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.