sleep or a movie?

tonight is the first night that my baby girl fell asleep on her own. i am so excited and hope that all the hard work on the sleep training is starting to pay off. i've been on this road, reading books, fighting with myself on how to go about getting her to "self soothe", how and if to ween her off my breast milk at night, for weeks now. so many people have advice for me like don't give in, don't pick her up, let her cry it out. i've given up so many times, thinking ok, this time you win.

tonight is also the first night that D and i watched a movie, without once getting up to soothe or pat maya. i thought for a second that perhaps i too should go to sleep. but for once, maya fell asleep and i was awake, not tired and not stressed about the next mornings chores. we watched kabluey, and had so many laughs (quietly muffled under the palms of our hands of course). this is a momentous day in so many ways.

more on that later...

my baby did it!

yesterday was such a great day. i saw maya crawling on her own for the first time ever. she took a few "steps" and then stopped. it's not a full out crawl yet but she is moving forward for sure. the fact that she is moving her arms forward and then her legs is such a big deal. it's something that has taken a while to get.

this last week she has really grown up so much. it's amazing that so many changes have occurred the week of her 1 year birthday. literally on her birthday she started telling me that she didn't want to sit in her high chair. she did this by arching her back when i would try and sit her in it. normally i would hate such things but for some reason it doesn't bother me as much. it's almost like i'm glad that she is starting to express herself.

yesterday while watching her i couldn't help but jump up and down. i felt so happy. my little baby is growing up. she is starting to wave bye bye, more and all done. she is learning her first language now. it is a wonder to see it happen in front of my eyes.

i want to write all these little milestones down so i won't ever forget the hard work maya has put into making them happen. i hope that one day she can be an example to others. i hope that she can be an inspiration just like adults with down syndrome that i see that have accomplished so much.

Maya's newsletter: 1 year

today i am so happy to announce that maya is 1! can you believe that it has been one year?! well i certainly can't. it really doesn't feel like a whole 12 months has passed.

i have so much to report to you about miss maya. this last month it seems like she is getting rid of all her baby fat and is stretching out. luckily her appetite has caught up and she is very much enjoying eating her fill of veggies (as long as there is some kind of fruit in the mix). her latest crazy is yogurt and ice cold formula.

just this week we discovered that maya can stand at the couch and play (with a little help from mama). she doesn't last a very long time but each day that passes i see that she is gaining more tolerance for standing. her sitting skills have also improved. she loves to sit and play on her own. she is so over laying on her back unless she's very tired. =)

just this week i've noticed that maya loves to mimic everything we do. from itsy bitsy spider to coughing if we cough. everyday we try our best to use sign language when we are feeding or playing and i see that it is finally paying off. she is copying our hand gestures now and i think that she is on the verge of starting to sign "more" and "all done" on her own.

last week we had a new speech therapist do a feeding evaluation on maya. this therapist specializes in oral motor development. during the evaluation maya, with minimal prompting, used a straw to drink from a container. now everyday i use her special "honey bear" straw and cup at meal times to help her develop tongue retraction and muscle tone. with these new techniques and exercises we hope that maya will become more aware of her mouth and in turn improve her speech.

as you all know we have recently been told by the state that maya's benefits through arizona early intervention will be discontinued. wednesday there was news that a judge blocked DES from cutting these services. it is still unknown at this point when the services will be reinstated but we hope that this ruling will stick and maya will again receive her help from the state.

i wish to thank all of you for the interest and love you have shown our darling maya. with all of your support we have had a wonderful year. from the moment maya was brought into this world our lives have never been the same. it's been such an amazing journey on many levels. i can honestly say that i would never change a thing about it.

Arizona DDD cuts are official

Well we finally received a letter yesterday from Department of Economic Security.   The letter states that due to a 150 million dollar shortfall all of Maya's services will be discontinued. Ironically this will take in effect on March 13, 2009 (Maya's birthday).

At this point our only hope is to have Maya qualify for Arizona Long Term Care System (ALTCS). We have already started the process. However many times it is very difficult to quality until the age of 3. We also will send a letter and voice our disagreement to DDD (Division of Developmental Disabilities) for an administrative review. I have heard we have a right to dispute this letter based on the Individuals with Disabilities Education Act (IDEA). According to Federal IDEA policy, services can only be stopped if the parents choose to withdraw their consent to participate or the child no longer needs services. I hope this is the case and our services will be restored.

