Diagnosis

Well I found out that her developmental pediatrician did in fact diagnose her with autism. We had an appointment to go over everything a few days ago and when I asked her about things in CA she informed me that Kaytlin should have no problem getting anything she needs out there with her diagnosis. I said, "with PDD-NOS" and she said no the one that I gave her at our last appointment of Autism. Needless to say I was a little shocked because she specifically said she was not going to give her a diagnosis but to proceed as if she was diagnosed with Autism. I guess she changed her mind after the appointment. I was given her report and all of her test results from the genetic testing. I wanted to include in here a copy of the report, however it is not scanning dark enough to put on here so I will type out the doctor's diagnosis area.

DIAGNOSIS:
Autism, this is a provisional diagnosis given the patients young age. At this time, Kaytlin does meet DSM-IV criteria for the diagnosis by history. Of note, her psychologist has previously evaluated her at the age of 26 months as meeting criteria for autistic disorder.

I guess the provisional part doesn't mean squat except that she should be re evaluated at around 5 or so and see if she still fits the criteria. When it came from her psycologist it was not put on her because you have to have a doctorate to diagnose, so it is official Kaytlin can get anything that is out there with the Autism diagnosis.

How do I feel about this? I have been asked this soooo much it seems. I am okay with it, I know that I will do whatever I have to in order to get whatever my daughter needs to succeed in life to the best of her ability. I am thankful and greatful that she is very high functioning, and I often forget and second guess myself that anything is wrong with her, until she regresses or has her horrid meltdowns or forgets and gets confused half way while trying to perform a simple task.

There are many people out there who have judged me and basically said that I am wrong and there is nothign wrong with my daughter. I want to tell anyone who says these things to people/family/loved ones, anyone in general that is the worst thing you can ever say to a mom or dad that is trying their hardest to raise a special needs child. Unless you spend every waking moment with that child you should keep your opinion to yourself. This is not a topic of gossip, this is not a topic taken lightly, and this is especially not a topic or situation for a support system to turn on the people that need it the most. I am very dissapointed in everyone that has doubted me and my parenting ability and I pray that one day you will see the light and that we as parents are doing what we need to do in order for our daughter to have the best life possible.

I also want to thank everyone that has supported me in this year and a half journey to getting a diagnosis and figuring out exactly what was going on with Kayt. Her therapists rock and I cannot be more thankful for her developmental therapist and psycologist who have not only helped with Kayt but also to re assure me that they would not be waisting their time or ours if she did not need their services.

I am over ready to move where my mom can help and take Kayt for a day and give this mommy a break :) Kaytlin and Robbie are definitely a hand full! I will continue to update and I want to thank everyone that has been here reading whenever I update and praying when I have asked you all ROCK!

Okay I learned something new today. Kaytlin only knew she was going pee in her potty because it sings, she couldn't feel that she was going! She thought for sure she went in her bubbies frog potty which doesn't make noise, and she hadn't and it happened a few times. She also peed her pants at hippotherapy and had no idea that she did it and I guess her shoes were full of pee, if her pants didn't have a huge wet mark her OT wouldn't have known till she felt it! My poor baby girl, I knew she was good at making people believe that she knew more than she did, but she even fooled her mom and dad this time! I wish I could fix all this for her, I guess I was in denial for a bit there thinking that the hippotherapy was the cure all for her. Don't get me wrong it is helping, but not as much as I had thought. Anywho just wanted to update.

Sorry I have not posted in a while. We started Kaytlin's hippotherapy and things have been soooo wonderful since! She has been a different child, a typical 2 yr old (i will take the stress of that over before anyday!). She is even potty training now! Today she had 0 accidents until this evening. We even left the house, I took her potty with us and she used it in the back of the van lol. She talks much more clear, asks for what she wants instead of crying, understands a lot of what we tell her, it is just amazing! She still has her motor planning issues (her tongue that I mentioned before and a few others) as well as sensory which we don't think she can feel when she needs to go #2, she also is still unable to tell me what hurts or where she hurt herself which makes it hard when she is crying and I have to search for whatever got hurt.

I am just sooo amazed and proud of my little girl. I know some of you read some nasty things on my facebook wall that were written by a few members of my husbands family, but I want you to know that we do not speak with those individuals anymore as that is just poison that does not need to be involved in our lives. His mother is very much for everything we are doing now as she can see the delays also, my mom, as much as she doesn't see too much of the delays (or doesn't want to), does not look down on any of the things we are doing anymore as she sees it more of any help teaching her things is not doing her any harm anyway.

Kayt has her transition meeting to start developmental preschool coming up! I cannot believe my baby is almost 3!!! She has also been released from speech therapy! The hippotherapy helps her think so well and process what she wants to say clearly enough that they do not feel that speech therapy is needed anymore :)

Okay I will stop bragging about my brat. Thanks for keeping up!

What a wonderful day!! I hope this is a result of the hippotherapy! She has had a rough afternoon, but this morning was great. Thankfully it was our picture day and she just cheesed away. I am going to go get the pics off the online and post one. I am so proud of her!

My girl :)

This one was taken 5/30/08!!


This one was May 2009!

Today was still rough, but much nicer than yesterday. Today Kayt counted my fingers!! All the way to 5 it was great. She had a period where she was just wanting to learn so I took advantage of it! I am going to enjoy it in case it goes away since that does happen. I also learned how to use the sewing machine today! I can't wait to start making my ideas come to life. I have a few new ideas for sensory toys that I think will do great.

Quick funny story, we came home a few days ago and i stopped my car at the beginning of the driveway and got out to get the mail, well when I went to sit back in the car Kaytlin tells me, "Hurry up mommy, almost home." Most people prob wouldn't have understood her, but boy I did lol... It was soo funny. She is becoming awfully demanding lol

So today Kayt exibited a lot of things that she normally doesn't do. She has been very very fussy today, really ugly towards everyone. The trip to Wal Mart for my sewing machine was an absolute nightmare, usually it is bad, but this time it was just ugh. Everyone of course had to stare at us. Well anyway fast forward to my dads house and she was okay when we went in. She sat to eat her lunch and had leaned over the table and got ketchup all over the front of her. I went and cleaned her up as good as I could with a napkin and my stepmom went and got a wet washcloth. When she went to go clean Kayt up she pulled back and ran away, she got mad and was very withdrawn from her. Well my stepmom sat down and asked her to come to her and she finally just grabbed her and brought Kayt over and cleaned her up. Then we told her we were going to go outside, which she loves to ddo and she spreads her legs apart like she is peeing on herself and cries. I went over to get her and changed her and she wasn't wet everywhere. I mean her diaper needed changed but it definitely wasn't coming down her legs like she thought it was. So fastforward some more and we were on the front porch and after the kids were done with bubbles my stepmom cleaned Kayt up and was still holding the wash rag and leaned to give Kayt a hug and the wash rag touched her arm and Kaytlin jumped back really far and would not go near my step mom at all. She wouldn't give her a hug and kiss or anything. Then she cried about 1/2 the way home (20 min drive), and nothing I did was going to make her happy. It has just been a wow day.

I am going to learn to sew!! My step-mom is going to teach me to sew today! It is going to be the cheapest way for me to be able to get the things Kaytlin needs, well some of the things, and hopefully be able to sell some for a cheaper price to help out other moms in my predicament! I am so excited, okay I better get going I need to get dressed and go on over to dads.

