Day #166

 

In the first photograph Maeve looks rather anguished doesn't she?! All I asked her to do was sign "mama" and this was her response. It is kind of a "fine I'll do it, just stop asking!" sort of moment for her. I wasn't even going to try to correct her hand positioning, I was just glad she attempted.

The second photograph I call: "Never too young for chores", featuring Josie using the carpet sweeper in the living room. She enjoyed it and I had already done most of the dirty work but when the girlie asks to sweep who am I to deny her?! :D

The biting issue was a bit better today, the overall mood was not as tense, but Josie still would let out with long, loud screams when she didn't want to work or something wasn't to her liking. Passing phase, passing phase, pass on by!

Day #165

 

I decided to start tracking Josie's behavior on an ABC (antecedent, behavior, consequence) Data Sheet because the trend for the past 24 hours has been very toothy. She has bitten Maeve twice, grabbed and pinched my arm numerous times and just today she began biting herself. I cannot for the life of me pinpoint an antecedent, if I had to generalize I would say for the most part it could be linked to denial of a wanted item or activity but that doesn't cover all of it. There have been times where she will just let out with a scream and go for the nearest available target completely out of the blue. Times when she will be sitting there happy as a clam then just come unglued. I don't know if I am handling it the greatest either by ignoring the behavior or redirecting it. I tried a time out in her room once but she HATES being confined so that made it worse. I keep blaming myself because these behaviors started after I was away so long on Saturday, I don't know. All I know is that both girls have been high-strung lately and I am hoping with all of my being that this is a short lived phase!

Day #164

Today was a fairly easy and uneventful type of day. After going to the shop we came home and were quite lazy for the rest of the afternoon. Although Josie did seem a bit tense, easily set off, quick to get angry and pinch. I can't pinpoint an antecedent but her outbursts seemed to get Maeve going which made Josie louder and there for a few minutes it was like wild kingdom in this apartment. I put on some soothing music and Josie ended up nodding off next to me. She only took about a 15 minute power nap but it seemed to improve her demeanor a bit, not completely. Some days are definitely more unpredictable then others!

Day #163

 I went out to Columbia College today for assessment testing, orientation and advisement. I was gone 6 1/2 hours! Thank you Sierra for being there for the girls, I appreciate everything! I did not expect to be gone so long but it was a hurry up and wait type situation. The assessment test only took me 41 minutes, boy am I rusty at academics! About three hours into this adventure I nearly had a panic attack and was feeling like such a horrible mommy for going off and abandoning my girls for so long! How can I justify going back to school if I am going to be away from them so much! I met two angels at about this time who happened to work for Tuolumne County Behavioral Health, we got to talking and they looked at each other and said "let's have a counseling session." They began asking "So how are you?" "Really, how are you? What do you do for you?" "Do you have help for the girls?" Then proceeded to tell me to take care of myself so that I can take care of the girls and to not stress myself out by taking on a large class load at this time and to ease into college. I am very grateful that they were there at the right time! Next is a counseling appointment on Monday and then I will make decisions on where I am going from here. I know I wouldn't be "abandoning" the girls but that knowledge doesn't make the tightness in the pit of my stomach any better. I am home now and had a love fest with my girlies and feel much better about the world :D

Day #162

Tonight we had our first parent's support group meeting which went really well and I am so happy how it all turned out! For the first ever meeting we had 3 more attendees then I expected and hopefully it will only flourish from there. A lot of talk both supportive and informative that chattered on into the night. First were introductions that were supposed to be about ourselves but as usual we went right to the kiddos and their diagnoses because if any special needs parent faces the reality of the situation: we are our children! The rest of the meeting was free flow conversation with an easy back and forth of questions and answers. Thank you to all who attended and I hope to see you at the next meeting! :D

Day #161

Painting with water is a fun way to cool off and build much needed arm strength. It also get the girlies to cross their mid line which gets both sides of the brain talking to each other and improves overall coordination. Here Josie is painting her rainbow on the deck storage door, she also painted anywhere she could reach, even her sister! Maeve was more into trying to pluck the bristles off the paint brush and dump the water out but we'll continue trying.

