My miracle child

Just look at that happy face.

Miracles do happen here and will continue to happen.

I am full of emotion today. I am tired of people coming into my house and telling me things I don't want to hear or need to hear. We have worked so hard. In August of this year Taylor had lost almost all her words. Pretty much silence. In 4 months she is requesting her favorite foods with words, saying hi/bye/night night appropriately, doing puzzles, building with blocks, swinging, sliding, climbing on the balance beam, laughing, tolerating playdoh for a minute or so, responding much better to (quiet) strangers entering her safe house, playing Mr. Potato Head, crafting with foam stickers, etc. Not to mention she knows most of her ABCs, numbers 1-10, colors, approximately 30 animals and has every book in this house memorized. I can give her 2 or 3 puzzles at once, dump out all the pieces and she will sort through and do them all. She is also acquiring labels naturally- without being formally taught each one through discrete trial. In formal terms this is called generalization and she is very capable of doing this. We didn't have to teach generalization which means she is slowly moving to learning the way "typical" kids learn. Socialization with other children is still one of our toughest obstacles but she is still very young. She can't stand loud kids. Well, I'm not very good at that either so we have something in common.

So these therapists come into my home and tell me Taylor's delays will always be with her. WHAT?!!! She is so on-target if not ahead academically. Yes, we have social things and communication to work on but come on people. They talk of group homes, etc. They have NO idea where we started and what road we have taken. I try to explain and they look at me like I'm talking a foreign language. They don't believe me. I'm in the process of making them a movie of what Taylor was doing 4 months ago. I feel compelled to prove it to them. I tell them the puzzle completion started with me doing one piece (my hand over hers) and then rewarding her with an M&M after each piece. Yes, it was hard at first. Yes, she screamed, hit me, and threw herself around like a wild animal. BUT, guess what?! Her puzzles are now one of her very favorite things. And it was really never about the puzzles. It was all about getting her to focus long enough to complete something - focus long enough to learn. Some days I think we have a little ADHD mixed in all this but that's okay too. The typical therapists have no idea how ABA works but seem to not want to learn. The key is ABA needs to be done properly in order to work. There were days we did formal sitdown sessions on and off ALL DAY LONG. That's what the professionals mean when they say intense 1:1 therapy. They don't mean do a couple things and then let her stim for 15 minutes. We do no stimming around here. It is ALL redirected. ALL OF IT. Yes, I'm tired but my kid needs saved. Who the hell else is going to do it?

Basically it's going to work like this. With direction from our ABA therapist Taylor WILL be saved. ABA is what gave her a strong foundation to learn. If any person involved in her life doesn't want to jump on board well then back off----my little girl and I will run you over.

Peace.

RubberStampMadness Jan/Feb 2008

My "King Ribbit" card made it into the latest issue of RubberStampMadness. Had a lot of fun with this one. It's pretty much straight forward stamping with a spotlight drawn in with chalk.

Frog is Eat Cake Graphics. Chair is Character Constructions. Grass, flowers, and alphas are Purple Onion Designs.

Thanks for looking!

Merry Xmas!

Just a quick post to wish all of you a Merry Xmas.

This card was made for my secret sister. We had each other's names and she totally spoiled me! You know who you are. :)

Character Constructions Xmas cards

Thought I'd revive this blog for a moment by posting a couple Christmas cards. Only had time for a couple. Doll parts are Character Constructions and sentiment is Purple Onion Designs.

Hope you are having a peaceful holiday season.

Crusade No. 14 - Who/what is your muse?

This month's (I'm barely making it) Green Pepper Press Street Team's topic is Imaginary Friends. Basically who/what is your muse? What inspires your artwork?

Well, since I don't consider myself a true artist I really haven't given this topic much thought until now. I had some trouble with this one and then one day it just dawned on me.

Stress--- stress---and more stress.

Maybe it's not a typical muse but I've created most of my published cards/projects under stress. When I am worried about someone/something I can throw myself into my paper, ink, stamps, etc and forget all about it for a brief time. Therapy for Momma. :) Pretty simple really. Maybe it should be called an escape instead of a muse but it works for me.

I'll leave you with a little creation for my ABA therapist. She does totally ROCK. Stamps are Green Pepper Press. Sweet stamps, huh?

Let's talk about the system

It stinks.

Okay----here's how it goes. You get referred for a complete developmental evaluation. You wait 4-6 months for your official appointment to diagnosis your child (sometimes longer---I've heard up to a year in Philadelphia). Birth-3 comes earlier but these kids need intensive therapy. It's not near enough.

You wait longer to get wraparound services. You have to have all these meetings, pick an agency, etc.

So basically you wait over 6 months to get intensive therapy started. So if we hadn't met a gal who knows Lovaas ABA we'd still be in a state of complete panic.

I've said it before. We got lucky. We have made huge strides and it's because of ABA.

So what is wrong with this picture. The typical family has just wasted 6 months of CRUCIAL development time. Time to remap the brain and get on that upswing.

This is the time you hear parents talk about---the time they see their kids "slipping away."

Sad, huh? No not sad------------------horrific.

President veto

You can check it out here.-----I guess some still don't view this as a crisis.

http://aliedwards.typepad.com/_a_/2007/11/veto-impacts-au.html

It's official

We are offically on the spectrum---PDD-NOS to be exact.

Pervasive Developmental Disorder- Not Otherwise specified----translated into "we know there's something up with your kid but we don't know what exactly so we'll put her in this catch-all category." The good part is we do have the label so we will possibly qualify for more services.


I really don't feel like sharing my emotions today. There are some days I'm just overwhelmed and don't feel like explaining everything. Today is one of those days.

The psychologist will recommend 15 hours of wraparound therapy done in our house (in addition to the 4 therapists we have already). The psychologist seems to think we will be denied and will have to appeal to get the therapy. Joy. Isn't that sweet? I guess in Washington county they don't like to approve services for kids under 3 years old. By 3 years old it's so much more difficult to "catch up." So unfair.


