Our real baby, baby is 2!!!!!

Nixer's birthday........




Easter.........




Tiring end to a loooooooong week. While Saf didn't have school this week, it was still a busy one.

We had a follow-up visit with the dietitian at Regional Center. Saf did really well, Nix went into a meltdown at about the 45 minute mark. Saf was able to ignore Nixi's screaming for about a half an hour more and then they both started to go. So, we promptly got the heck outta dodge. The dietitian had some good suggestions for introducing probiotics to Saf's system as a means of regulating her bowels for the long term. We're still doing the daily Miralax and its working, but if possible it would be great for her body to do what it needs to do naturally.

We had a visit from Nixi's OT (occupational therapist) that was totally underwhelming. If you can recall, well over a month ago she said she was going to put together a "sensory diet" for Nix that would include balancing carbs and protein every two hours with sensory activities in between snacks. What'd we get....a crappy list of snack foods that mix protein and carbs, no sensory activities, and no schedule. Really? Its ridiculous. Needless to say, we're totally disappointed and frustrated with the lack of "action" and initiative we're seeing.

The rest of the week was a rotation of Burger King play area and hanging out in the front yard in the bouncer house.

Nixi's birthday was wonderful. We learned from Saf's birthday that we needed more visual supports throughout the day, so we added things to the visual schedule like when gifts would be given and how many. It worked like a charm and it was a blissfully meltdown-free day...and Nixi had a wonderful time! Thank you to all of our family for the wonderful gifts, $$, and love. Really helped to make it an amazing day for both girls. Easter was a little dicey...but we expected that with it being the day after the birthday hoopla. None the less, another fun and wonderful....despite the meltdowns. Make sure to check out the video!

This week I want to touch on something that is currently proving to be a tough one for Mike and I....level of functioning. Kiddos with Classic Autism (and all spectrum disorders) vary so greatly, so one of the specifiers within the diagnosis addresses level of adaptive functioning. Those level of functioning are high, moderate, and low. Lately we've been getting a lot of comments from people like, "So Nixi is the higher functioning one, right?" Its a benign comment asked solely for informational purposes, but its like a little dagger to the heart. If we say yes, then what does that make Saf?

Professionals that have worked with Saf have always said that she was unique and that she is unlike any other children they have worked with. While she clearly is confused about social interactions and nuances, she craves them. She is attuned to others emotions almost on an empath level. You cry, she cries and tells you "all done sad." She has always exhibited acute performance anxiety, which infers a deeper social understanding. She gets it that if she can't do something or fails when trying that others will see that and she is horribly self-conscious. She is self-conscious! That means that she has a complex understanding of herself in relations to others. From that perspective I think she's exceptionally high functioning in the Autism world. Unfortunately, due to those very qualities as well as her verbal apraxia and motor dyspraxia, her adaptive functioning out in the world is moderate. If she trips she immediately scans the room to see who has seen her. If someone asks her if she's ok, they've confirmed that they saw her and she begins to scream and cry out of embarrassment. When Mike and I are laughing at a joke between the two of us she cried and screams and says, "all done silly" because she doesn't know why we're laughing. To make it ok we have to stop laughing and she has to fake laugh so that she feels like she's part of the joke and not the joke itself. Because she is anxious all of the time, she must employ a number of rituals to help her feel as though she has some control over her environment. These rituals often prevent us from leaving the house on time, prevent her from functionally playing with other kids, and absolutely torment her.

Nixi is exceptionally bright, her speech is articulate/intelligible and her vocabulary is expansive. She walks right up to you and says, "Hi, how are you?"...then she turns her little self around and walks away. She has no clue that she needs to wait for a response, nor does she care much if you give one. If you ask her how she is, your talking to the back of her darling little noggin. At this point Nixi can walk right into a room full of people and, as long as there are things to touch and explore, she never looks back. There's no scanning the room for friendly or scary or familiar faces. She doesn't care who's there, she's not there to see people...she's there to see things. She'll bring you toys by the armful, only to walk away just as abruptly when she's done with you...weather your mid-sentence or not. When I cry she laughs, sometimes patting my face with her hands to play with my tears. If you ask her questions that are out of her "schtick", she looks at you blankly and/or walks away. I could go on, but you get the idea. In the Autism world, she's pretty typical "autistic"....she's like the other kids that people like our BIA, Heather, works with. From an adaptive functioning standpoint...she's able to communicate her basic needs (although, unless its a highly motivating desire...she's generally not spontaneous with routine requests, we have to prompt her repeatedly and often the answer is a repeat of what we're just said...echolalia), she isn't motor dyspraxic so she is capable of doing things like brushing her hair and getting dressed (of which she does neither because they aren't highly motivating tasks), etc. From that perspective....sure, she's higher functioning. Its the social areas where she's lower functioning than Saf. If she isnt able to be empathic to other's feelings and needs, who will be her friend? If she can't retain her focus because something across the room looks more interesting, how will she apply that amazing intellect that we know she has.