Have a great day everyone!! My daughter decided to be up most of the night as usual, more incentive to get that blanket made!

My princess

So we were talking with the OT today at kaytlins therapy and she mentioned getting kayt ready to want to color and sit at a desk or stay on tasks along with other kids. I kinda laughed and said oh crap at the same time. Kaytlin likes a pen for a whole 2 minutes (thats being generous) she bores of them very very easy. She prefers blocks and more blocks, and babies that is about her extent of play, a little dress up here and there. I didn't realize we were supposed to start working on getting them into using crayons etc.. Kayt really doens't like it. Darn more worries.. Okay I totally should be posting this on the blog, that is what it is there for.. so I will copy it from here (MMT) and paste it on the blog.

I wish today would have went better. I fear it is too much for her, it was like she had taken a codein + tears (if there were such a pill) really really out of it.

I really hope I am not boring you guys, I honestly don't feel i have anyone that I can sit and talk all this nonsense through. If I hold it in it builds up and then I just get angry about things. I want to stay calm and open for Kayts sake. It is easy to feel saddness while she is n a regression faze, it is easy to feel tears running down my cheeks as I think of that beautiful gift from God, and to know that He believes in me soooo much that He was willing to give me someone who was special like Kaytlin, He trusted me as a mom to do what was best for Kayt. What a huge honor it is.

My daughter is one of the most loving and caring individuals to the best of her capabilities. She always is wanting to make people laugh or have one of us come tickle her. What a precious give that God had given me that I have a verbal autistic daughter so that I can hear the u2 words after I tell her I love her. I hurt for the moms whos children cannot say I love you mommy. I hurt for the other children like mine who don't understand what happened when they get hurt really bad and there is blood everywhere because of lack of pain. I feel sorrow that I did not do more for other kids with issues that need help, I could have volunteered, donated a little to Riley, something to help. I think my daughter is a way to remind me how important the simple things like hugs and kisses and personality are so easily lost in a child with autism. I am so thankful for not losing that, but hurt for my family and friends who have children that cannot speak. This thing is far uglier than I ever imagined. I never realized how much $ it takes to raise a child with special needs. Okay I will shut up guys. I am so sorry I am sure you are tired of me and tired of hearing about me.. It's bad enough what Katie is going through and I pray for Garrett all the time, and ask my readers to pray for him. He is such a trooper and he is so blessed to have Katie by his side as mommy, I cannot imagine what she is going through nor would I ever ask to be put in her shoes, but I do know the worrying about your own child and I definitely think keeping her in prayers has helped her continue to be strong, those leaps and bounds that Garrett is trampling right on over are proof enough to me that Kayt will stay strong and she will do what she has to do in order to get out there and be the best Kaytlin can be. My prayer is that she never gives up on herself.

Night guys, God Bless all of you. Once again sorry for rambling, I must go to bed.

I forgot to post about how Kayts afternoon went after hippo therapy. On the way home she was very quiet, but alert so I figured she ws just taking everything in. She got home and was fussy and then decided to fall off my bed and bust her mouth open, which she only whimpered. She had no clue it was really hurt till i started getting all the blood off. It was a deep gash. She ate and went dow for a nap about 230 and they were easy to convinvemself.
She was really drawn away from us and just really calm sensory seaking but not knowing what it is she needsPart of me is saun that a large wow factor i ther e When we pulled ijto the drivewau to kknow we might b

I have no idea what i was thinkingughh ambian has gotten me again ;( Goodnightlovely ladies.. I will learn how to sew and get a nice machine, th eproblem being dot letting mu imagination go ogerboard or i would desgn allof kayts clores llol okay spelling is getting bad, nust get in ned.. beob has baby duty fo rthe first 4 houjra I take it.. Yea time is tickem My main point taht Kaytl was very qhiney, over tired, wanted to sleep all day, didn't want to eat. went down for bed at 9 with no fuss

As hard as this is to ask, and as much as I have wanted to avoid this I am going to put a donate button on this page and anything that is sent I will send you an email or something showing what it went to. We now have to drive 1 hr each way to Kaytlin's occupational therapy every week and we have to drive 20 min each way to her speech therapy on a diff day. I need so much for her as she is getting older and I just don't know where I am supposed to get all this money to do all these things. I have no idea how moms have done it before and will do it after. I am so overwhelmed with all the expenses that there is no help for. We just miss qualifying for food stamps and luckily the kids are on medicaid. There is no way for me to work, I tried working on weekends only and of course kaytlin had a really hard time with me being gone so much. I did it for almost 3 months, and it didn't get better, her attitude got worse and she became more violent with her brother. I dont mind working somewhere on weekends since I have to take her to so much during the week plus the other 2 therapies that come to our house that there is no way to work all week.

Sorry about the babbling I am soooo overwhelmed with all these things it isn't even funny. Anyway if you can help it is greatly appreciated and will only be used for things Kayt needs and gas to and from appointments. I give my word it will not be used for anything else. I know there are a lot of scams out there, but I can promise you this is not one.

Okay I have someone working with me on getting the blanket done for Kayt. We are having issues with finding Barney material. I just want to make sure it is one that she will want and warm up to.

Keep praying for Garrett also please.. Big hugs Katie

What I need to do/get

I decided I need to make a list of what i need to get for Kayt. She will be going into preschool soon (developmental) and since we are a paycheck to paycheck family like oh 80% of america lol, I need to make a list and find things for as cheap as I can. If anyone finds any of these things for a reasonable price let me know! If you have one or some of the items and want to donate them to Kaytlin that would be great too. Just send me a message and I will email you our home address.

We need to get a weighted blanket to help with her sleeping issues. I have the lap pad, and she does snuggle it at night, but once winter gets here I am guessing we may be able to leave a weighted blanket on her and she will hopefully sleep better and not wake up freaked out.

Medical ID bracelett that indicates that she has autism with our cel #'s on it. She likes to get away from us.

Shoe ID tags.

weighted vest

sensory toys

trampoline that has the closures so she wont get hurt. Anything jumping, swinging, and spinning keeps my girl happy as a clam :)

Any other suggestions or ideas let me know!!

Okay are you guys ready for this?? I am just re-posting what I posted on My mommy time

Okay so she meets all the requirements to have an actual diagnosis of autism and not PDD-NOS which is a milder form of Autism (at least that's how I understand it). Her new doctor which is a developmental ped wants to wait one more year before putting the actual diagnosis on her paperwork so that "if" and that is a big "if" she does change for the better in the next year it won't be a miss diagnosis. I like that! It sucks in a way here though because I didn't think it would be actual Autism, but more of PDD-NOS. The doctor said she noticed the speech right away, wow, really lol.. Most docs don't, she is on it. Kaytlin showed everything while we were there, including getting scared of the paper towel machine. Sooo anyway we had to give like 6 vials of blood! They are doing genetic and MANY other things just to rule out anything medical in order to focus all on autism. My girl did so good today considering. She also gave a pee sample . You guys I don't think everything has set in, even after all this time. The doc did tell me it was nice speaking to a mom that was so well educated on it all That made me feel very good about that. She said that on top of the developmental pre-school she wants Kayt to be in other things also. Just please pray we get the SSI soon because finances suck big time, and working didn't work at all. Kayt got worse when I was working on weekends. Anyway so there we have it, my kid has autism. hmmm nope don't like the sound of it. Okay I will quit rambling. TTYL..