We make strides every day but until you've had a child with these challenges you'll truly never know what it feels like to be part of that 1 in 150--to watch your kid struggle with things that come so easy for other children.

She is just such a smart and sweet kid.

She doesn't deserve this and it sucks.

Tomorrow----it ain't no big thang really................

Tomorrow is our official evaluation with the Child Development Unit of Children's Hospital in Pittsburgh. I look back at all the emotions surrounding this appointment and I'm finally in the correct state of mind. I've been all over the place emotionally with the appointment----everywhere from panic to dread to apprehension, etc. When we were first referred I couldn't wait for tomorrow to arrive. Then we met someone who has forever changed our lives. An amazing person who truly cares about kids and will go above and beyond. She literally trained me to be an ABA therapist to my daughter. WE GOT LUCKY. We were in a very dangerous place. You know that place you hear about on talk shows---"she was slipping away right before our very eyes"-----you watch any talk show about autism or any developmental disorder and you'll hear those words and dear God do I feel for those people. It was quickly happening here. I know Taylor's mind was making misconnections daily. I'm absolutely positive that was happening. We caught it in time and we are remapping as we speak and folks guess what?!!!! It's working. It's working. I know there are some people who think if we wait and see she will just come along in her own time. WEll, this momma can tell you that would've never happened and that's one risk in life Mark and I are NOT willing to take. Mothers ALWAYS know. ALWAYS. Her behavior was alarming and made me uncomfortable inside. If any mothers out there are experiencing the same feelings then you push your pediatrician to refer you on-----you PUSH like you've never pushed before. Your child is counting on you to do so.

I think back to filling out all those daunting blue forms we were sent when we first made THE appointment. I think about all those questions I answered. I am taking a different kid tomorrow. We have plenty to work on and many obstacles but they are being checked off one by one. I remember Early Intervention coming and asking me how I wanted our family social goal to be written----I simply replied, "I just wanna go out to a restaurant or store without a huge screaming struggle. I just want to be a family." That's it. Simple, right? Well it took a lot of work. We have been successfully out to eat twice in 2 weeks and to Walmart twice in 3 days. We have conquered the grocery cart----along with the sliding board and swings and trampoline. HUGE sensory progress folks. We will continue to work on playdoh, elevators, hair dryers, strangers, vacuum cleaners, loud environments, etc.

ABA therapy (done correctly) has changed our lives. Seriously. It is working for Taylor. It may not work for all kids but it is working here. She is feeling success. That is what it's all about -- her success which has quadrupled her confidence. She is so much happier now. Less frustrated with daily life---still frustrated with trying new things but we can work through it. She is so proud of herself when she makes progress. She knows. We still have a few bad days here and there but we won't focus on those right now. She's only 2 years old.

Soooo---this family still struggles and does tremendous amounts of therapy but we also trick-or-treat, go to the grocery store, do puzzles, read, jump on the trampoline, write, play chase, eat popsicles, watch Mickey Mouse Clubhouse, do more puzzles, hop, eat in restaurants, and many more typical family things.

So ya see tomorrow won't be a day to remember-----August 21, 2007------now that's the day to remember. That's the day we began ABA therapy and the day my child turned a very important corner----the corner of SUCCESS.

YIPPIE!!!!!!!!

Today Taylor was nearing the end of her yogurt and she looked at me and said "help" as plain as day!

Yesterday she went to the kitchen and said, "wa wa."

We are getting past the sensory blocks day by day with the trampoline and tunnel and bean bag and brushing and on and on. She is learning incidentally after I repeatedly say the same word in the same context day after day!!!

Yep----we are gonna be okay eventually. Okay is good. It's gonna click.

Impressive progress

Thought I'd fill in ya in on Taylor's progress. I know there are quite a few friends and family reading this blog these days.

Our "typical" week here consists of 4 therapists and constant sensory and ABA therapy pretty much done by me. Under the direction of our ABA therapist who comes once a week and does updates/therapy we have implemented an ABA program that seems to be really working for Taylor. I have an entire notebook full of data. I do ABA therapy with Taylor spontaneously throughout the day and in actual sit-down sessions. We are acquiring more and more skills so we not only do new things but we also have to map out time for review. It's an all-day affair which is fine with me because the more she sits and works the less time there is for shadow play. Early Intervention therapists also come to the house and I find ways to incorporate things they are doing into our day. The trick is finding the way to present it. Taylor learns in different ways. All it takes is finding what clicks. It can be tricky or it can just occur incidentally. I notice more and more incidental learning which is huge!

I have taught her to imitate. Our ABA gal says if a kid can imitate they can learn anything. Maybe it will take us a bit more time but it'll come.

I truly believe that we caught her early enough to turn this whole thing around in a couple years or so. I know it won't be easy and we'll still have to teach things in different ways. We live, breathe and eat therapy but that's what it takes. I will not be a parent who sits back and just lets it be--not judging others - we have fortunate circumstances working in our favor here. It won't always be this tough but we just have to suck it up for now. Forcing your 2 year old to do things isn't easy but she'll thank me later. If we would have just "waited to see" what happened we would be in BAD shape right now. These kids have to be caught early. Catching it early gives time to remap the brain.

WEll---our appointment with Children's Hospital is 2 weeks away now. I have no idea what they will say. I am taking a different child to that appointment now. She has changed so much. We still have tons to work on (especially unfamiliar people and places) but she has changed for the better with all this therapy. All the therapists are a little in awe at what we are accomplishing in this house with ABA. I think we've made believers out of a couple of people who weren't so much in favor of the process. I have no idea what the professionals will say because I'm sure most people go into that appointment without ABA therapy behind them. We have been working extremely hard for 2 months. We just got lucky and was sent the right person at the right time. Funny how that works.

WEll, off to review my "lesson plan" while Taylor is napping. I map out a lesson plan each night for the next day. It works. It is my job now and that's totally cool. I'm armed with the knowledge and tools to save my little girl and that's EXACTLY what I'm gonna do. :)

Peace.

age 2

This is Taylor on her second birthday. Cute as always.