I've said it before, and I'll say it again....Saf has the motivation but lacks the ability and Nixi has the ability and lacks the motivation. I'm not sure what get you farther in this world....intelligible speech and an amazing vocabulary or a really great smile from someone who is genuinely thrilled to see you? Both of my girls have a number of challenges now and in the future. They both have areas in which they are high functioning and lower functioning. So, while its a benign questions, its a very complex question with no definitive answer...and who the hell cares, anyways. They are who they are, they are where they are, and they will grow and change every day!

With that, enjoy the video and...............adios! I'm outta here, I spell checked but that's the extent of it so pardon any other errors and remember to check in next week for our last "parent post" before turning the blog back over to the girls.

Sarah

Nix's birthday montage...we kept it very low key in anticipation of Easter being the next day......


Easter: Part I..BASKETS


Easter: Part II..THE HUNT!

What a long, strange trip this is.....................

What a fun week for the girls.

Saf dyed Easter eggs and had an egg hunt at school. Teacher Jenn said she was a little bothered by the egg hunt throwing off the regular class routine, but once she got the hang of the whole thing...it was A-W-E-S-O-M-E!!!! She ran out into the grass and grabbed up eggs like a champ. She was so excited to check out her booty when she got home. Even more fun....she hadn't realized that the plastic eggs had treats in them. When I helped her open the first egg she was like, "Ohhhhh, so that's why some of the other kids treated the whole deal like a sport!"..."There candy and toys in them there eggs!". She had a great time looking in all of the eggs and did a wonderful job of sharing the experience with Nixi.

Nix had a pretty exciting week. Tuesday she got a visit from her Early Intervention (E.I.) teacher. Wednesday she went to the E.I. toddlers group for the first time. She had a blast! She buzzed around the room like she owned the place. So many toys and neat things to see. She never looked back to see where I was or to check in... kind of neat, until I realized she really wasn't looking for me at all. Typically developing toddlers will explore their environment, but with frequent glances or physical check-in's with their caregiver....many kids on the spectrum will not. Regardless, she was having a blast. She did part of circle time, sang, shook some maracas, and waved some pom poms. She loved it and we can't wait to go back again. Thursday she saw her Occupational Therapist and E.I. case worker...always a lot of fun.

Busy week for both girls. With the weather improving we got in some wading pool time and a few days playing in the Burger King kid's area. That's massive progress. We tried a to play in one of those structures about 6 months ago and it ended horribly. Saf panicked when other kids got into the structure and I had to scale to the top and get her down. This week she requested to go to Burger King to "play with friends". Each time we went there were anywhere from 2 to 5 other kids and she did great. Nixi focused more on eating, but she played a little in the structure and only yelled at approaching kids a few times. This brings me to the topic I wanted to touch on for this week....progress.

There is a myth out there that if a child with autism makes progress they must have never really had autism in the first place. When thinking about this myth, all one has to do is think of Temple Grandin (arguably the most "famous" living person with autism). Temple was completely non-verbal until the age of 5. She is now a doctored college professor and sought after livestock consultant...as she completely changed the way beef cattle are processed, thereby changing the entire cattle industry. All one has to do is watch an interview with Temple to see that she still very much has autism. However, on paper, she looks not only typical but exceptional. A true example that autism is different for every person, and, given the right opportunities and support anything may be possible. This is an important topic to discuss not only because it can be inspirational, but also because it highlights some of the challenges that some folks with autism face once they do show progress.