Okay wow, I got some very exciting news today. So if anyone knows me they know that my sister and I have gone through some rough spots in our friendship with each other. Well we started talking the other day again after about 3 years. Well after seeing her kids with mine we both started to realize that Kaytlin and her daughter Ashley are just about exactly alike. They both have the same tendencies and hard time understanding and learning things. This is huge for me, I was so excited to see that this is in our family and I have someone else to relate to everything, and that someone else is my sister! How awesome is that?? So anyway as soon as my sister leaves today my phone rings. I picked it up and it was the developmental pediatrics at Riley Hospital. They are the ones that were going to do Kaytlin's medical evaluation. Well they said that the doctor could not see Kaytlin on December 9th because that doctor will not be there. They asked if we would be willing to change her appointment to tomorrow! Well, of course I would be willing!! Are you kidding, I just found out that things are not in my head and this is hereditary on my side of the family. Some people may think I am strange for being happy about this, but I have gone through a lot of self doubt. God is soooo good. I was so excited and just couldn't believe that this may be the end to all of the questioning. It is not a coinsidence for these things to fall one thing after another like this. All I could do was thank God and be soooo excited! Keep us n your prayers tomorrow, her appointment is at 10am and her phsycologist will be meeting us there.

Oh my goodness these night time freaking out episodes only seem to be coming more and more frequent. When I read about night terrors, it seems that it is similar, aside from the fact that she is coherent when we get to her, she is usually sitting up in the corner of her bed freaking out and either runs to me when I open the door or throws her arms around me and is still trying to catch her breath after she is back asleep. Rob (my hubby) got to witness it first hand last night. I was in the other room and when I came out she was asleep in his arms trying to catch her breath. It is so heartbreaking, especially when you hear that first scream. It is like straight out of a horror show. My sleep time at night seems to be getting shorter and shorter. Been up since 3am with the kids again. Okay I am done, just wanted to write down what happened last night.

Well we have an appointment on September 9th for Kaytlin to get her review for SSI. Because we haven't been able to get into the docs for the official medical diagnosis the SSI office wants their own doc to review.

I also got a call yesterday and her official medical review will be December 9th. It is so bittersweet. I mean yes I want the waiting to be over, no I don't want it definite. When it isn't an official diagnosis you still have that thought in your head that maybe everything will be different tomorrow morning. Denial I think it is called.. Unfortunately I see every day how she is in fact about 6months+ behind now. It is hard when there are things like physical that she is advanced you know.

I met someone today that didn't even know about First Steps. Maybe, just maybe God has given me Kaytlin so that I can reach out to other parents and let them know about First Steps and that they should follow their guts, as I have always said, it never hurts to get your child evaluated especially if your gut is telling you that something is not right.

Hey guys. Well life is getting quite stressful with Kaytlin lately. It seems that no matter what we do it seems to be more and more stressful around here. I am sure everyone is saying oh that is just her being at that age, but imagine horrible 2's and having a developmental delay on top of it, and the fact that she doesn't comprehend the discipline makes it even more rough.

We were at the docs yesterday (Rob and I), and there was a little girl who will be 2 in November, and her mannerisms were exactly like Kaytlin's. I felt like I was watching Kaytlin in a younger body. I was laughing sooo hard, I was wishing Kayt would have been with us because she would have been so fun.

Kaytlin is now so terrified of the vacuum that when I opened the closet it is in yesterday to get her blocks out she saw it pointed and ran crying to the couch. It used to be that she could get her blocks etc out of there and it didn't bother her. I feel so bad for her. We even tried to buy a toy vacuum and couldn't even put it in the cart at wal mart!

well the eeg went good she left everything on the whole 24hrs. When they took the stuff off she freaked the whole time and refused to lay down. glad its over

Kayt goes in today for her 24hr eeg. I am nervous about her keeping the wires on and bubby not taking them off!

Okay sooo sorry it has been soo long. I cannot believe it has been since June 8th! I have been really busy in my defense.
Okay so Kayt has an appointment to set up for a 24 hour eeg because of the middle of the night issues that she has, for like 3 days they were really bad earlier this week. She has had the waking up freaked out cold sweating for as long as I can remember and it isn’t every night, but sometimes we go through periods where it is. We know it isn’t night terrors because she is awake. Any who they want to make sure there isn’t something happening while she is sleeping that we cannot figure out since she does not understand when we ask her what is wrong, and she doesn’t offer to tell us (if she can).
We have figured out that her either her motor skills are not processing correctly to move her tongue up to the top lip or her tongue does not have the muscle to do so. We have been working on her chewing on items with her back teeth because we found out she was not using her tongue to move them over there. If it isn’t one thing it is another right. Her speech is getting better and I am so glad that she is able to tell me more things! It is such a blessing every time she talks about something new that I understand. She is currently into drawing circles, lines, and as of today squiggly lines lol. She told me she was writing her name lol. She continually crawls into her brothers bed at night, they are both in toddler beds in the same room, and I think she feels more comfortable with him up against her. It is only logical since she does have that sensory pressure need anyway, so as long as he doesn’t mind it helps her to sleep better.
We had her re evaluation the other day and they of course are recommending continued treatment for her, if we cannot get an OT to come once a week than they will okay the hippotherapy, which is awesome! She has an appointment for a speech therapist at the hospital since EI has not been able to get her one since her last one quit doing children that are out as far as we are. She still has her psychologist and developmental therapist. We learned after upping her DT to 2x a week that it isn’t making any difference. The only thing it has done is gotten Kaytlin more used to her therapist and made her not want to do anything for her… makes for a pointless session lol.. We are still at the same point in potty training. We will be meeting with the developmental preschool person soon too.

Well I better go it is 12am and I am wide awake, I need to get some sleep

We had some occupational therapy today and it was nice talking with Melanie. Kaytlin had decided to eat some sand today out of her sandbox. Can you say yuck! Anywho we talked a bit about that and the fact that Kayt's eval is coming up on July 1st.
Kayt played a lot out on the swing set today and had a blast. Then tonight she was supposed to go with Becky to her house since we are all going to the zoo in the morning, and she threw a fit! She has always loved going to her Becky's house, this was the very first time ever that she wouldn't go. Well then I put her in bed about 20 minutes later and she went to sleep. Then about 1 1/2 hours later she woke up completely freaked out. No build up, nothing, just full on screaming freaked out. I ran in her room and she was covered in sweat and crying her eyes out. I picked her up and came and sat in the living room and didn't realize she was falling asleep on me. I went in the kitchen and layed her in my arms and she fell back asleep but held tight to me. She kept fighting sleep just to stay in my arms. I finally got her back in bed and she fussed for a couple minutes but her tiredness won and she in now asleep again. I felt sooo horrible for her tonight. My poor baby girl, I just wish I knew what the reason behind this was whether it was night terrors, nightmares, or confusion from her disability.