I reflect back to this time and I realize how far we've progressed in 2.5 months. At this point all we were doing was stacking blocks, reading books and watching TV. She is doing so many different things now. There's great hope for her future.

Materials used--mostly Daisy Ds except for the flowers which are Heidi Swapp. Don't ya just love that pink paper? It's part of their fall line I think---odd but if you'd see the entire pack of paper it just fits.

Happy Wednesday!

RubberStampMadness/childhood

Made it into the latest issue of RSM. Look at that cover. How do those cover artists come up with this stuff? That's all stamping!

That story at the end of the article takes me back a few years to a different way of life. My childhood was a little different than most. We were by today's standards considered to be low income/poor. My parents had me young. My Mom was the ripe old age of 19. They started a life with nothing and a colicky kid to raise. We may not have had an excess of money but I wouldn't trade it for the world. We raised all our own vegetables. My Dad worked a difficult manual labor job all day and came home to spend the evening tending to a garden and mowing grass. We never spent an evening indoors in the summer. We socialized with the neighbors each and every night because we were all outside. We had 2 TV stations. I think this is why I can read so fast. Books replaced TV. lol. We lived in trailer which my Mom kept so clean you could've literally ate off the floor at any time. We took our laundry to "town" once a week to the laundry mat. Santa coming was a huge deal because toys weren't casually purchased weekly as it goes today (incidentally-- I was sick every Christmas. I swear it was due to excitement). We ate dinner as a family EVERY night. We appreciated everything more. Kinda sad the direction society is going in these days. Such hustle and bustle and inattention to what is really important.

Ohhh, gotta tell ya about the laundry mat---well, that was my first brush with the Hare Krishna community. The Krishnas were big in our area back then. The temple was being built and they had visitors from all over. They were in full swing. They would come to the laundry mat in their vans in full garb. White sheets, bald head, pony tail--the works. Now you can imagine as a kid whose highlight of the laundry trip was Welch's grape soda and corn chips this scene was quite fascinating. My Mom would tell me not to stare. Come on---how could I not??? Was nothing to see them chanting outside the Kroger store. They were also always at the tail end of the Christmas parade. I remember them parading their elephant past our junior high school and throwing candy at the windows to the kids. Recruiting I guess. I wonder what it's like up there now. You don't hear much about them anymore. Not judging a different way of life or anything--how people live is their personal business--- but they sure did stick out in good old Marshall county where different is not always tolerated.

Enough about the ole days. Life sure has changed. I'm just not so sure it's changed for the better. Do you eat dinner with your family each night and actually TALK to one another?

pumpkin patch 2007

Nothing screams fall like a trip to the pumpkin patch. I love this time of year. The changing of each season is pretty cool but fall is just full of the most beautiful colors. Mark's work sponsors this little trip each year to Simmon's Farm. I think that's pretty cool too. I'm a week late posting this but better late than never.

To some this is a simple fun day at the pumpkin patch. To us - well - it was a great success. There are several sensory issues presented at the patch. Walking on uneven ground, the shaky hayride, the corn all the kids were playing in to name a few. Taylor did fantastic. The corn the kids were playing in was just plain gross and dirty so I don't blame her for not wanting in that mess. The ride out to the patch was just fine--held her close and she did okay. The ride back she cried but I found it a bit rough and fast myself. She walked on the uneven ground in the corn maze holding Daddy's hand and was just a champ! We also had the advantage of our ABA therapist friend going with us. She is just at the top of my list of favorite people right now. Without her I would have no idea how to help my child. I just love her and her son. Great people I tell ya.

We came home and Taylor was ready for a nap. I was rocking her and I stared straight into those gorgeous brown eyes and told her how proud I was of her and what a great job she did that morning. I was presented with a huge toothy grin. Without a doubt she knew exactly what I said that afternoon. Priceless.

Crusade No. 13- Get Gothic

The theme for Michelle Ward's Green Pepper Press Street Team crusade this month is Get Gothic. Share your Halloween creations/decor etc. I really had a good time creating Halloween cards this year. Usually I just send them to the kids but I had some cool stamps to work with this year.

On this first card I used a danger sticker from the new Martha Stewart line. I don't care for most of her craft stuff but her Halloween line was very cool. Swirl stamps from Green Pepper Press, skull baby from Stamp Francisco I think, bat from Stamps by Judith, and skull from Inkadinkado.

This next creation I submitted to RubberStampMadness but it didn't make the cut. Oh well. All the cirque people are from The Tattered Circus, circles from Purple Onion Designs, and the bars they are sitting on are Paperbag Studios.

The card below uses a sticker for the focal point. Warning sticker is Martha Stewart and the other stickers are Daisy Ds and Making Memories. The funky laced type border stamp at the top is Stampers Anonymous, circle stamp is Moon Rose, spider is Savvy Stamps I think either that or Amuse, added bling with Stickles glitter glue.

The next uses another Martha sticker and a sticker for the focal point. Cat was cut from DaisyDs patterned paper, Daisy Ds black cat rubon, bat is Stamps by Judith, houndstooth border is BLine Designs.

The next creation uses almost all Marth stuff. Haunted stickers are DaisyDs and the background paper is from the latest issue of Somerset Studio. Rest is Martha.

Last--- a simple creation on a dollar spot card from Target. Spooky word is Purple Onion Designs, Frankenstein is Amuse I believe, moon is a section of the Moon Rose stamp used above on the Pumpkin Patch card.

That's it folks!!!! Have a Happy Halloween season.

Tough phase

We've entered a difficult phase in the Infantino household. Taylor has figured out we will not allow her to play in her reflection all day instead of learning. She is most unhappy about this fact. She takes off and tries to sneak. She sees me coming and quickly stops and gives me an "ehh" in a most annoyed tone. That simple "ehh" was how it started a couple days ago and now we are at full fledge tantrums, hitting, etc.