Given the country's current financial state, funds for state run programs are dwindling. Programs like Regional Center and Early Intervention are becoming more and more stringent in their requirements for acceptance. Just in the 2 odd years that we've been involved with them, the level of qualifying delay in a child has been increased, thereby removing service and support from kids that need them but are less "severe". As well, school districts are notorious for creating IEP's (Individualized Education Plans)to help students with disabilities and then discontinuing their supports once they make consistent progress. Predictably, studies have shown that once supports and services are removed many of these children not only return to their previous level of functioning, but some end up functioning at a lower level due to the stress and trauma of losing their supports. Regional Center does a psychological evaluation when their clients turn 3 to see if they will continue to qualify for services. It is not uncommon for kids with autism to be disqualified and diagnosed as not autistic simply because they have worked hard and made progress in the 1 to 2 years that they were in early intervention. There is this assumption that people with autism mature in a bubble and, while some slight changes may be expected, overall they essentially stagnate over a lifetime. This is bizarre, and totally untrue. Anyone, regardless of limitation, level of disability, etc. changes and progresses through life experiences and time. These changes and progressions may not be able to be rated on a scale like that of a child who grows up and becomes a doctor...but they are there, one just has to look for them. The absolute tragedy is when programs view progress as meaning a lack of need for services. Its like giving some with a broken leg crutches to walk and then taking them away a week later because they did so well the past week walking. That would make no sense, clearly the ability to walk is directly associated with the assistance of the crutches. Take away the crutches, take away the mobility. Why is is it any less ludicrous when people take away supports for kids with special needs. Take away the crutches and they will fall.

A child with autism will always have autism. It is a lifelong pervasive developmental disorder. There will be areas of progression, and there will always be areas of weakness. 80% of adults on the spectrum live with family members or in assisted living. However, there are vast numbers within that 80% who also have jobs, friendships, hobbies, etc. What it all comes down to is support. While people on the spectrum may require more intense levels of support than others, with those supports they can and do thrive.

So, I guess my purpose of this slightly disjointed rant (I'm tired...REALLY TIRED) is twofold. One, I wanted to highlight the shortcomings of the state services that we are forced to use as our lifeline simply because there is nothing else out there being offered. Two, I wanted to help you understand that my kids and kids like them will progress and change and grow up. Saf may scream and throw herself on the ground when she is confused forever, or she may not. She may do "happy feet" when she's 80...or she may not, maybe she'll just smile and laugh. Nixi may never sleep through a whole night, or maybe she will. She may never delight in the company of others, or maybe someday she'll delight at being in a room full of people that share a particular interest of hers. We don't know. The only thing we do know for sure is that our children will grow and change through all of their life experiences. While that may not look like typical maturation, don't for one second think they don't take in the world and learn from it.....just because they aren't looking at you doesn't mean they aren't looking.

With that...I'm outta here. Make sure to check out the videos below, some fun stuff and some very real stuff...all good stuff. Check back in next week for some great video that I was too tired to load tonight and to see how the girls' Easter, and Nixi's birthday, was. Hell, who knows, maybe I'll have some zzz's under my belt and I'll be a little more coherent.

Sarah

A little montage from Burger King............


It isn't pretty, but last year we decided that we wanted to include some "a day in our real life" video during the month of April....as we usually like keep to the videos light and fun on the blog otherwise. So, in keeping with awareness month we're including the following video. It shows a portion of one of Nixi's meltdowns. This particular meltdown was proceeding a transition...something Nixi, and most kids on the spectrum, struggle with. We were getting ready to leave the house. The clip is from the middle of the meltdown, which lasted roughly 40 minutes with intensity just as you will be seeing it from beginning to end. Nixi has between 6-8 of these daily, each averaging between 20-40 minutes...some a little shorter, some longer.


This is a short video that I found on a day where I just wanted to give up, run away, and cease to be. I could relate to every parent and every feeling in it, and I knew I wasn't alone...we weren't alone, and sometimes that's all you need to know.

Our baby is 4!

Its so hard to believe that our babies wont stay babies forever. On Saturday Saf tuned 4. Unbelievable. Seems like just yesterday we were in the hospital holding her in our arms and dreaming of what was to come. Those 3 days we spent in the hospital after Saf's birth are some of our most cherished memories. Not a care in the world...just unparalleled joy. The birthday celebration at school went off without a hitch and Saf really enjoyed it. Her actual birthday was a lot of fun. She wanted to stay at home and play with all of her presents. We played pin the tail on the donkey, bounced in the bounce house, had our usual Saturday pizza dinner, and cupcakes. By the evening they were both pretty overstimulated, so a few meltdowns here and there. All in all, a great birthday celebration!