Ahh the lovelies of regression. I don't know if I had posted previously about kaytlin now thinking she has to be in her highchair to eat, and her brother that is 1 loves to sit in the big boy chair at the table. Kaytlin loved her big girl chair and hated the highchair for quite a while, and about 2 weeks ago decided she has to sit in the highchair to eat. This is fine, well she also started using food the way a 1 1/2 yr old does. My son has not started doing these things yet, and I hope he doesn't. I remember on the mommy boards about a year ago when we were all complaining about our kids throwing food, dropping it to the ground, squishing it all over, just getting to know textures and cause and effect. Welllll Kayt is back to that again. Tonight I would have to dub as the messiest in a long time. Now Robbie is messy, but that is just because he hasn't figured out utinsils yet. We had spagetti tonight and Kayt decided to use her hands, took a couple bites, then wanted to see how the food squished in between her hands and fingers, she threw it up in the air, she picked it up and dropped it, put it in her hands then shook them, it was great (note the sarcasm). Thankfully it was bath night tonight. I can no longer give her ketchup either because it is no longer a dip, which she has always done great with, it is now finger paints. She has never used finger paints so no it isn't because I introduced her to it. She sticks her finger in the ketchup and spreads it all over her face and arms and legs. She used to stick her finger in it but would put it in her mouth to eat it, not on her body. I tried to not give it to her today, but she refused to eat till I did, so I gave in because she doesn't have weight to lose, and she used it to dip a couple things than began her painting project :)

Now a little funny to add to this for those reading. Rob got up to go and start their bath and he always closes the door so that he can get it going etc without fighting the kids off. Well Kayt decided that she was going to get ready for her bath, that's right, off came the diaper. I didn't think anything of it because she always takes her diaper off then asks for help with her shirt. Next thing I know she comes out into the living room and says mommy potty so I got up and turned to go down the hall and well, there was a big ball of poop on the floor, all over Robbie's hands and feet, all over Kaytlin's hands because she was playing with her butt! It was pretty nasty.

Okay since it is 12:34 am I better get off of here. Kaytlin had yet another night terror so we are up in the living room with the lights out watching Barney.

Oh one more thing I found some Barney bedding, light switch cover, and curtains for her room! I cannot wait to get them, she will LOVE LOVE LOVE them! She is such a Barney fanatic!

Kayt had a great morning yesterday morning. She had zero accidents and pretty much was a typical 2 yr old getting into trouble and being a pain lol. It is hard to explain the difference, but there is definitely a huge and noticeable difference between bad days and typical 2 yr old days. THEN she had her nap and that was it. She woke up crying and wanting to be held and nothing more. She cried throughout the rest of the day with break downs and couldn't feel herself peeing or needing to anymore so we had to go back to the diapers. Nothing was different, I have no idea why sleep changes everything for her. It isn't like I can let it go without giving her a nap lol. She will give herself one :)

Last night she woke up with another terror, I don't know why we are getting these nightly again. That's about it for now, we were up till 1:30 this morning so she is still sleeping.

Well it is 1:22 am and Kayt has woken up crying 4x+ now. She had a great day till the evening. We didn’t do much sensory at all during therapy today. Hope tomorrow she will do good since we didn’t. I would hate to think that any therapy is causing an adverse affect on her. Makes me want to sleep in the chair so I can go in and hold her so she can calm back down when she cries. I wish she could tell me what is scaring her so bad at night that she wakes up freaked out like this. My poor baby girl.. I love her so much. Gotta go she is crying again.

Okay sorry it has been so long since I posted. Things in my life are very busy with a new night time job on top of school and the kiddos. Kaytlin does good most days. This morning was horrible and I was sooo ready for her dad to get home so I could go to work. Kaytlin got quite a bit of sensory therapy yesterday and just like all my previous posts about this, she woke up disoriented and breaking down all day long until she took her nap. She cried for no reason breaking down about every 2-5 minutes, she could not understand or follow 1-step commands, she had no clue when I was talking to her unless I actually was physically touching her at the same time… It scares me to do anymore sensory with her. I tried doing more today like I am supposed to do and it didn’t make a difference at all. Things like this makes me want to just let her be and stop all the therapy, but I know it is all trial and error till we find what she needs since all kids are different. I wish so much that she could just tell me what she needs. She was doing great with wanting to potty train and then it just went away, her ability to feel the pee or poop was gone, she no longer is able to go right when put on the toilet like she had been doing for a few weeks now. It is to the point now that she was sitting with the therapists that were here yesterday and her diaper had slid to the side so the pee went down her leg and was going on the floor and she had no clue at all that it was happening. The only reason I found out was because one of the therapists noticed that she was peeing where she was sitting. I wish I could just snap my fingers and make everything that is not right for her, fixed.

Kaytlin’s medical evaluation with a neurological psychologist is July 1^st I am going to call tomorrow to make sure that no cancellations have came in. We are supposed to be on a waiting list, but I still want them to know that I want to get her in there. From what I gather their testing goes beyond just talking to me, they actually do a lot more. I am worried that when we go it will be a good day and they will say oh she is fine. That is her therapists worry too. With Kaytlin it changes hourly sometimes, she is so up and down. When she is on it, she is really on it.. however, that on it, doesn’t stay too long and when she is off, she is really off. The bad thing is that I hope she is “off” when they see her so that we can get her the help for that. We know where she can get to because of how well she does when things are computing in her brain, and that is where I would love her to be able to be all the time, or 90% of the time you know. Okay I am going to stop for now, I will update when I can.

Still praying for Garrett! Hugs to you Katie!

Last night SUCKED! Kayt woke up 3+ times screaming! It seems like whenever she gets her sensory she sleeps bad and just has a bad few days. Today however has gone great so far. She decided she wanted to potty train. I changed her diaper last night around 1am and at 9am it was still dry after being up for an hour. She told me she had to potty so I took her and she went. She is wearing big girl panties right now. I am trying to PT her brother at the same time! Wouldn’t that be great! We have started a sensory diet with her and are hoping that this will help a lot. We are currently working on the oral sensory for her snack with sour patch kids. She loves them! Here’s to today!!

Great news! Well maybe not to everyone, but this is huge for Kaytlin lol. Today she came to me crying and I knew what happened but I wanted her to tell me what happened. She had like 3 fingers in her mouth (which she does a lot lately for some reason), and was balling. I told her she had to take her fingers out of her mouth for me to understand what happened. She took her fingers out and kept crying. I then told her that she needed to tell me what happened. She said, “bubby see tv”, I said oh what happened next? She said, “Patia hit me”. That is huge for her! She actually told me what happened!!!! Now this may not stick, but I don’t care because she was finally able to tell me what happened!!! I was soooo excited I had to hurry and call Rob to tell him what happened because this is huge for her. BTW yes I did take care of the hitting situation (she actually pushed her lol), before I called Rob but I couldn’t wait to share the exciting news with him.
Kaytlin has OT today, I hope it goes wonderfully! This will be her first appt since the eval and we know that the sensory is one of her biggest set backs. She also has gym today at 10 so I gotta go!!! TTYL

Oh my goodness. Yesterday was definitely a rough one. It seems that Kaytlin getting her sensory input the day before made for a very rough day yesterday, this has happened every time she gets a lot of input on a prior day. She cried probably 80% of the day. She was confused, upset, and just couldn't seem to find a comfortable spot. Today has started out a little better, but still pretty emotional today. I know that she isn't doing a lot of the things to get under my skin but oh man the crying is enough to drive a sane woman insane lol. Usually towards the evening she starts getting better but last night she wouldn't go to her dad, which she usually will, and wouldn't go eat or anything. She only wanted me to hold her tight in my arms. After they got a bath she started crying again and went and curled up in her bed. She cried herself to sleep. I hope that once we start the OT next week that things will begin to look up.