I think the need to "see" herself comes from the fact that she sometimes doesn't "feel" her body. The trick is to find an "acceptable" way for her to feel grounded - an "acceptable" way to meet that need. Easier said than done. For example---instead of her running back and forth and back and forth in front of her reflection for an extended period of time perhaps we could read books in her worm tunnel. The tunnel touches her on all sides therefore grounding her and she learns by reading at the same time. Problem is this will satisfy the need for a few minutes and then ya gotta think of something else. Makes for a very long difficult day. This sensory stuff is a whole new ballgame for me. I'm so tired I sleep all night and during her naps. I dream all this wild stuff too-- my mind is overloaded.

So today I saw a lot of trying to replace that need to see her reflection----rubbing her face all over me, rubbing her hair all over her face, crashing into the couch pillows all day, rubbing her chest against mine, staring at her arms and hands, etc. Once again you gotta keep this kid busy ALL DAY. We are doing better with that since we now know how to use more toys. It's very difficult when you first begin because if a child doesn't know how to play with toys then what the heck are you gonna replace all this behavior with?! It's step by step by step and it's difficult.

Some of you reading this may think that playing in your reflection is a normal thing----well, not all day. It then prohibits learning and becomes the primary focus of the day. Unacceptable.

Occupational therapy offically began this week. Taylor did well for her first visit. She was able to put her hands and feet all through a container filled with beans. She was also able to tolerate pulling objects out of therapy puddy. Therapy puddy is stiffer than playdoh. It's a step toward playdoh. I think Taylor would rather eat liver than play with playdoh at this point. She runs from me if I get the playdoh out. This explains a little why Taylor is such a neat eater. We do not like stuff on our hands or face. Think about your hands being sticky from syrup and multiply that by a thousand--that's how Taylor feels when her hands are messy. We will begin brush therapy next visit. It is done every 2 hours for 2 weeks and then I think the frequency tapers off. You brush their arms, legs, hands, feet and back and then apply pressure to the joints. She explained the whole process better. Think about how great you feel when you've had a massage. That's a good comparison. You feel grounded, relaxed and more in tune with your body. That's what brush therapy should eventually do for Taylor. I can tell you it she won't like it much at first but she'll eventually desensitize to the whole process just like everything else.

Taylor has a lot of sensory issues that affect daily life. She despises vacuum cleaners, hair dryers, loud toilets in public restrooms, hand dryers, etc. They are annoying to the average person but very amplified for her. She is terrifed of them and they hurt her ears BAD. She also does not like the feeling of being in an elevator. She shakes a lot and screams when in elevators.
She also does not like to swing but we are working on that. Our ABA therapist says the therapeutic effects of swinging can last for days. She won't touch the balance beam at the Little Gym. Just think of anything that would make the average person just a little uneasy and multiply that by a thousand and you might be able to imagine how if would affect my little gal.
Once again---some of these things are normal for a kid Taylor's age but it's the DEGREE of how it affects her. These things cause great panic for her.

She is quite the mix---hypersensitive to some things (vacuum) and hyposensitive to others (feeling her body---that need to "crash" into the couch). It's all so complex and difficult to explain. I know her so well. I know pretty much how she'll react even before the situation arises. Her and I ---well, we understand one another much better these days.

Speech comes tomorrow. To leave this entry on a positive note---Taylor is beginning to imitate more of our words. They aren't initiated on her own yet or a request for something but she can make the sounds! She can imitate words in books and everyday conversation. You have to really listen sometimes and figure out what she is saying but she is trying so hard. She is so smart. If we didn't have all this sensory stuff to work through I firmly believe we'd be fine. It just affects everything. The way I understand it is if you don't feel comfortable within yourself you don't learn receptive and expressive language. We'll be fine anyway---we just work a lot harder around here.

There are days I wake up and think "dear Lord another day of this?" and there are days I wake up and think "bring it on." I am noticing more "bring it on" days---a lot more. If I have to die trying we will overcome this. There's no other acceptable path. There just isn't. I won't allow it. We are talking about my daughter here. She doesn't need to be perfect. I just want her to be happy and independent. HAPPY AND INDEPENDENT.

We will achieve both of those things. WE WILL. I promise her that daily.

Taylor thoughts

I love you.

Perfection is highly overrated and utterly ridiculous.

Thank you for trying to understand me.

Thank you for not denying that I need help.

I need fun.

I am so smart.

Daddy is loads of fun.

My mood is a reflection of yours.

I don't like sticky hands.

Lots of kids are too unpredictable for me for now. I like one on one and quiet. Maybe that will change or not.

I can't stand loudness and chaos. It makes me frantic inside.

I will conquer the swings. I mastered the sliding board, didn't I?

I am so cute.

I will continue to surprise you daily.

I don't feel comfortable in my body yet but I will and then I will talk to you A LOT. I have to feel comfortable first and then I will learn more.

I love ice cream - just like Daddy.

I prefer soda over water. Could you adjust that please??

I like your hair.

Thanks for turning off the TV so I can learn more. I would watch it all day.

I am like the other kids but I'm much more special.

I don't like crayons. I like ink pens.

Thanks for working with me all day. I would prefer to play in my reflection but I'll take you.

I will give you kisses any time you ask. This is your reward. Cherish it.

Now you know your priorities- without a doubt.

Hug me close when I feel uneasy in public.

I love my dog. She's funny and I love giggling when she runs around the kitchen.

Sleep at any time possible. I have lots of energy-more than most.

I am very persistent, just like you.

I teach you much more than you teach me.

I will want a drink of anything you drink.

Home is my sanctuary.

I have a hard time feeling my feet in strange places so slow down.

I love crashing into pillows.

Thank you for teaching me to play with my toys.

I am stubborn, just like you.

I love music.

Quit analyzing my behavior and just be with me.

Help me and I will help you.

Unfamiliar places are too much. Take me back a little at a time or I will show you my displeasure.

Life is just that--life. It is imperfect.

Sometimes you just gotta get through the day and call it a night.

You are much more grounded because of me.

There are days I will bring you to your knees.

My accomplishments are huge. HUGE.

We play by an adjusted set of rules. :)

Once again----I will teach you much more than you teach me.

