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.