Kayt had developmental therapy today. She showed a lot of stiffness and rigidity, something she has never shown before. She has also started lining up things besides blocks and books, she lined up some bottles that her therapist had brought right after they were brought out before we had even realized what she was doing. She was showing many signs of defiance for many different things, she is usually open to doing the therapy but today was a bit different than before. It scares me when I see new things that point towards autism, and add yet another trait of the spectrum into her diagnosis. I am ready to go see the psychologist that our pediatrician is going to recommend, I am ready to see what they think about the traits just now appearing and what the results of the blood tests etc show. I still hold up hope that everything will disappear one day and she will be just your avg toddler. No matter what I love her to pieces and I always will. I will never blame God for this I know that He gave me my special girl for a reason.

 

Again thank you all for your prayers and warm thoughts.

So, I went through a list of the signs of autism that the docs look at. I got it from the mayoclinic web site. Kaytlin meets 9/18 of these. I believe they have to meet 12 of them to be considered autistic, which is why she would be considered PDD-NOS and not autistic

Social skills

• Fails to respond to his or her name - This one she only does sometimes.
  
• Has poor eye contact
  
• Appears not to hear you at times
  
• Resists cuddling and holding
  
• Appears unaware of others' feelings
  
• Seems to prefer playing alone — retreats into his or her "own world" - She has started doing this now, she takes her books or whatever to another place where no one is and lines them up
  

Language

• Starts talking later than other children
  
• Loses previously acquired ability to say words or sentences
  
• Does not make eye contact when making requests
  
• Speaks with an abnormal tone or rhythm — may use a singsong voice or robot-like speech
  
• Can't start a conversation or keep one going
  
• May repeat words or phrases verbatim, but doesn't understand how to use them
  

Behavior

• Performs repetitive movements, such as rocking, spinning or hand-flapping
  
• Develops specific routines or rituals
  
• Becomes disturbed at the slightest change in routines or rituals
  
• Moves constantly - Unless she is sick
  
• May be fascinated by parts of an object, such as the spinning wheels of a toy car
  
• May be unusually sensitive to light, sound and touch and yet oblivious to pain
  

Tonight we were at church and Kaytlin was where the other kids were playing. I guess the boys were too loud and it scared her to the point of hysterics. The girl that was watching the kiddos brought Kayt to me and told me the boys being loud scared her and it took quite a while for Kayt just to stop breathing in really hard, you know like you do when you have been crying really hard, or a baby has and they do those really deep breaths real fast.. Loud kids never scared her before. She would just watch them and stay quiet, now it petrified her. I don't understand why my poor little girl is developing these things as she gets older.. Usually from what I have learned, this stuff starts developing when they are a baby or around 18 months. I wonder if it is because Kaytlin's brain function is 6 months or so behind that it is showing these things late also? You know sometimes it is hard to deal with this, to know what she is going through, and the emotions that she is feeling. I just want to take that fear and pain away from her, and I can't because new things are starting to scare her, so I can't put her in a bubble and prevent everything you know. Just keep her in your prayers guys. I know God is watching over her.

Also don't forget to pray for Garrett and his mommy Katie. I mentioned him previously. He is going through Chemo right now and your prayers are needed for him also. THANKS!

 

I spoke with Kaytlin's pediatrician today. We actually went because Robbie has an ear infection, but took the opportunity to talk with her about Kaytlin also. She thinks that Kaytlin will benefit greatly from Hippo therapy (hoarse back riding therapy). She is going to have her staff look into getting that for her. She also is going to have a neurological psychological evaluation done, so that we can get an actual diagnosis of whatever is going on with Kayt. Her pediatrician is going to give her a diagnosis of DD, Developmental disability, because her delay is more than obvious now. This will allow us to get her on the Medicaid waiver waiting list. She thinks that Kayt is PDD-NOS, but because she does not deal with Autism as her specialty she wants to send her to someone who only concentrates on that. Today was the first day that her ped really noticed things besides the delay. I could see it on her face, usually she will smile and say well most 2 yr olds do that (with behavior) but she didn't do that today at all. That is about it for now; I just wanted to let everyone know what was going on and what the pediatrician said today.

 

God Bless you all and thank you for your support and prayers.

Okay so I am either coming to the realization that I am in denial or this is just temporary and I will be in denial again soon. First I wanted to say that Kayt has had a very rough day today. She was either crying or beating up on someone, not much happy time today. It has definitely been an off day for her, which they are not that often anymore.

So to what I first was saying. I went to Wal Mart tonight to go grocery shopping alone and while waiting to pick up Kaytlin's bean bag at site-to-store a lady was there and we started talking. She had a 2 yr old granddaughter with her that is only 2 months older than Kayt and she was just talking and being a little cutie pie! Anywho her comprehension just blew me away. I am not around other children Kaytlin's age so I am not used to anything more than what Kayt knows. It really made it hit home just how much Kaytlin does not comprehend about everyday life. She doesn't even know how to tell me what hurts if anything is hurting, if she falls all I get is her needing to be held, but I have no idea what to look for because she cannot tell me where she hit. Anywho what made this hit home.. So I was telling this lady that it was neat to hear her granddaughter talk because of Kayt having the speech delay and we kept talking and then after a few minutes she said, are you sure she doesn't have autism… I said well she was just given a provisional diagnosis of autism but I am not sure that she has it… and the lady says well my 10 yr old does have it and everything you just said to me is exactly how he was. She said, he has aspergers.. he is social like I said Kaytlin was.. I have had so many people say that she is fine and nothing is wrong and she will catch up that when someone actually says that, that has been where I am now, it makes me realize how much of denial I am in. She even knew what I was talking about when I said that Kaytlin looses words, right after I said that was when she first said that it sounded like autism.

I know God gave me my princess for a reason, and she has her special needs for a reason, I just wish that we could have the final answer and move on from there. This waiting sucks for someone who wants everything right now lol. Okay I am done now, I just wanted to share this little awakening that someone at Wal Mart gave me. You know I really think it was God that had me waiting as long as I did for my site-to-store for a reason… I mean how likely is it that I meet someone who went through what I am going through where people are usually not just sitting.

I better let you guys know

Today during Kaytlin's therapy they were working on animals again. Kaytlin was saying goodbye to all the animals as they were being put away. She was down to the last two, a duck and a cow. She picked up the cow, looked at it all puzzled, then reached and grabbed the duck with her other hand and said good bye duck and put it in the bag. She proceeded to look at the cow in her other hand and then looked at her therapist, she had forgotten what it was.

I wish someone could tell me why in the world does she always lose cow? What is it with cows?? It is so frustrating that we don't know why. I am hoping it is only because of sensory. I keep saying that I don't completely agree with the diagnosis of autism simply because she shows all this progress and I think everything is working itself out, and then boom, she looses a word. It isn't like this is a first time thing either.. She even baffles her therapists. Okay rant over, sorry I am just so confused with this.