Love and Peace
Taylor

Ink blot Halloween characters

Thought I would share the last of my ink blot characters. The second isn't really my style but it's for the kiddos so I didn't want to get too scary. lol.

I won Michelle Ward's Street Team crusade! So cool.

We are doing okay around here. Taylor has a little cold. Other than that just normal therapy stuff and everyday life. I have quite a few Halloween creations to share and a few Taylor layouts so be sure to check back soon.

Peace.

card and my state of mind

Stamps are Character Constructions, pp is DaisyDs, stickers are Martha Stewart and Making Memories.

I am so all over the place with my emotions. I love Taylor so much and all this uncertainty is so tough. I wish our Children's Hospital evaluation was before November. It is sort of looming over my head. I guess I need that to move on to a real acceptance phase of whatever label they give her. Not an acceptance of her (she'll always be the love of my life) but an acceptance of a different life. An acceptance of different obstacles to overcome. An acceptance of what life has dealt. I feel stuck on an emotional roller coaster---a ride that seems to never end. I need some sort of final word- so to speak. The label won't change a thing but it will give my head something to wrap around, some way to move forward instead of just wondering all the time.

I just wanna know if there's gonna be ONE night I don't think to myself as I close my eyes to go to sleep----- what in the world will happen to her when I die? if she only improves to a certain extent who will take care of her and love her like I do?

Like I said---emotional roller coaster.

Update for family and friends

Mark and I have made some decisions regarding Taylor and therapy. For now we will be having Early Intervention come on Monday and Wednesday. Tracy will come on Tuesday. I'll work my nursing job mostly Thursdays and Fridays will be Little Gym. Our Monday gal's appointments are all scattered in October but November will be on a constant Monday schedule. We will continue to work on ABA at home all day.



We decided to wait on Children's Therapy Center until we go to Children's Hospital in Pittsburgh in November. Tracy, Mark, and I all agree that a gradual entrance into therapy is smart for Taylor---not for everyone--but for Taylor. My gut feels this is what should be done.


Her and I work well together using ABA at home and I don't want to entirely throw that off with an abrupt entrance into therapy every day for hours. That may all change in November when we go to Children's. I'd like to see what they personally recommend first. For now thank God that we met someone who could basically give me a crash course in the ABA arena. This is not for everyone. It's tough. More tough to do on your own kid than anything. Thank God for mini M&Ms.

I just want to say these decisions are right for my kid--each and every kid is different. If you are reading this and going through something like this just keep that in mind. I am in no shape or form trying to guide anyone. This blog basically keeps friends and family informed of OUR situation.


In 5 weeks we have made significant progress. She will now scribble with a pen (crayons not a favorite here), use her Magnadoodle to stamp shapes (was clueless what this thing even did a month ago), loves the slide, can swing on my lap for a couple minutes, is pointing to request food and drink, and is babbling on and off. We have also heard the words "da-da" and "ma-mum" again. She can say "dup" aka pop if prompted. We have also heard cake, up, bite, coo-kie, and a few others that are questionable but I think are words that just need ironed out. We can also do matching puzzles, some gross motor imitation, etc. We have came a long way without conventional therapy. This is all at home! We are working so hard. We learn in very small steps so the above accomplishments are very big and take time.

We do still have the shadow play a lot but I always try to redirect her. We now have Halloween window clings on each and every reflective surface of the kitchen. I'll be glad when fall comes and the sun doesn't shine as much. No doubt SOME of this is play but some isn't. When she starts that methodic back and forth it's time to do something else.

We have had a couple great playdates with Tracy's 4 year old son. She is very comfortable with him. He is a very well- behaved fun boy! It's great for her to see him pretending. They sat side by side in the car yesterday---very close in the carseats. She was very okay with that. I think she was saying the "k" sound for his name also. We continue with the Little Gym and playyards and playgrounds and restaurants. Little at a time with gradual increases here and there. She does well.

Thought I'd throw in a little Halloween card for fun. Stamp is Amuse. Cards are from the dollar spot at Target. I just added the scallop part.

More later. I have several Taylor photos to post---all her new accomplishments!!!

Couple more ink blot characters

Mona is from the Stamping Zoo which I believe is now closed. All other stamps are Character Constructions. I have boatloads of Halloween cards to share. I'm not in the mood to scrapbook so I've been taking an hour each night to do a little stamping aka stress relief. :)

Autism on Oprah today

Just thought I'd throw that out there if anyone wants to watch. :)

Good/Bad news

Good news---we qualified for the medical assistance card based on the letter from Taylor's pediatrician. This means all these evaluations should be covered. Of course ABA therapy is never covered but this means as of now we won't be receiving a boatload of bills in the mail. It's retroactive back to August 31. :)

Bad news (but not really)--I don't know where my head was this morning. I pulled out of the garage and left the garage door open. This means the house was left open the entire time we were gone. I then came home and kinda chuckled to myself that I left the garage door open and then proceeded to drive the Escape right into the brick while pulling it in the garage. Did nothin' to the house but scraped the plastic pretty good on the vehicle. I looked at it and thought, "ah, it's just plastic" and proceeded with the rest of the day. Six months ago I'd have been beside myself and today I just blew right past it without much thought. In fact I thought "whateva---just a car." lol. Priorities have changed significantly.

Great day at the Little Gym. T and I had LOADS of fun!

Something Fun---Crush on You Crusade

Michelle Ward's Green Pepper Press Street Team blog has new crusades each month. Just little fun challenges to encourage us all to share information and art. This month is titled "crush on you." Michelle's crush is red so I dedicate this one to her. I was totally inspired by Sandra Evertson's ink blot characters in the current issue of Somerset Studio magazine. So fun, easy, and fast. I will be posting more of the eery creatures toward Halloween. Keep checking back. This blog isn't all serious ya know. Gotta take a break from conventional therapy and do some art therapy. :)

All stamps Michelle Ward for Stampington aside from the skull which is Inkadinkado. Isn't this little she devil cute with her Prima flower skull hat!