Day #160

 I had to put three pictures up today just to show you what a goober Josie was being during session! She enjoyed herself immensely but the amount of work accomplished was not as productive as it should have been. The first picture she was enjoying her snack so much she wanted to show it off. I don't know if she did it on purpose or I just has perfect timing but I love the twinkle in her eyes! The second picture she needed a bit of a giggle break so rested her head on my leg while trying to put off having to answer "what letter is this?" for as long as possible, although when she decided on her own time to answer she was correct as usual. The last picture she was not cooperating very well with Shelley when it was time to do "Head, Shoulders, Knees and Toes". Trying to engage her was a challenge she either was concentrating too much on her re-enforcer, re-enacting cartoons or answering before she actually looked at the item being asked about. She did all this with a smile though :D

Day #159

 We took the girls swimming for the first time ever this morning and they LOVED it! It felt so good to be in the water! Josie was more comfortable then Maeve, she even struck out on her own a time or two in the floaty, kicking like a pro! Maeve liked the water but was more comfortable being held when off the pool steps. As soon as we were in the car ready to leave Josie said "That was cool!" Thank you Shelley and be sure to thank your daughter for us as well! I have to admit I was a little apprehensive but it turned out to be a fantastic experience :D

Day #158

Thank you Shelley for taking this picture! I am usually the one behind the camera and it is a treat to be in a picture with both my girls :) Isn't it such a classic photo too?! We are all looking at the magazine, even the cat! Love it!

I finally got a call back from Sutter Genetics Clinic about setting up appointments for Maeve. We have a genetics counselor appointment in August, where we will get all the results explained to us. Then we have an appointment with the geneticist himself in November, most likely to determine treatment. At least it is NOT an emergency which makes me feel better. Now to figure out transportation...

Day #157

Anything becomes an art medium for Josie, including her yogurt! I also have to watch her very closely with the markers lately because she saw a hopscotch drawn in chalk on the sidewalk and thinks markers or sharpies are the same thing when drawn on the linoleum.

Thank you Emily, I had fun and appreciate you getting me out of the house today and away from...I hate to call him my "ex" because that still gives him power over me...so we will just say Maeve and Josie's father, even though I knew he would let them thrash the house and without fail he did. It frustrates me to no end the fact that I have to remind him to visit his daughters and when he does he barely interacts with them and wants to be treated like a guest. Sometimes I think it would be easier on all of us if he just stayed away.

Anyways, to sum the day up: easy start, frustration, good friend, good conversation, chai latte, browsing, owl mug, groceries, home, frustration leaving out the door, cleaning and cupcakes :D

Day #156

 

Story time! The girls really do look like twins here don't they?! I get asked all the time whether they are twins or not and I always say they are "Irish twins", being only 14 months apart I would say they are close enough. I love how they are both capable now of entertaining themselves, either with toys or picking up books as they have done here. For the most part they still require my undivided attention but those times in between are starting to lengthen a bit.

Breaking news: Josie just walked up to me saying "come on kids it's getting dark" turned toward the doll house then upon turning back to me said "I'm a bunny rabbit hop hop hop" and now she is laying on the floor playing in the bottom story of the doll house singing the "Wonder Pets" theme song.

Well, it is HOT outside and we are having a very lazy day about the house, we will all probably have a second wind when it starts to cool off tonight but for now I am thinking a nap sounds marvelous! (Not a chance but one can dream :D )

Day #155

Day #2 of filming with Reed, Josie is so enamored with the camera, I bet he has quite a few little fingerprints and even a nose print or two to wipe clean. Filming commenced while I was at an ophthalmology appointment and continued for a while after I returned home. Jo is becoming quite the little actress and Maeve doesn't really seem fazed by any of it. It will be really fun to see how this project progresses.

