12/29/08

Well, Christmas has come and gone and New Years is right around the corner! Lily had tons of fun opening her presents and surprisingly, didn't need ANY assistance :)
Lily is continuing her progress, but I think we've hit a slow patch. Not a big deal of course, but it only gets harder to watch her struggle and frustration with communication. She often starts rambling, then screams and throws herself on the floor because she just doesn't know what else to do. There are days that are better than others, but she's also at the tantrum age. She wants what she wants when she wants it and to not be able to express her wants means she tantrums more than the norm because even simple requests are not met with her expectations because I don't know what it is that she wants and she doesn't know how to ask.
On a more positive note, tonight she....

She pointed to something she wanted!!!! I could not have been more excited!! I knew what she wanted of course (her blanket that was out of reach in her crib), but I asked her what she wanted and she she signed "want" and pointed to her blanket! I hope she will continue to do that. That has been something that I've wanted her to do for SO LONG. She is also routinely saying bye-bye when she waves (not always clearly, but she does her best). I also asked her "who's that?" and pointed to Anthony and she said "Da da" which is awesome that she finally understands "who" because that can sometimes be hard for kids on the spectrum. My name is still "Bob" most of the time because she still has a hard time saying "ma ma" a lot of the time.

As far as speech goes, we've been working on getting her to say sounds for objects more spontaneously. If I ask her who her characters are she will say 't' for tinkerbell, etc. She also was able to make the "F" sound today (for Foofa, another character). I was excited that she did that one on her own, she has a harder time with mimicking the sound.

Daddy has been the one getting up with her in the night now. He has been able to get her right back to sleep, as opposed to the half hour to 3 hour stretch that it takes me. She just gets too excited when she sees me and can't get back to sleep. Which brings me to the whole separation anxiety thing that is not getting any better. I'm hoping that we can do something about that soon, because it's just not good for her. I'm not sure what can be done, don't some kids just grow out of that? It seems like such a far cry from the days when she didn't care if I was there or not. I could come and go at any time and she didn't take notice at all. Anyone caring for her would do. She didn't really have a preference. It's nice now when I come home and she gets so excited to see me and covers me with affection, but I'd like to be able to use the bathroom without her having a complete meltdown. Oh, how I would love a happy medium!!

12-20-08

Hard to believe that Christmas is just right around the corner! Lily has been getting a few gifts in advance here and there. It's more fun for her that way, since she can easily get over stimulated. My sister gave her a gift tonight (a Backyardigans playset) and Lily was very excited and running around all over the place.
Today Lily gave her most significant communication yet. Dad's feelings may have gotten a little trampled in the process, but the progress was something to be celebrated. She said "mama up" (which by itself was a big deal) for me to pick her up and then proceeded to wave bye bye to Daddy, indicating that she wanted him to leave the room. When he didn't, she then leaned in, gave him a kiss, waved bye bye again and then tried to push him away. Since communication (verbal and nonverbal) are a struggle for her it was awesome to see her put all that together. Oh the small things...though they'll never be small to me!

12/17/08

Last night Anthony and I had our first meeting for RDI therapy. It seems like it's going to be a tough thing to do initially, since it's very much "this is what we are going to do right now whether you like it or not" kind of a thing. It would be tough to do with any two year old, let alone one as strong willed as Lily! It will be a good thing in the long run though.

We had another meeting with the Dr. we are seeing for Lily's Floor Time therapy. This is the therapy where you are a participant in her world and she leads the play. It has been very beneficial to her so far and her attention span, eye contact and interaction have greatly excelled since I've started to do that with her. The Dr. was very impressed at all of her progress since the last time that we were there. We will be having a grad student work with her a couple of times a week starting on friday. Lily really has responded positively to most any intervention that we have done with her, so I'm looking forward to tons more progress!!

Luckily, Lily continues to progress though she hasn't been at therapy for the past week due to her cough. I'm always so proud of how much she really tries. Socially, she has excelled the most recently. She has been seeking my attention more and has been so much more engaging. She has wanted to "share" her food and toys with us. She has started to look to us to see our reaction to things as well. Her separation anxiety has gotten worse though, so we'll be working on that as soon as we get a behavior plan together. It would be nice if I could leave the room sometime without her having a meltdown. A lot of that has to do with how long she's been sick lately. Hopefully that will turn around!!