Physical Therapy eval

Taylor will also have physical therapy 2x/week. We have the occupational therapy eval. the week after next. I'm thinking they will definitely want to see her for that also. So it's gonna be 1.5 hours 2x/week for them and whatever Early Intervention wants (guessing 2x/week also) and our ABA gal 1x/week with me doing ABA each day also. Are you tired yet? lol. The one day that is left will be the day I work---hopefully.


The therapist was concerned because Taylor toes in so much. She has from birth. I thought they might want to work on that. They also want to work on jumping. They are not at all concerned with her strength. Trust me---she's strong. She gives me a workout during these evaluations.

I told them I want Speech therapy to be the first component of her day. If it's in the middle or last she may have already had a meltdown and nothing will get accomplished. At this point communication is the focus. I also told them I want the SAME therapists each time. If not she'll spend each session just fighting a stranger. She doesn't care much for strangers especially strangers in an office that sorta resembles a doctor's office and an office associated with work. After all---what 2 year old WANTS to do these things? The best 2 year old on the best day might be a little irritated by the whole process.

These CTC evaluators all have a week to write up their reports and then we'll get a feel for a concrete schedule. I'll feel a little better when I know what I'm going to be doing weekly.

Next week-----ABA gal on Tuesday and planning meeting with Early Intervention on Friday with the ABA gal present. THANK THE LORD SHE IS COMING!!!!!!!!!!!!!!!!!! You see---the conventional speech therapists sometimes don't favor ABA. (This is just my opinion so no nasty emails from anyone, ok?, every kid is different). ABA is very very expensive also so we are just gonna approach the subject with Early Intervention because there are ABA therapists in the area - some division of UPMC provides them in-home. I don't think any insurance companies cover ABA. Basically our ABA gal is gonna be my parent advocate to try and acquire ABA therapy through Early INtervention for free. It's a longshot but worth a try.

Haven't heard anything about the medical card. Plan on calling them on Monday. I know our caseworker was on vacation this week.

We have a playdate today with our ABA gal and her 4 year old son. Fun. That's it. Fun. Ya see---it's real tough getting caught up in all this and remembering a 2 year old craves FUN. We are also going to the Little Gym on Monday. It may be our last time because of scheduling be we are goin' on Monday for fun.

That's all folks. Hope this blog is keeping family informed and will someday help someone else who is feeling lost.

Speech eval at Children's Therapy Center today

The therapist scored her around 8-12 months on receptive language and somewhere between 12-14 months expressive. I think that was it. We talked about so much I had to ask twice but they will send me a full report within a couple weeks. We will go there twice a week for speech therapy and I'm guessing Early Intervention will want to do speech once or twice a week in the home plus another person will come through their agency (forget the title but they are like a catch-all to sort of help you with a little of everything). The speech therapist at Children's Therapy Center seemed to think the occupational therapist will probably recommend OT twice a week also. We are lookin' at 4 days/week of various therapies and I'll work one day. I'm trying really hard to keep my job. Oh, we'll have to fit ABA therapy in there also. So, another afternoon plus any of our free time will be taken up by ABA.

Taylor took a tantrum in the middle of the eval today and started some of her hand motions. Wasn't too bad. A couple months ago she'd have screamed the entire time just being in the room with a couple strangers.

In case you are confused between Early Intervention and Children's Therapy Center- it's easy. Early Intervention is home-based and free through the county or state--one of those. Children' Therapy Center is an outpatient service of The Washington Hospital. Not free so let's hope we get that medical card. The paperwork was all in as of Friday.

Our ABA gal comes tomorrow and we have a physical therapy evaluation at CTC on Thursday. We have a planning meeting with Early Intervention next Friday to determine exactly what they want to do but my guess is what I listed above. We briefly touched on what they would want during the eval yesterday but the "formal" meeting is next Fri.

Met a couple Moms in the waiting room today. They are surviving and so will we. Taylor was surprisingly at ease with the children in the waiting room. :)

Let's change direction for a moment

I'm gonna share the last of the Taylor layouts from a crop I attended weeks ago. This blog has to take a more positive turn.

Results

Early Intervention came today. It was tough.

Scores (keep in mind she is 25 months old chronologically):

Cognitive (thinking, problem solving, play skills)----8 months
Communication (understanding and expressing needs and wants)--receptive 15-16 mos.
expressive 14 mos.
Social or Emotional(engaging others and interacting)--18 months
Physical(large and small muscle development)---gross 17 mos. , fine 15-16 mos.
Adaptive (self-help such as feeding/dressing/etc) -- 14 months


Well, there ya have it. Had we not had help from our friend in teaching her how to point and respond to her name she would've scored lower.

Was strong and okay with those results till afternoon and then I felt it REALLY hit me. Life will be lots of therapy for quite a while and lots of hoping and praying for progress. I'll apologize up front for not wanting visitors and not visiting or making return phone calls. I don't have the energy today to call my own mother. Some days I just can't think or talk about it for another second and I can just deal with getting through what I need to get done on a daily basis. I have to teach her what I can with what skills I've been taught by a very generous soul and it takes time and persistence. Sometimes what the system provides is just not enough. I have to get it together. There are so many more people out there having an even tougher time. Feels selfish to actually type out some of these feelings but they are real and they hurt a lot.

One evalution down----3 more to go this week and one next week. One day at a time. Let's make this blog realistic----today just totally sucked. Sucked, sucked, sucked.

Tomorrow is another day.

Next week

Mon.-----Early Intervention complete evaluation
Tues.----Speech Evaluation at Children's Therapy Center (totally lucked out here as they had a cancellation and our original appt. was for December AND I found someone to work for me)
Wed.---ABA therapy with our friend
Thurs.---- Physical Therapy evaluation at Children' Therapy Center


Sooooo check back next weekend if you are following this blog to check on Taylor. :)

Each day

Made this collage last week. Good stress relief. Lady and bird stamps are from Character Constructions and the days of the week stamps are from Purple Onion Designs. These photos are a bit blurry. Should've waited for better lighting. Also used some vintage wallpaper for the base. The flower was originally white but I spritzed it with Adirondak color wash.