We did get a couple new words out of Maeve today, YAY! It is so exciting to hear actual words come out of her. Approximations are fantastic too because that means she is trying to communicate but when you get her to say words that anyone can understand and mama doesn't have to translate it is really something to get stoked about. She is also getting more comfortable with signs as well and uses "more" quite frequently and will try her hand, no pun intended, at "please" and "milk" also.

Weird thing about my ophthalmology appointment was when I asked the doctor about the headaches I have been having and if it is due to not wearing my glasses he said "glasses don't give headaches" and checked my optical nerve a second time saying "your nerve is full, not swollen but full and if the headaches continue see a neurologist." Really, what does that mean? Nothing is wrong, they are just headaches and I refuse to have anything go wrong, anyways I should have my new glasses in about a week or so.

Day #154

This is what happens to a roll of toilet tissue when put into a bubble bath, thank you for finding out for me Maeve :D

Sometimes when I think about my daughters and what they go through on a daily basis my thoughts can only seem to form poetry because that is what they are to me...beautiful poetry!

Through my daughters eyes
I try so hard to see
What this world must be...
I see a world
that is peaceful
that is chaotic
that is creative
that is hypnotic
I see a world
which judges
which listens
which is dull
which also glistens
I see a world
of  family
of friends
of teachers
of critics
I see a world
that is too big
that is too small
that is too short
that is too tall
What this world must be
to my daughters
I can only TRY to see
But I have an idea
It is a world of extremes
Challenges
Fears
Hopes
and DREAMS!

Day #153

Josie decided Mama needed her face washed so grabbed a baby wipe, several actually, and nearly rubbed me raw!

Today was a bit odd for everyone, it was day one of a new student film project for us, and I apologize Reed if we were a bit stiff but as time goes on we will loosen up, we will all get used to being filmed and you will be able to get some good footage of the girls, I promise. Also, if you give us a list of all the questions you would like answers to, or guidance in some fashion you won't get puzzled looks or quite so many "um" responses. I like your go-with-the-flow attitude and think this will be a fun project for all.

It was funny to see how the girls acted so differently with the camera around. Josie kept striking dance poses and getting her to work during session was a bit tricky. When we went on a walk Maeve was the most perfect little lady, walking around the cemetery without a hitch. Polar opposites and quite comical!

Oh and I got a call back from our pediatrician, she got Maeve's blood and MRI results to read from our neurologist and genetically Maeve shows Miller-Dieker Syndrome but the MRI shows a normal brain with NO abnormalities due to the syndrome. She has been referred to the geneticist who is also a metabolic specialist because it could be due to a metabolic disorder (the way her body breaks down proteins) So as of now we have no definitive answers and she is "a challenge to diagnose" as our wonderful pediatrician put it but it is still good news to me since her brain is "normal" :D I am a happy Mama right now!

Day #152

I AM SO HAPPY! Look at how we are blocking off the counter and stove area so the girls cannot climb through anymore! An ingenious solution to use a picket fence, quite fitting with our non-conformity and it turned out better then I could have imagined. Thank you Greg I really appreciate all your hard work!!! You have saved me headaches and hurt girls. I suppose only an autism mom can get giddy over this but I am so stoked!

Day #151

"MY glasses" Isn't Josie the cutest little glamour doll in Teacher Gigi's sunglasses?! I have been tracking Maeve's vocalizations this afternoon like I was supposed to but wouldn't you know as soon as I start tallying up her vocal/sign/pec requests for items she clams up and just looks at me or hand leads me to what she wants! I have tried every way I know how but she just isn't going for it, boo! Anyways, we had a lovely cool walk this evening and the girls had a visit from their daddy which always puts them in a good mood, now I am looking forward to bedtime :D