EEG results

Kaytlin's pediatricians office called me today and the EEG results are in.. Drum roll please…………………… There are no signs of seizure activity!! Woohoo. I also got a call from Kaytlin's speech therapist today and she will no longer be coming after next week for her own personal reasons. She needs to bring her clientele down to being just around where she lives, so I am hoping that we can make Kaytlin's developmental therapist come 2x a week instead of just once. Kayt loves her to death! Well not make her, but you know what I mean lol, change it to that hehe. Today I took Kayt and Patia (the girl I babysit) and Robbie to mommy and me at the cheer and dance place out here, it was great for Kayt because there is a lot of sensory input with the jumping etc. She had a blast! They will be going once a week, sometimes 2x a week for only 35 bucks for all of them!! That is 35 a month too! It lasts 40 minutes each time and we are allowed to go both times during the week or just once, whichever we want without paying more. Kaytlin has been doing quite well lately. We haven't had as many breakdowns or anything, just a snotty little 2 yr old lol. Sorry I haven't updated much, I am taking 2 classes for college right now and one is doing a semester in 5 weeks the other is in 7 weeks. Hope everyone is having a wonderful day!

 

Okay this is going to be about Kayt, but I also need a little vent here, which will make any other mom know they are not alone in these feelings I am having. First on my precious girl though.

Today we went to get her EEG done. She did wonderfully, she was very compliant. I kept her weighted blanket on her lap and also explained to the technician about her disabilities. He was awesome with her! He continued to talk to her and let her help with everything. Basically keeping her thinking she was in control of what was going on. It was an overall much better experience than I expected. She also was going on 4 hours sleep like I was/am. That helped a lot too I am sure lol. I don't know the results yet but will update when I do. During the testing there were many times where it seemed that she was not hearing him talk to her she was really zoned out, but not confused. The other times she was very much into what was going on and what he was talking about and was saying yes to everything, like she always does lol. This evening was very very hard for her dad and I. She could not handle anything, she didn't know how to tell us what she needed or wanted, she cried constantly, didn't want to be put down, but we weren't holding her the correct way. It was one of those nights that I wish people could see what happens that think it is in my head.

That brings us to my little vent. You know I don't expect everyone to understand how we feel, or to give sympathy, but I can't stand that so many people want to doubt what I am doing and want to criticize us trying to get her help. So many people want to say oh she looks just fine, I didn't know you had to look a certain way to be sick? Since when do people have to look a certain way to have mental issues? Since when is it wrong to try to get my daughter the best possible chance at a normal life that I can? I know that a lot of people think that it makes people feel better when they say that there is nothing wrong with the children, but I can tell you it doesn't make me feel any better. To me it feels as if you are degrading what I am saying, it makes me feel as if you think that I am wanting my child to have an illness, or to need to see all of these therapists. My husband tells me not to listen to what others think, but that is easier said than done. I try so hard to not see the things that I see and to tell myself that she is getting better over night, but no matter how much I tell myself, I know that doesn't make it so. This is not directed at anyone in particular, this is just what happens sooo often. I guess it goes with the pregnancy questions and comments that just get under people's skin when others don't realize they are doing it. Like some people don't like their tummies touched when they are prego but so many come up and just touch away, others don't like to hear the phone call, you haven't popped yet, for the zillionth time, but people still do it not meaning to irritate anyone. No, I am not pregnant and those things didn't bother me, but I know many people that they did lol. Sorry for the frustrations, I just needed to get this off my chest.

If there is anyone reading this that wants to comment please feel free, I don't mind and I do publish them. You never know if your comment may touch someone's heart to make them feel not alone. Aloneness sucks. I know that God is with me all the time and that is not what I mean by "alone". I am referring to going through something and feeling as if others are not having the same emotions as you are.

Thanks for reading! Once again I appreciate everyone's prayers and God Bless everyone for caring and keeping up on my Kayt.

So Kaytlin has now lost knowing what a horse is. She can no longer point one out or tell you that it is a horse when she sees it. This is so frustrating. I guess God was just giving me a break for those 3 weeks of her not losing anything. We got the full report today from her psychologist, hopefully we will get an OT out here that will come and see her. We also have our EEG tomorrow. Please keep us in your prayers.

 

God Bless all of you for thinking of us!

 

PS Please keep Garrett and his family in your prayers. He was born Jan 07 and has been diagnosed with a serious cancer.

Diagnosis

I spoke with Kaytlin's psychologist today and she has been given a provisional diagnosis of autism to be re-evaluated at the age of 3. Because children can change so much at this stage they do not want to make it permanent without knowing for sure. I am thankful for at least the provisional to be able to get her some help with SSI and the Medicaid waiver. She is also wanting to see if the occupational therapy will have more of an effect with Kaytlin's sensory disorder. It may be that if we can tackle the sensory then she would be able to learn and retain more.

 

Last night Kaytlin woke up in a screaming fit dazed and confused again. Her speech therapist was curious if her ability to retain and her success would go down once she was no longer sick, and it has. She was put on antibiotics Saturday and Monday started the journey to confusion again. I guess when children are sick they are more relaxed and able to retain more. Go figure that being sick can actually be a good thing in children with disabilities.

 

Well I guess this is all for now. For those that are keeping us in your prayers it is greatly appreciated. I think because we have known of the possibility of this diagnosis we are not shell shocked. No matter what label she has, she is always going to be my little princess with an attitude lol.

Yesterday Kayt had a few confusion episodes. After speaking with her speech therapist today we went and spoke with Kaytlin's pediatrician to find out about possible seizures. They are going to schedule an EEG and that way we can see if that is what is going on.

The episodes: Yesterday morning she was sitting at the table with me and asked for some juice, I answered saying Please, and she just stared at me blankly. Usually she will say please if we prompt her to. I did that 2x and still nothing so I said okay we can try it later, I didn't want her to get too upset about it. I went to hand her the juice and she forcefully pushed it away and then broke down crying.

The second episode occurred while her developmental therapist was here. We were in the middle of play therapy on the ground and Kaytlin just got very confused in the middle of play. She started looking around and called me Patia (the girl I babysit) and then called her therapist mommy and then started pointing at her room saying Patia. Then like nothing she snapped out of it and went back to being where we were and doing her therapy. During this session she also forgot what a cow was. She called a dog a cow and could not point out the cow in the book.

Just a quick update. Kayt has had a very rough couple of days. She isn't feeling too well at all. She has had a fever off and on today and yesterday. She is very very fussy. Being held is mostly what she wants. She is very disoriented a lot today. Will update later.

Kayt had therapy today, it went nicely. Her attention span is definitely getting shorter lol. More evidence that she is becoming that wonderful 2 yr old that I knew was hiding inside! I cannot wait to see the results of the deep pressure therapy. Her weighted lap pad isn't going over that well, she really doesn't like having blankets on period. HOWEVER I did put it on Robbie one night and he didn't think he could get up! It only weight 1 1/2lbs so it is very light. He laid there and cried instead of standing up in his crib crying, which helped him to fall back asleep faster! I wish I would have known about this oh 6 months ago when I was dying for sleep lol.

Friday afternoon turned into a 3 hour breakdown! Yes you read that right, 3 HOURS!! It sucked, she would be okay for about 2 minutes and then come back to me just losing it again. Ugh kids lol.

Saturday went great. We had the best shopping trip we have ever had with the kids! Both of them did wonderful and didn't fuss at all the whole time. It was a diff type of kids cart though, so I think that was it, they were side by side and facing forward.

Sunday went great also, she went into the preschool class with the bigger kids for about 80% of the time, the rest she had come back into the nursery with her dad and myself.

Okay she had a breakdown yesterday, last night to be more accurate. It has been a while since we had any and it has been pretty nice. I mean we have had the usual 2 yr old tantrums, but none of the breakdowns anywhere similar to the previous video. This one was quite a bit worse than the video. I had to hold her tight with her arms locked down in my arms and rock her. It worked wonderfully! She even took one arm out to wipe her nose and then put it right back in my arms to be pinned down.