The matted photo in the background was inspired by Karen Michel from her Altered Imagery book. You basically take a regular film photo (no digital)- soak in water and scrape with a paper piercer or anything sharp. This shrub is right outside one of our windows. I was hoping to get a window effect by placing it just so. This collage has special meaning to me so it will stay here. :)

Perspective

My friend will bury her 28 year old son tomorrow- her only child. Unexpected tragic accident. She lost her husband last year unexpectedly. Found him dead in a chair. She has lost her entire immediate family---basically everything. She is one of the nicest people I've ever met. Totally does NOT deserve this.

Puts things into perspective, doesn't it?

Quick update

The hearing test determined Taylor is able to hear normal speech sounds. Couldn't really complete the entire thing because she was crying and afraid of the room. Honestly I thought it was a little closed-in and dark myself. We were there for 2 hours. lol. The lady kept trying but Taylor didn't want to have much to do with the whole procedure. She wouldn't keep the plug in her ear for the computer to test her hearing. Basically there are 3 ways they can test for hearing deficit---her turning her head towards sounds in a soundproof room, the earplug connected to the computer, and testing under general anesthesia. I saw her head turn enough times to be satisfied with the results and confident that she is hearing. Anesthesia would just be ridiculous. The lady was also very confident that she is hearing normal speech sounds.

We have had the BEST weekend. We went out to dinner twice with Taylor and she did SOOOO well. She sat on my lap the entire time but who cares. She actually enjoyed herself. And----for the BIG BIG news------Taylor went down the slide 4 times and kinda enjoyed that too. She also sat on my lap and let me swing her for a brief moment. She is babbling more too. We work with her every day and I am seeing a big difference. :)

Mark took me to the Waterfront for an early birthday. We ate at Rock Bottom and went next door to see the dueling pianos at Sing Sing. We had a great time. Just the 2 of us. The piano players were very entertaining and I would highly recommend it. Fun stuff. We needed it.

Early Intervention comes next week to fill out paperwork and our ABA therapy gal comes also. She's gonna be so proud of Miss T!

Can she get any cuter?

I still haven't shared all the layouts I completed at the crop a while ago. This is one of my favorites. She's just SO darn cute.

Off to a hearing evaluation today and more phone calls. :) It's gonna be a caffeine day for me. Tired.

Taylor update and published card

Made it into the current issue of RubberStampMadness. Funny how fitting this article is right now. Going through all this waiting/teaching/tantrums etc. sure does test a couple. It's all okay. I should be in the next 3 issues of RSM if anyone gets a chance to check 'em out.

On to more important issues. I took Taylor to the doctor last week (for a rash which was probably roseola but I just used that as a reason to get in) and I ended up seeing my pediatrician's partner. Well--I swear things do happen for a reason. Of course I quickly dismissed the rash and moved on to more important topics. He ended up referring us to Children's Therapy Center in Waterdam Plaza and we have physical and occupation therapy evaluations scheduled in September. Speech eval. not till December!! Obviously kids have trouble speaking these days. That's okay though. At least the ball will start rolling a little sooner and maybe she can start those therapies. I'm not sure how much of those she'll really need but I'm sure she needs a little help. If I hadn't seen the partner I STILL wouldn't know about this place. Of course they can't diagnose so we will still be waiting for a label until Nov. 14 from Children's Hospital. That's how it goes folks. You need a complete evaluation and a diagnosis in order to get certain services. Thank goodness we can get the PT/OT evals done earlier though. We are also in a better position knowing someone who works with autistic children. My ABA therapy notebook is full of notes from this week. We are working on non-verbal requesting (pointing), responding to name, matching (which my kid is SOOOOO doing well at this), gross motor imitation, object imitation, self-help skills and I forget what else. We are in a unique position here. Most people don't have the help to get this started. We are lucky we know someone who is willing to help us so much. Damn lucky. She is coming up again tomorrow. I also called Early Intervention AGAIN today. They should be calling me back any day now to set up in in-home evaluation. I also called the welfare office on Friday to get a Medical Loophole form to get Taylor medical card. I guess that will cover Taylor's PT/OT therapies at the Children's Therapy Center if our insurance doesn't. I don't think it is based on need. That right there is very valuable information folks! Ya see--this is possibly gonna get really expensive and every bit helps.

Anyway, as far as home ABA progress goes----Taylor was resisting everything at first--really resisting. We went from trying to just figure out what she wanted to making her actually work for it. Lots of tantrums. We still have them but the first few days were brutal. She is resisting less now. She is even pointing at things-infrequently but it's showing progress. She is really resisting responding to her name. I can see the resistance letting up a little though. She is very proud of herself with matching and so am I! Funny how every little accomplishment is savored now. Be careful what ya take for granted.

Lemme tell ya---this kid hates strange places and strangers - restaurants especially. And going in doorways that are unfamiliar. No likie. We are working on it and it's very exhausting. I have learned really quickly not to give a crap about all the people staring. We also started back to the Little Gym today which is so good for her. She's not into following directions (can't really process directions) or much close contact (little girl came up to her today and she backed up and put up the elbow) but the running around is great for her. Baby steps.

I am going to continue to post all this info plus some fun stuff. All work and no play.....
I hope this information helps someone else. I know I've read blog after blog and it felt pretty damn good to know I'm not alone.

I'm off to bed. This is so exhausting. Never in a million years did I think I'd take the role of mother/in-home therapist but that is where I am and it's all good. Not all days are good but as far as the big picture goes---it's all good. After all---Taylor is lovin' the chocolate rewards that go along with therapy. She's my kid. My very bright, smart kid. One in a million that kiddo.

A little funny and turning a corner

I thought this blog could use a little humor--hence the layout. lol. She's a doll!