Day #150

I guess they didn't like their applesauce or maybe this is a new art form but I wasn't too pleased to find it all over the PECs book. I was able to get caught up on some household chores today then had an hour and a half mini vacation thanks to our lovely respite provider, thank you Sierra! I LOVE my girls but in order to take a deep breath of fresh air and get a haircut it makes much more sense to fly solo. Once home we had a nice afternoon reading books, drawing and taking a walk. All in all it was a great day, as is every day if you look at it the right way :D

Day #149

I feel very strongly about this topic so I started a petition aimed at Governor Brown to put cameras in ALL California special needs classrooms. Many special needs students are non-verbal and cannot tell anyone if they are being abused in their classrooms by teachers, aides or other students. By putting cameras in ALL special needs classrooms we can protect our children, put an end to school based abuse, and give a witness that can exonerate those that are falsely accused as well.

As you should know by now I have two daughters on the autism spectrum, one severe non-verbal and one mild/moderate whose speech is improving but she is still not capable of telling me how she is being treated. They will be entering a special education classroom in the fall and honestly I am scared to let that happen. There are so many horror stories out there about children being abused by the very hands of those who are supposed to be guiding, teaching and nurturing these fragile young minds, it is frightening.

We NEED cameras in these classrooms to be the ever watchful eyes for absent parents and the voices for those who cannot speak for themselves! You can find the petition to sign here: http://www.change.org/petitions/governor-of-california-put-cameras-in-all-california-special-needs-classrooms

Thank you all for your support!!!

Day #148

Here is a photograph of my deck, the one with the lattice. See how high it is? Maeve and Josie tend to toss things over the deck: toys, cups, books, whatever they feel like chucking over. Being a single mom I don't run around the building to pick these things up right away because I am not going to leave them alone while I do so. It irks me that lately someone has been beating me to whatever it is that is thrown over and putting it in the dumpster. I have no proof so cannot point fingers as to whom could be doing this but whoever it is needs to get a life! My apartment building is backed by dirt, a creek and no neighbors so someone is very anal to be upset by children's toys being on the ground behind my building to have to run over and pick them up just to throw them away. So far in the past three days alone I have had to pull out of the dumpster: my mop and four rubber ducks. Just today a sippy cup was thrown over and not kidding less then an hour later it was gone and I bet if I walk over to the dumpster I will find it in there. I feel like hanging a sign down there saying "Single mom of two autistic children asks that if you pick up the things they throw over don't throw it away put it in here so I don't have to pull it out of the dumpster, thank you and have a nice day", I would have it hanging over a bucket with a rope attached so I could just pull it up to my deck without having to run around the building. Seriously annoyed!

Day #147

YAY! They won't boil during session anymore! We received reasonable accommodation from AWI (the owners of the apartment complex where we live) to put in a window air conditioning unit since it is so extremely hot in the girls room during their ABA therapy sessions. Thank you for installing it Tim! I used cup hooks for the cord and Maeve already ripped down the bag you put up until we get a board cut to size but I am still happy how well it works, thank you again :D

Day #146

I had a bomb dropped on me this morning! Returned a call I received from our neurologist's office and was given some news I never expected to get. Maeve had blood drawn so they could do a chromosomal analysis a while back and they came up with a genetic abnormality. We have been referred to a geneticist because Maeve has Miller-Dieker Syndrome which is: a syndrome characterized by a pattern of abnormal brain development known as lissencephaly. Normally the exterior of the brain (cerebral cortex) is multi-layered with folds and grooves. People with lissencephaly have an abnormally smooth brain with fewer folds and grooves. These brain malformations cause severe intellectual disability, developmental delay, seizures, abnormal muscle stiffness (spasticity), weak muscle tone (hypotonia), and feeding difficulties. Seizures usually begin before six months of age, and some occur from birth. Typically, the smoother the surface of the brain is, the more severe the associated symptoms are.

