since the day he was born. She has 5 children and is adopting Aiden to me but Katie is still undecided to what my sister is planning on doing.I don't work right now because I was just fired from my job that I have been at for the past 5 years and haven't been able to find a new one yet. So I am a stay at home mom for the first time and for the time being. My children are my world so I am loving it right now. I need to find a good man that has the resources to let me be a stay at home mom permanently and is great with the kids but that has yet to happen. :)Alex is my smart little warrior. He is a very determined child but is extremely lovable and compassionate. He is a great older brother and really loves his younger siblings. He is in an early childhood program 4 days a week where he recieves speech and occupational therapy. He also recieves speech and occupational therapy at the CP Center (cerebral palsy center). He was diagnosed with autism in July 08, and has made so much progress in the past 7 months. It's amazing to see how far he has come and I can't wait to see how much more he accomplishes in the future.
Katie is my awesome little princess. She makes me laugh all the time. She is a very caring older sister who loves both of the boys. She was diagnosed with fetal alcohol effects last month but I have suspected for a while. She will be starting occupational therapy at the CP Center and I am in the process of getting her evaluated for special education services through our school district, so hopefully she will be able to start school soon. I think being around other children in a structured environment will do her alot of good. I also cannot wait to see how much she accomplishes with the help of therapy and school.
Aiden is my littlest prince. He is a month old and I couldn't ask for a better baby. He is content most of the time. He loves to just look around and evaluate his surroundings during his waking moments. He is very curious and unlike most little babies he loves to take baths. He hated the sponge baths when he first came home from the hospital but loves tub baths.