Today she had her occupational therapy evaluation. She actually broke down in front of the therapist too. I learned a lot about different ways to apply deep pressure for her, which is what she is needing. Unfortunately there is no OT's that specialize in SPD to come out here and help us, but we are hoping for at least once a month at the least. The sensory issues that Kaytlin has may very well be the reason behind her delays. It was explained as her brain is trying to make sure she is okay and because it takes so much longer to process that her brain isn't able to concentrate on the other things to learn and retain them. At least we have more of a start now than before. She also told me a few ways to try to help Kayt with going out to eat and also with the noises that really bother her. I hope it works. The suggestion is to introduce her to headphones and let her listen to music so that she is concentrating on that and not the outside noises and commotion. This would be awesome if it works!

Kayt woke up crying from her nap this afternoon, which is new for her. I think she just had a bad dream though. I wish she could tell me what is wrong when she cries. She doesn't understand what I am asking when I try to find out what is happening. She did great today, aside from getting into everything! I swear she is horrible about getting into things, as soon as she thinks I am not looking she goes right back to what she just got in trouble for getting into. As I think about it I would say she acts about 6 months younger than she is. This was also said by one of her therapists when she started over generalization at 2, I was told this was something done between 1 and 1 ½. I can't wait to get her lap pad, it is supposed to be shipped today!

Kayt had a bit of a rough morning while we were at church in the nursery, however when we got home and she napped she woke up just fine again. Maybe being away from home puts stress on her that she can't handle? Maybe that part has to do with her sensory issues? So many questions just waiting for answers. She is learning by leaps and bounds right now and does great as long as we are at home or in our van, once outside of the home that's it. Hopefully the OT will be able to help us with these things? That's all for now, she is laying on the floor falling asleep.

She is still going strong! Nothing new to report. That is definitely a good thing though! She has been a different girl since Sunday after her nap. I still think that God is working in her brain right now and fixing it. We still have the sensory issues which we can hopefully address next Friday when the OT comes. Her speech is doing better and she is even impressing her therapists at how different she is this week compared to last week. Thank you Lord for touching my baby girl.

Well today started out nicely. Although I knew something was up when she didn't eat her breakfast. Funny how that is a big indicator of how her day is going to go. She did pretty good all day, aside from the typical 2 yr old smart butt. For some reason once this evening hit she became weird again. She wanted me to hold her, however I couldn't touch her, play with her, or talk to her or she would become quite irritated. I even tried tickling her but she didn't want any of that. She was pretty fussy up till around 8:30 tonight. It started about 4pm so about 4 ½ hours of her being really fussy, not knowing what she wanted, or what she was crying about, but she of course expected us to know. I mean don't parents know everything lol. It's 9pm now and she seems to be doing much better. Hope she sleeps well tonight, she hasn't woken up scared for about a week now, let's keep this record up!

Woohoo I just bought Kaytlin a Barney lap pad for 33 bucks! Can't wait till it gets here.

Great till we went out lol

Kayt did really well today until we went shopping. We had to run to Wal Mart because Rob's boots were literally cracking with every step and he has to have them for work. My poor guy was trying to wear them as long as possible, dork…lol Those are your feet, take care of them honey. Anywho as usual she was upset just about 90% of the time we were gone. She hates the cart, she hates to hold hands, she hates to have to do anything but go where she wants when she wants and has to continuously move. No stopping to get anything.. Gotta love her  Did I tell you I love my daughter hehe.. She keeps us on our toes, that's for sure!

For those that asked and were wondering, here is what the weighted blankets are:

http://www.weightedblankets.us/servlet/Categories

I guess we have to get her a blanket, lap pad, and vest. Sheesh lol.. Hey if it works it is worth it. This website was shown to me by a friend, and has been the cheapest I have seen. If anyone needs one there you go lol.

 

Sorry I missed yesterday, I went to bed early. Kaytlin is still doing wonderfully. I just hope this continues J She has her moments, but nothing like what we were experiencing. She did great during therapy today also. If anything changes I will update again tonight, God Bless you all!

What a wonderful day!

Just a huge WOW.. Today has been beyond wonderful with her. This morning was a bit rough, but after her nap I had my 2 yr old back! I mean it was awesome! The only thing lacking was some communication, but she even asked to sit on my lap! She said, "Mommy sit lap" and she hasn't done that before. I pray that she continues to improve and that God keeps His healing hands on her. She has been happy, playful, fun, just everything I knew she was. My husband and I even talked about it this evening. He too noticed a huge difference in her tonight. While she played with her blocks today she noticed when her brother knocked them down and she noticed that he was taking them, she made noises and knocked them down.. Praise God it was a beautiful afternoon and mommy needed it! Today has been rough for me emotionally (before her nap), there is just so much going through my head at once and I will say it gets to you every once in a while. I was praying a lot at church today for my girl, it seems that is about all that is on my mind lately.

A little view into our breakdown world

I just wanted people to see what I am talking about, sometimes they are worse, sometimes better, but this is a little preview into the sadness that comes into her eyes when she has a breakdown out of nowhere. This does happen often on her off days. The reason I didn't pick her up and comfort her is because I had just tried that and she slid off of me because she didn't want me to comfort her, so I had to let her be till she was ready for comfort.


http://s90.photobucket.com/albums/k272/robandshell/?action=view&current=0320091609.flv

I did not post the actual video because I don't want it to just play on here, the video is in our photobucket account.

Sooo many times her dad and I are lost as to what to do to help comfort her, with her inability to communicate we are handicapped at "fixing" what is wrong.

I will write about how she has done today later on tonight. God Bless you all for reading and keeping up to date on our Kayt.

Addition to yesterday and today’s info

Well yesterday after Kaytlin woke up from her nap our day kinda went from Great to icky. She was very fussy, very easily breaking down, and it just sucked. I felt so bad for her but nothing we would do would make her happy. The really bad thing is when she feels like this she doesn't want to eat either so nothing but a few bites of lunch and dinner.

Today we went to the Indiana Autism Expo! I cannot begin to say how excited and happy I am that I went! My husband went with me too and he also feels that it was well worth the hour drive. We learned sooo much! They have service dogs for children starting at age 5! I also learned about a Medicaid waiver that she needs to get on. I just cannot believe how many resources are out there for children that have developmental disorders and autism etc. I thought we wouldn't fit in because of Kayt not being diagnosed with autism, but every time I talked to someone they knew exactly what I was saying! Most of the moms I met who had children not diagnosed till they were 5 or 6 also had the same issues with their children as I have with Kaytlin. Just wow you know. We also went to a booth that had weighted lap pads and blankets and shoulder things. Our therapist had recommended looking into getting Kayt one and she happened to be having a breakdown at that moment while we were at that booth. She was in my husband's arms and I picked up a weighted lap pad and put it over her shoulder and instantly she quit and her whole body relaxed and she went limp and laid her head down on my husband! Are you kidding me!!! It was like a miracle! Those blankets need to be called miracle blankets lol.