Signs and Symptoms
Facial features:

• Small head
• Prominent forehead
• Hollowing of the temples
• Long philtrum (the area between the nose and the upper lip)
• Small upper lip
• Late tooth eruption
• Short nose
• Malpositioned or malformed ears

Other features:

• Lissencephaly (abnormally smooth surface of the brain)
• Epilepsy
• Mental and growth retardation
• Abnormalities in the brain, kidneys, heart, genitourinary system and gastrointestinal tract
• Hand and foot abnormalities
• Early hypotonia (decreased muscle tone), then subsequent hypertonia (increased muscle tone).

Right now this isn't sinking in yet, my mind is overloaded! The geneticist's office should be giving us a call to set up an appointment...what does this mean for her?

Day #145

HOT! HOT! HOT!!! Lots of water play this afternoon but even then it seemed too hot to be outside so we closed up and tried to stay cool indoors. Other then that it was a session day for us, speech as well, grocery shopping all while trying to stay hydrated and cool.

Day #144

We have made a little bit of progress with Josie concerning bath time, here she is at least tolerating being next to the tub while Maeve is in it. When I started running the tap she began whimpering, ran for her room and closed the door. I needed to bathe her though and she did alright with me giving her a quick shampoo and scrub down while standing in the water, it was maybe a 2 minute bath at most. When Maeve got into the tub Josie slowly got interested in what she was doing and brought a rubber duck into the bathroom which she played with next to the bath. Josie also like practicing brushing her hair and washing her hands while looking in the mirror. She spent most of Maeve's bath time in the bathroom as long as I didn't even hint about her getting into the tub. I tried that once and she bolted for the deck. Not sure why she doesn't want to be in the tub any longer but hopefully this is a short lived fear.

Day #143

Add another food to Maeve's repertoire: pizza! Yes, she is eating PIZZA! Never thought I would see the day when she would willingly eat anything but yogurt and protein bars. So excited! I may actually be able to  stop buying Gerber soon, woohoo!

Day #142

I need some help here, Josie is once again scared of bath time and this is how I found her hiding when I got out of the shower. Even the sound of the water running sends her off to a corner and trying to bathe her now is a quick one minute shampoo and rinse off because she is crying and shaking the whole time.  We were doing so great for so long and I do not know what changed. I am seriously thinking about doing the no rinse shampoo and sponge baths again because it breaks my heart to see that frightened look on her face, I just wish I knew the cause?!

Day #141

 THIS IS WHAT AUTISM LOOKS LIKE!

 You know what really makes me angry is the fact that since the R-Word campaign to end the derogatory use of the word "retard", which I fully support by the way, the new word of choice is AUTISTIC! This makes me insanely angry!

It first came to my notice when it was used in the movie 21 Jump Street, it shocked me when I heard it on the movie trailer: Ice Cube uses the term "autistic" as an insult towards Jonah Hill’s character. After a detailed presentation from Hill on a bulletin board, Ice Cube mockingly states, "This chart looks like sh*t, are you autistic?" They used autism as a means to get a few laughs. I have not and will NEVER watch that movie!

Now the rapper 50 Cent has slurred autism as well, as reported by Huff Post: The ugly tweets were in response to an eager fan who wrote to 50: "Release the album or get shot again." The rapper allegedly tweeted back, "yeah just saw your picture fool you look autistic." And, he didn't stop there. "I don't want no special ed kids on my time line follow some body else," he posted later."Look autistic" what does that mean? 50 Cent doesn't "look" ignorant but he is!

Why does anyone need to single out a developmental disorder of any kind to use as a mockery for any reason? It is unkind, disrespectful, hurtful, and knowing the autism community as I do, likely to bring down a rain of fire from every corner of the globe. When autism is as prevalent as it is, 1 in 252 girls, 1 in 88 boys, that means there are twice the amount of parents not to mention siblings, grandparents, aunts, uncles, therapists and teachers who can and will strike with vengeance. Needless to say, what was said equals BAD PUBLICITY!