12-11-08

Since the last post, here are some cool things that Lily has done, some of which is a one time occurance of course:

• She got into the bathtub and said "Bath"
• We asked her where the moon is and she pointed out the window at it and said "dare"
• We were at a friends house and Mickey's Christmas came on the tv (her favorite) and she danced around and said "christmas"
• Anthony taught her awhile ago to put her arms up in the air when he asks her, "how big are you?" Then Anthony usually says "SO BIG!".....well this time when he asked her she said it for him!
• Lily has been cracking herself up lately. She'll just be playing with her toys and start laughing hysterically, so much so she gives herself the hiccups! It's my absolute favorite sound.
• I asked her if she wanted to watch a show on tv and she said "yes", without nodding (big for her)
• she finally dances around to music, particularly that song they play in Madagascar that says "I like to move it move it" (its her favorite)
• just before going down the slide, she said "up" (she doesn't understand the concept of up and down yet, lol, I still think it's cute)

Lily has continued to progress in her speech, though there's still the mountain to climb at least she has started with a few steps. Unfortunately, she is sick....AGAIN. I'm not sure what to do about her constantly picking up everyone's germs. I need her to go to therapy and also be around her friends socializing but she's always getting sick. This time she has a fever that continues on and I've been having to keep her pumped with meds to keep it down. I've never had that issue before, so it's worrisome to me (though I'm not suppose to bring her in to the Dr. till day 3 of a fever, so they say and we are only on day 2). She's very congested and has been miserable in the mornings but so far she has been pretty good once she's actually up for awhile (easier to breathe then I guess). Yesterday was a no-nap day, though she needed one desperately. I think it really freaks her out to not be able to breathe as she would normally (understandably) and laying down multiples it, especially with no distractions.

It feels like a never ending cycle: bring Lily in for therapy or playgroups...sick...stuck home having to cancel therapies...better...bring her back...sick...etc. etc.

Last week I brought her to a Kindermusic Winterparty. It's a place where all the kids dance and sing and play music (as much as toddlers can) but it's more structure than Lily can handle (sitting in circle, marching in a circle, sitting for any length of time...though it is geared directly for her age group and the other kids do great) and it really reminded me where Lily is at, as I watched kids half her age able to follow simple instruction, and kids of every age able to sit on their moms lap (I had to chase Lily the whole time and stop her from taking other kids things and getting into things she shouldn't). They dumped "snow" on the kids (a basket of tissues) and afterwards almost All the kids picked up the tissues and put them back in the basket and Lily went over and dumped it everywhere again. Now reading that it sounds pretty funny actually, but when you are there...it's not. I brought her there because it was a free event and Santa came and I really wanted to see just how she would respond to sitting on Santa's lap.....she didn't care for it to say the least. I also wanted to bring her there to see how she would respond, since I've brought her to a similar environment last september, she was slightly better this time, but not by much. Maybe next year.

We had a playdate at a friends house a couple of days ago. Her friend really tried to engage her and Lily was having none of it. Her friend didn't give up though! She was praising Lily for doing a puzzle, tried tickling her (Lily tried to run away but her friend was gently persistent). She's a few months older than Lily, but to me, seems very advanced for her age. She talks in full sentences and is VERY social. She was picking pretend apples out of a pretend tree and giving us each an apple to eat! It was very cute. She insisted on giving Lily hugs and kisses, which Lily tried to ignore initially, but did eventually except with some direction. It's possible she was having an off day, as I have seen her really engage her friend in the past. It's really hit or miss most of the time. I really think the interaction is good for her. Too bad she's sick half the time!

12/2/08

Trouble sleeping...again. It was so nice to have her on some cough medicine that had codeine in it while she was sick because she actually slept through the night every night while she was on it. Now that she's not sick anymore it's back to sleeping difficulties. On a positive note she had a GREAT day yesterday, despite her lack of sleep. She was quite the little chatterbox and talked up a storm the first part of the day using all kinds of words, too many to list actually. Here are a few things she said: Up here (when she was up on the window sill), turtle, car (and actually pointed to one when she said it!), yes, mickey, mommy and many more. She repeated a lot of what I was saying. She talked so much that others were pointing out what she was saying at playgroup and at occupational therapy. On the crummy side of things, after nap she was not able to say things again and she became very upset. Here is some information I found on the net to explain why she has so much trouble with speech. She has apraxia, which I believe (of course) was caused by her vaccinations.