Birthdays are bitter-sweet. Its amazing to watch Saf grow into this amazing little human being...but its also scary. Scary because, as Saf grows older, a number of her challenges become more and more obvious to her peers and the public in general. She is still in diapers, and sometimes she smells like poop. When she does something small like bumping her head or tripping she throws herself to the ground screaming and crying. When she tries to do something like climb a rock wall that toddlers are climbing and she can't she screams and cries at the top of her lungs. When she gets excited she opens her mouth, does happy feet, and moves her hands and fingers in an odd fashion (check out her birthday video with her Mickey toy). These are just a few examples of things that are forgiven and looked over in a younger child. As Saf ages we are noticing more and more that people are "noticing" her more and more. She is such a sensitive little girl..she wants to be with people, she wants to have friends. If the distance that these challenges cause didn't bother her, they wouldn't bother us. We're so beyond caring when people stare...ok, so it still hurts, but only because we hurt for her. The problem is, she does care. She may not know why there is this distance, but she knows its there and it hurts her deeply. So, we have to make a priority list of things to hit really hard over the next year or so to make some of those challenges less obvious. As if the challenge of just socializing weren't enough. We have to remember we're on Saf time...all things will come when they're supposed to. Its just so hard to see these differences becoming more and more apparent.

Nixi had an interesting week. Still not wanting to go anywhere, but tolerating the fact that we have to. She's sleeping better with the weighted blanket, but still wakes a few times during the night and is up for good by 4am or 5am. I was talking to a mom of a kiddo in Saf's class, also on the spectrum, about Nix. I was trying to describe the girls' differences to no avail...and then it hit me. In a nutshell, Saf has the motivation but lacks the ability and Nixi has the ability but lacks the motivation. We don't really know what motivates Nixi. If you asked me what her favorite things are the only I could tell you is Dora. I couldn't tell you her favorite toy, food, song, activity, etc. When she wants to watch TV she wants to watch Dora, that's all I know. I know Saf wants to do what other kids can do, wants to play with others, wants to do what Mike and I can do, etc. That just isnt the case with Nixi. I talked with the BIA, Heather, and we're hoping that over the summer we can start to figure out what motivates her. Heather pointed out, there may only be a few things that end up motivating her, but then we'll work of expanding those areas. Its crazy to not know what your kid is "in to". Wild.

So, this week Saf will be dying Easter eggs and having an Easter egg hunt at school. This will be her first ever. Pretty exciting stuff. This is her last week, then she's off for a week of spring break. Teacher Jenn will be prepping the kids for the break, and we'll have it marked on the calender...but its still going to be a total bummer for Saf. Nixi's early intervention team will be on break, too...so a total break of our routine. Always a rough thing. I'm going to have to really plan out the week well if we're going to avoid daily meltdowns. I'm up for the challenge!

I want to take a minute to thank everyone for the calls, cards, and gifts for Saf's b-day. It always means so much to us to know how very much Saf is loved.

So, for now, that's it. Its late...it takes me at least an hour and a half to write the blog and download pictures and video...so forgive any typos. Mike and I only have 3 hours of downtime a day after the girls go to bed....so I'm gonna go get me some downtime!

Have a great week and make sure to check back next week!

Sarah

Saf's school celebration.........


Family b-day fun.......

Happy Autism Awareness Month!

It wasn't easy, but we cracked the girls' password and hijacked the blog again. Ok, it was totally easy...all we had to do was give Nixi a juice pouch and she sang like a bird!

So, here we are...the parents. We'll be doing the blog for the remainder of Autism Awareness month. You all get weekly insight into the girls and their daily lives...now we get to share our thoughts on life and the bigger picture. If the posts this month seem rough, emotional, raw, depressing, or angry...that's probably because they are. As parents of two kids on the spectrum, life for us is often all of the above and then some, all so it doesn't have to be for our girls. The job of meeting all of their unique needs while simultaneously insulating them from their perceived "threats" and still exposing them to life, the world, and the joys of being a kid is tough...really tough. Its a 24-7 job, there are no days off and no extra pay for overtime. Its all overtime. Being an "autism parent" is very much a job, at times a joy, and always interesting. So, welcome to our world!