Day #140

Here is Maeve waiting very patiently for our 2p.m. OT clinic appointment at the VMRC (Valley Mountain Regional Center) office in Stockton today. She was such a good girl! Thank you for driving Karen, I really appreciate it! The appointment was quite successful and we should have a new adaptive stroller in about a month or so. Maeve acted very sweet and placid until the OT, Joel, wanted to measure her for the right size stroller. As soon as he came near her with the tape she backed away yelling and pushed his hands, needless to say he got approximate measurements. I also received some great advice on how to deal with my apartment managers about the reasonable accommodations I have asked for and should be contacted by an advocacy group due to the fact that my requests keep being denied. All in all a very good trip :D

Day #139

Happy 4th of July! Independence Day! What better and more sensory friendly way to celebrate then with glow-in-the-dark balloons. Oh, and we also had TONS of bubbles and I see that Maeve is creating her own confetti with a pink party napkin right now, party on baby girls :D

Day #138

Our last extended school year OT day with Aimee was today, boo! Just when we were getting to know her and she was really starting to understand what the girls needed it has to end. She does praise the OT at Soulsbyville Elementary though and it is a good possibility that we will see her around town but she is a great OT and we will miss her. What do you think of the photographs for today? First photograph is a first caught on film: Maeve swinging by herself completely unaided! YAY! Next photograph is Josie swinging on the platform swing on her tummy, she had been trying to pick up little beanbag critters and toss them in a basket. Now we need to find an outing to fill our OT void in the weekly calendar, maybe park and story time at the library?

Day #137

If I can make your autism lifestyle a bit easier I will, here are a few tips and tricks to make your every day just a bit less hectic.

The first photograph is of a jar that I keep in my kitchen full of q-tips, why you may wonder, well it struck me to do this when I had thrown away my gross old bottle scrubber and needed to clean the spouts of my daughter's sippy cups. The sponges on bottle scrubbers can harbor germs like crazy so use these little scrubbers instead, use once then toss.

The next photograph is of our "all done" bin that we keep on the counter. Works wonders for keeping sippy cups, trash and bits of snackables off the floor. Teach the kiddos instead of throwing it on the floor to put it into the "all done" bin when they are finished with it, very useful tool!

The last photograph is a must have if your child uses PECS (picture exchange communication system), it is a "NOT AVAILABLE!" board to put all the icons for the items that are not accessible to the child at that particular time. Make sure it is high enough to be seen clearly but out of reach because if your child is like my daughter she will simply go over the the "not available" board and pull off whatever it is she wants anyways, so we keep ours above our cork board well out of reach.

Just a few trial-and-error tips and tricks I have learned in MY autism lifestyle :D

Day #136

 I hear there are two types of mothers, warrior mothers who have recovered their children from autism and victim mothers who enjoy the attention their children's autism brings them and do nothing to change the fact that their child/ren have autism. This angers the hell out of me! I also see all these supposed risk factors for having a child with autism and it sounds so ridiculous. Autism does not discriminate, it doesn't matter whether you are sick, healthy, fat, thin, rich, poor, white, black, old, young, vaccinate, do not vaccinate, anyone at anytime can have a child with autism. There is NO definitive proof, no cause either genetic or organic that determines who, when and where a child with autism will be born. I see all these statistical risks and if you have this, or if you do this you are going to have a child with autism, where is the PROOF? No one can tell us because they have NO idea why autism occurs, it just does. Some kids with autism are extremely severe and some are nearly undetectable. I don't think that a mother of a nearly typically developing child to begin with should have anything to say to the mother of a child that sits, stares, hand flaps, and wants nothing to do with her that she is playing the "victim"! I get a bit riled up about this but it hits so close to home and I refuse for anyone to even insinuate that I LIKE my daughters having this disorder! I LOVE them for who they are, I want them to be the best them they can be but I do not take joy in the fact that my children have autism, but as a matter of fact I wouldn't change a thing even if it was offered to me on a silver platter. Autism is who they are but it does not define them.