What is apraxia of speech?
Apraxia of speech, also known as verbal apraxia or dyspraxia, is a speech disorder in which a person has trouble saying what he or she wants to say correctly and consistently. It is not due to weakness or paralysis of the speech muscles (the muscles of the face, tongue, and lips). The severity of apraxia of speech can range from mild to severe.

What are the types and causes of apraxia?
There are two main types of speech apraxia: acquired apraxia of speech and developmental apraxia of speech. Acquired apraxia of speech can affect a person at any age, although it most typically occurs in adults. It is caused by damage to the parts of the brain that are involved in speaking, and involves the loss or impairment of existing speech abilities. The disorder may result from a stroke, head injury, tumor, or other illness affecting the brain. Acquired apraxia of speech may occur together with muscle weakness affecting speech production (dysarthria) or language difficulties caused by damage to the nervous system (aphasia).

Developmental apraxia of speech (DAS) occurs in children and is present from birth. It appears to affect more boys than girls. This speech disorder goes by several other names, including developmental verbal apraxia, developmental verbal dyspraxia, articulatory apraxia, and childhood apraxia of speech. DAS is different from what is known as a developmental delay of speech, in which a child follows the "typical" path of speech development but does so more slowly than normal.

The cause or causes of DAS are not yet known. Some scientists believe that DAS is a disorder related to a child's overall language development. Others believe it is a neurological disorder that affects the brain's ability to send the proper signals to move the muscles involved in speech. However, brain imaging and other studies have not found evidence of specific brain lesions or differences in brain structure in children with DAS. Children with DAS often have family members who have a history of communication disorders or learning disabilities. This observation and recent research findings suggest that genetic factors may play a role in the disorder.

What are the symptoms? This is Lily all the way...
People with either form of apraxia of speech may have a number of different speech characteristics, or symptoms. One of the most notable symptoms is difficulty putting sounds and syllables together in the correct order to form words. Longer or more complex words are usually harder to say than shorter or simpler words. People with apraxia of speech also tend to make inconsistent mistakes when speaking. For example, they may say a difficult word correctly but then have trouble repeating it, or they may be able to say a particular sound one day and have trouble with the same sound the next day. People with apraxia of speech often appear to be groping for the right sound or word, and may try saying a word several times before they say it correctly. Another common characteristic of apraxia of speech is the incorrect use of "prosody" -- that is, the varying rhythms, stresses, and inflections of speech that are used to help express meaning.
Children with developmental apraxia of speech generally can understand language much better than they are able to use language to express themselves. Some children with the disorder may also have other problems. These can include other speech problems, such as dysarthria; language problems such as poor vocabulary, incorrect grammar, and difficulty in clearly organizing spoken information; problems with reading, writing, spelling, or math; coordination or "motor-skill" problems; and chewing and swallowing difficulties (Lily has always had problems in this area).
The severity of both acquired and developmental apraxia of speech varies from person to person. Apraxia can be so mild that a person has trouble with very few speech sounds or only has occasional problems pronouncing words with many syllables. In the most severe cases, a person may not be able to communicate effectively with speech, and may need the help of alternative or additional communication methods.

I believe that this will be Lily's biggest hurdle. She is doing so well in other areas. Her social skills are fantastic. She got so excited to see her friends in playgroup yesterday that she nearly knocked one little boy over! She is all about hugs and kisses and really enjoys the company of other kids. Last night she got out her baby dolls and fed them their bottles and pacifiers. She even gave one a big kiss on the lips! She was having so much fun with them that I put them in her crib for her to sleep with and she got so excited like she was having her own little slumber party! Today during speech therapy she actually said "Elephant". Of course most of what she is able to say (especially clearly) is when she doesn't have to consciously try to say it (she wasn't asked to say it). Anthony told me that over the weekend he was hiding under a blanket and she lifted it up and said "Peek". My one-hit-wonder is really progressing!