Thank you all for sending us your thoughts and prayers and personally writing the Governor and local representatives. We cannot give up the fight and must continue to voice our concerns. My fear is that once they have done away with this program they will not bring it back. It is so sad that they will let our children suffer like this.

Below is a blog with the latest news and info on this subject.  I have found it very helpful.
http://takeactioninaz.blogspot.com/

budget cuts effecting maya

I received horrible news this last week about Maya's early intervention program. I was told that AZ plans to eliminate all services provided through DDD (Division of Developmental Disabilities). This means that Maya will no longer receive any therapy through the state. They are basically eliminating all services for 0-3 year old children who are at risk of developmental delays. I haven't received official word in writing but so far Maya's coordinator though DDD has confirmed this information.

Everyone I speak to is outraged because studies have proven that early intervention is essential in helping children with developmental delays. The first 3 years is a crucial time for the development of gross, speech and fine motor skills. Even though Maya is still below the typical learning curve we have seen great strides made because of the ongoing therapy she has received. Now we all will be forced to pay out of pocket since most insurances are limited in covering these therapies. Worse yet, many families may not be able to afford these therapies for their children.

I'm sending the word out and asking if you can take the time to write the Governor and voice your concerns on this issue. I was also told to write our legislators. Whether it's a quick email or a formal letter our voice must be heard.

Jan Brewer, Governor
http://azgovernor.gov/Contact.asp

http://azleg.gov/MemberRoster.asp?Body=H&SortBy=1

Below are some links describing the budget cuts:
https://egov.azdes.gov/cmsinternet/default.aspx?id=3460&menu=12\

https://egov.azdes.gov/cmsinternet/uploadedFiles/Office_of_Communications/FISCAL_YEAR_2009_BUDGET_REDUCTIONSl.pdf


a friend of mine also mentioned the two below organizations that are hopefully going to lead the fight in this battle.

The Childrens Action Alliance (CAA) is a major player at the Capitol, and they have a page where they're asking parents to share their stories to compile for the legislature.

The Protecting Arizona's Families Coalition (PAFCO) They're posting weekly website updates on the actions they're organizing.

sitting up from hands and knees

it was only two days after the physical therapist was showing maya how to sit up on her own when she surprised the heck out of me and did it in her crib. i had just put her down on her belly and within a minute i turned to find my daughter sitting up. she seemed as surprised as i did. that same day, she sat up on her own on the floor. and then again the next day. all these times i didn't see the actual transition so i don't know how she did it, only that she did.

that was last week. now this week it seems she hasn't been able to master the same skill. the therapist said that, that happens sometimes but that she will get it again. only minutes after the pt left she was on the floor on her own. i heard a thud and found that she was on her back. after a second she let our a loud wail. i felt so bad for her. i'm sure she had tried to sit up like she was learning with her pt, but failed. oh the pain in my heart. i can't believe i'm such a softy! it only took seconds to calm her down but i just felt so sorry for her. i wish she didn't have to struggle so much. i wish she was already crawling like i see other kids younger than her do. for the first time in a long time i started to see that my daughter has down syndrome. i knew it would happen, the statistics say that she will be behind on her milestones but now i am certainly seeing them loud and clear. before it didn't seem so drastic. but now people are starting to ask, is she walking?...is she using the furniture to stand up? i have to tell them no. not yet.

well i never finished this entry. i'm not sure why i never posted it. so another week has gone by and i'm discovering that my little girl never gives up. she has decided that she will sit up again even if it's on her own terms. today her father was playing with her on the floor and he was so excited to tell me that she sat up twice. so there you have it. sometimes it works and sometimes it doesn't. it seems ok to me...as long as she just keeps trying. and from what i can see my little girl doesn't stop trying.

speech article from down syndrome online

i found this site while looking for articles on how learning a foreign language might effect a person with down syndrome.

Speech, language and communication for individuals with Down Syndrome - An overview

this site has tons of information including articles and mailing lists. it seems like a wonderful resource.