We have turned a corner in this house. The "it's okay" corner. If Taylor is simply a bit behind or if she gets diagnosed with something else it's okay. It's life. We are implementing ABA therapy in this house NOW under the guidance of an angel who shall remain nameless. Honestly---it's kinda fun. We had the best time this morning. They'll be trying times but the good times are great. She is so funny and sweet and laughs like crazy sometimes. She has been sick for a few days too. She has had a fever and now has a red rash all over her body. Measles (surely not), Fifth Disease, who knows so we are in the house for a few days. It's some childhood funk. So--Amanda--if you are reading this thanks for the playdate invite but we'll have to pass. I don't think the other mothers would appreciate our attending and spreading disease. lol.

Thanks to friends and family who are so concerned about us. We are doing fine now. The initial shock of 'you need to get your kid evaluated. she's behind' is over and we are back to life. It's a short life and we will live it the best we know how. Love you all.

Good afternoon at playyard

There weren't many kids at the playyard today. It was calm and Taylor actually climbed on the slide. She also let another girl about 4 years old come up to her and Taylor muttered some sort of jargon to her but it was intentional. It was initiated by my kid. Maybe I'm just grasping but it felt good. It is a little hope. I'll be taking her around kids constantly now. I have to make sure part of the social backwardness isn't just a product of limited exposure to kids. The last time we were there it was wild. Maybe she is just overwhelmed by wild kids?? Please let that be the case.

Maybe we have a big speech delay coupled with a very shy kid? She has always had stranger anxiety. We have been working with her like two nutcases.

Regardless-----we are prepared to take this on no matter what it is. We are stronger than we've ever been.

This blog will be full of crazy thoughts and many ups and downs. Fair warning. I'll be grasping at every little thing too. I need hope.

ONe last thought----all you parents out there that let your kids watch the Wiggles. Well, watch out for all that hand flapping. Kinda makes you wonder if your kid is imitating or actually has a symptom. I'm just sayin'...... We no longer watch the Wiggles in this house. We no longer watch much TV of any type when Taylor is awake.

I'm 95 percent sure..........

that we are a statistic. A very heartbreaking statistic. The 1 in 150 statistic. A gut-wrenching statistic. A statistic I never EVER imagined would land in this house. A statistic that has ripped a world apart. A statistic that makes me cry at will. A statistic that means my daughter may never know the "normal" joys of life. A statistic that makes me hate the other mothers at the park. A statistic that is so unfair I can't even imagine ANYTHING worse. A statistic that keeps a light from going off inside my daughter's head that would help her talk, respond, look, socialize normally ,etc. A statistic that means possibly no ballet/gymnastics etc. - speech/occupational therapy instead. A statistic that means so much. One small word, one horrific heartache------

AUTISM

It's here. Taylor is exhibiting all the signs. I've had a weird feeling in my gut about this for a little while--a mother's feeling, a nurse's feeling---you know those feelings. It would explain so much. So many social difficulties. A reason for all the meltdowns in normal social situations when things get too "close." A reason for loss of words. A reason for virtually no speech. A reason for constant movement. A reason for hand flapping when uncomfortable around other kids. A reason for constant screaming on an airplane. A reason for her being so behind the other kids--kids younger than her. A reason for not wanting to be held close to your chest. Now talk about heartbreaking. Every selfish bone in my body is grieving over that one. A reason she goes to sleep without any protest. A reason she was totally miserable around all of her cousins and completely content as soon as I removed her from the situation. A reason it's always seemed "difficult" around here. A reason she won't pretend. A reason she doesn't "show" us anything. A reason she didn't point before age 2. A reason she won't look when I point something out to her. A reason she went to the other side of the room completely away from other kids at The Little Gym. A reason when you call her name she almost always won't look at you. A reason for so many things.

So, I have a call in to Early INtervention who is supposed to call me within 10 days to schedule an evaluation within 45 days. We also have an appointment at Children's Hospital to get her diagnosed. Wanna know the best part??? Insurance doesn't cover behavioral therapy. Early Intervention is free. Children's is not. Soooooo, any additional therapy or visits at Children's is out-of-pocket. First thing we are probably going to sell is Mark's car. Early intervention does provide therapy but odds are she might need more. We will find a way.

DEAR GOD PLEASE LET ME BE WRONG. PLEASE. I BEG OF YOU.

Please don't call me. I can't bear to talk about this right now. I just can't. I'm not sure how Mark feels but I can't talk on the phone about it yet. I'm just struggling to make it through the day and I know I have to get past this feeling to do the best for Taylor. This is so not about me but I feel so damn selfish right now. I'm so pissed off, sad, depressed, angry, hateful, heart-broken. You name it. We are all feeling it.

I know you are all saying "wait for a diagnosis." Well, it sure feels like autism lives here and it's real right now.

So, pray for us or do whatever it is you all choose to do. Hug your kids today and thank God for them.

5 more!

These layouts are all Mark's side of the family. We took a trip to Boston in May and Mark's parents visited us last month. If you want to know any of the products I used feel free to email me. There's too much to list.

I definitely enjoy scrapping the non-posed moments the most. More natural and just a better representation of everyday life.

Have a lot on my mind right now. Thanks for visiting.

another bubble layout

I have so many pictures of T with bubbles I just couldn't resist doing another. Fontwerks circle stamp, Creative Imaginations epoxy stickers, Fancy Pants "sweet" rub-on, etc. I used the Bo Bunny flexible ruler to make the wave design. Picked it up at the crop last weekend. I think Scrapbooker's Dream still has some in stock. She ships anywhere and charges actual shipping in case you are interested.

lots of new layouts comin' to ya

I went to a sixteen hour crop on Saturday. I'm still tired. :) I ended up finishing fourteen layouts and 2 cards. I'll share a few each day until they are all posted. Some I like - some are just "eh."

Gotta post and run. If I don't shower during T's nap I don't shower and that's just not good for anyone. Oh--before I forget--I posted some new links to the right for those of you who enjoy bloghopping. Lots of talent on that right-hand side. Purple Onion Designs is a retail site but even if you don't buy stamps you must check out the gallery she has posted. It's fantastic.