Sorry I forgot to put how she has been today, I am just so overly excited about all the info I learned today and how I feel not alone anymore! She has been more off than on today, however not too bad if that makes sense. She had quite a few breakdowns today, a lot of zoning out. I wish those blankets were not so expensive. I cannot believe how much they cost; I know we don't have 200 bucks to pay for a blanket. As much as it will help, we really don't have it. They need to have a state place or something that helps pay for sensory needed items like the weighted blanket or vest. I may have to try ebay, my only worry with that is not knowing exactly what I am getting.

What a nice day today :)

    Kayt has had a great day today! It was much needed for both of us lol. She woke up in a great mood, hasn't had any breakdowns, has understood her usual, and listened very well. I am glad she is having a good day because I had to take her in for her lead testing.

Now when I say she is comprehending things, I don't mean everything, I mean her usual. For an example, go sit in your chair, share your drink with bubby, bubby needs a drink. Simple things like that. Today a lady asked Kaytlin if she liked her brother, or something to that extent and Kaytlin just looked at her lol. I had to explain that she doesn't understand most questions. I can't wait till I can ask her how old she is and she will tell me, or what her name is and she tells me. If you ask her that now she simply repeats the last word lol.

I love my little girl to pieces and am very thankful for her, she teaches me to enjoy the smaller things in life a lot more than I already do. You just never know what you are going to be handed. She also teaches those around her to not judge a book by its cover. On the outside she appears completely normal and so people assume that she is, I mean why wouldn't you. On good days it is very hard to tell she is behind. On bad days, it looks more like an undisciplined child than anything. I know that I don't look at kids acting out as undisciplined anymore, you never know if it is from a mental illness or from lack of discipline so make sure not to pre-judge.

a picture of my baby

March 19, 2009

Today has definitely been a rough day for my little girl. Waking up in a great mood as usual, she comes out to me and just seems a little lost. It's kind of that I am happy because I am oblivious kind of happy. I make her some oatmeal for breakfast and she wants to be fed today, which she usually wants to do herself. We sit out in the living room in my chair (which also isn't usual, we usually sit at the table), and she is doing okay. I then go to give her another bite and she starts fussing and points at her drink. I show her the sign for drink and ask her to do the same. She started crying and got really upset, I then tried to give her the drink and she threw it down on the floor. After picking up her drink and trying to give it to her again, she pushes it away. The next thing I know her bottom lip sticks out and she gets this horribly sad look on her face and her lip starts to quiver and the tears start rolling. It broke my heart. There was no reason for it at all, the temper tantrum was for the drink and that was over. I put my arms around her just to help her feel more comfortable and loved. Once she is back to not crying she turns around in my lap and takes her drink as if nothing has happened. Our mealtime this morning went on with a bit of fussiness and fighting on her part, but we made it through. She had been really fussy and out of it earlier so I knew this was a bad day before we started. I think I will start calling them hard days because bad days just sounds so icky. She had therapy today as well and I made sure to pre-warn the therapist about Kaytlin having an off day today before she got here. Too much pressure and Kayt would have clammed up and that would have been it. Therapy was a little weird to say the least. Kaytlin has forgotten her animals and quite a few of other things. It felt like therapy from the beginning all over again. Her therapist luckily has been with us so long that she notices all of the things that I am talking about also. I am so thankful for her. I know she has Kaytlin's needs in her heart and mind as she does things with her. We are half way through the day and naptime is over so I better go and get her up. Oh and another thing Kaytlin is hooked on today is that she is repeating the last word of everything said. She looks so lost as she does this too, as if she doesn't get what you are saying. Her little brother climbs all over her today and she acts as if it isn't happening, normally she would be saying "Bubby" and laughing, today she acts as if it isn't happening at all. I wish someone could just fix it, make it all go away. I know I am doing the best for her and that as far as she knows everything is normal, however I know it isn't the best and that she could enjoy so much more if she didn't have these delays and sensitivities. I love you baby Kay.

What this is for

I need a place to journal, to be able to remember what is happening on a daily basis with my Kayt. It seems that she loses quite a bit of language and gets more confused on days. Maybe I can figure out if it is linked to something that happens or if there is a similarity on those days. Who knows maybe it will all dissapear. I want others to know they are not alone in the confusion of wondering if your child is autistic, or if they will snap out of it, or if you are being overly sensitive to things, and the many other things that run through your head when your baby just isn't right on track. I will now tell you a quick up to date to get you where we are today so that no one feels lost as I go on about the daily happenings.

Kaytlin was born 1-22-07. I was 39w and it was a quick and easy birth. The pregnancy wasn't that easy and my fluid was quite low at one point, but she did great. She scored great and was ready to come out.

I thought she was doing great, she passed all of the papers easily when asked at her well baby checkup. She crawled at 7months walked at 9 months, she has always been a very physical girl. From climbing to jumping she has been advanced. She has no fear of going on the big things at the elementary school to go down the big slide, she just bypasses the little slides.

She is scared of going backwards, water going over her head, and loud noises. The vacuum terrifies her, and I am not over exagerating. If she sees the vacuum she gets a look of sheer terror, maybe compare it to the look in an adults eyes that has a gun being held to their head. Needless to say I only vacuum if she is asleep or daddy is home to take her in her room. The blender, the hairdryer, public restrooms, drills, all of those things terrify her. I just thought she would grow out of it, she is now over 2 yrs old and nothing has changed with those terrors.

Vocabulary started out wonderful, she has the rainforest high chair and there is a butterfly on it so when she was still in her high chair she would turn around and say butterfly and point at it, she knew the word duck, mom, dad, and many others. At some point I must have missed it, she lost many of them and by the time she was 18 months old, she only had about 5 words.

I went to the Indianapolis childrens museum for the citywide babyshower. There is where I met someone from First Steps. Indiana's early intervention. What a lifesaver! I cannot imagine where I would be today if I hadn't had her evaluated. If you are reading this and wondering if you should, do it! It doesn't hurt anyone but your child to not do it. It doesn't matter what anyone says, including daddy, because most of them are against the evaluations for some reason. Mine was and thought I was just stupid for doing it. The thing is that you may hear your child is perfect! Great now you can enjoy and not worry instead of continuing to wonder right. Okay enough lol, so they came to our house and of course confirmed what I knew. She was behind with vocab and alittle of social. We got set up with a developmental therapist 1x a week from 18 months on.

Kaytlin loves her therapist! It seemed as if things were moving right along and she started learning how to do puzzles and many other things she didn't know how to do. Fast forward to her first review...while she was advancing she still was not fast enough, a second therapist was added, this one with a masters in speech. Her first one has a bachelors in speech but is a developmental therapist. So now she sees each one every week.

Kaytlin has unfortunately started to regress quite a bit now. It is really scary I won't lie to you. If not for my God, my husband, my online friends, my in real life friends, my church, and the resources I would be completely lost. We have many on and many off days. You will see what I mean as I blog each day to explain the events of the days. Her past two meetings have shown a huge regression, and it saddens me. Not because I expect perfection, but because I want the best for my baby.

Kayt had her first eval with a psychologist yesterday and will be evaluated by an ocupational therapist to help with her sensory issues. Kaytlin has a very low tolerance for noise and a very high tolerance for pain. Things that would hurt the avg person does not bother her at all. She also has issues with understanding other people's emotions. She does not understand if I cry, get upset, or anything aside from laughter and smiling. This makes it hard for discipline, just a tone change means nothing to her.

I hope this can help at least one other parent feel they are not alone, or another parent feel empowered to get EI for their child.

God Bless you all.