This week was a pretty good week. Like most, packed with lots of lows and some amazing highs. That's one of the rough things, the highs and lows. Kiddos on the spectrum, and ours are no exception, can go from absolute joy and delight to abject terror and panic in a matter of seconds. Typically it has something to do with a change in sensory input (landscaper with leaf blower at the park), a break in a routine (swinging only on a particular swing at the park, and someone is on it), or confusion (kids running by screaming at the park, friend or foe?). The girls recover from these high and lows much quicker than we do. That's the hard part, there's no time for us to digest the situation...when the girls are "back" and ready to rock we need to be too. Its a roller coaster that never ends. The highs are so amazing, I mean REALLY amazing and the lows knock the wind out of you.

Saf had some great days at school. She is starting to comment on what she does at school. This is a new thing and it's totally amazing. With a great deal of coaxing and some guiding the conversation she'll say who she played with and what they did. It goes something like this; "Saf, did you have a great day at school today?"--silence--"What did you do?"--silence--"Did you play with Carson?"--"Carson...Diego...yellow"--"Who else did you play with?"--"Alex...bottle"--"Oh, you played dolls and they drank from a bottle?"--"Brandon...trains"--"Oh, Brandon played with the trains?" End conversation. May not seem all that elaborate, but its huge. Saf is spontaneously recalling and sharing things from her day, and we've been waiting for that for a long time. Pretty amazing.

Nixi's Early Intervention case manager came by to work on her levels. This coming week she and Saf are due for their Regional Center updates where we go over their services, review progress, and discuss areas that still need to be addressed. So, Nixi got to watch Dora and that was ok with her! Poor Nix has been going through some changes lately. I think the girls have touched on them a little, so pardon any overlap. Having Nixi formally diagnosed with autism has given us "permission" to acknowledge that there are a number of her behaviors that are "autistic". Seems it has also given her "permission" to come into her own within the diagnosis. She has ramped up the echolalia (repeating words after you say them), has developed what we like to call deafness by obsession (so focused that she rarely hears us anymore), and transitions from the most basic activity to the next are earth shattering. She doesn't want to leave our home base. The house and the front yard are ok, everywhere else is not. She fights and screams with huge tears streaming down her face when we have to pick up Saf from school (used to be the most favorite part of the day), go to the park, store, most anywhere. She isn't a very visual kid, so Saf's visual schedule doesn't hold a lot of value for her in terms of giving her mental prep time before transitions. We'll have to find a way to combine it with something auditory to make it better for her. How we do that, we don't yet know.

We had an amazing outing to the pet store and park with friends who have 2 boys and 1 little girl, all on the spectrum. Their eldest, about 10, had a blast leading the girls around the pet store and pushing them in the swings at the park. Nixi told me, "No, mommy...boy...want boy please" when I tried to push her so Saf could have a turn with Sebastian. Later, Nixi leaned over Sebastian and planted a huge kiss on him. Apparently Nixi is into older men! It was the most fun they have ever had on a playdate, and the first time they have actually played with their play-dates...the kids wanted to play with them, and they wanted to play with the kids. They absolutely know when they are in the presence of other kids like them and they are visibly at ease and joyful. There doesn't seem to be that apprehension and anxiety that we see when they are around neurotypical kids. Its really cool. Downside, that night and the next day we paid for it with the girls being overstimulated and just emotional messes. We always pay for it in the end, but it was worth it and the girls got back on track.

April is a month of birthdays for us. Mike's birthday is the 4th. He got an early b-day gift of an evening at the sushi bar with me. Our first real date, just the two of us, in 4 years. It was awesome! The girls got an early birthday gift of a huge clubhouse bounce house. They are loving it! Check out the video! Not only is it cool looking and super fun, but its therapeutic. Running on the air filled surface gives amazing sensory input to the joints and muscles. Running and crashing into it gives deep pressure input(you'll notice Saf do that a lot in the video). The thing, as a whole, increases body spatial awareness...something both of the girls lack. Can you tell we put a lot of thought and research into the gift? A great example that there really isn't any area of our parenting experience that isn't touched by autism, sensory processing disorder, and special needs. Like I said, its a 24-7 gig.

So, I've dragged on enough for this week. Hope you check back in next week!

Sarah & Mike