Sickies

It's the second week of school. The germs we avoided this summer have been brought home to roost. Just when I thought I couldn't blow my nose one more time....it moved to my chest. Lili is at the doctor today, I think hers settled into a sinus infection.

DP & Josie who both sleep like rocks have yet to catch it. Sleep must equal a stronger immune system. I must try that sometime.

Besides bringing us all a case of the sickies, school has been amazing. I was so worried after enrollment day but not anymore. Both teachers are just wonderful. Lili's teacher has even assigned her a one-on-one aid that will help her navigate hallways and stairs and help her eat in the lunchroom with the other kiddos. This is something that we were bracing for a fight for. In an overcrowded district without funds we never thought it would be this easy to get her help. Luckily she has a truly amazing teacher who sees her needs, fills them and then lets us know. Wow. Just like how it's supposed to work. Who woulda thought.

Having a full day of school has done wonders for Jo's outbursts. Her energy has been used up during the day so she comes home truly calm and enjoyable. She actually plays quietly and imaginatively by herself in the evenings when I'm cooking and getting things ready for the next day. No more pinball of pent up energy. My nerves are starting to unfrazzle. I see the need for organized sports in her future.


Choo Choo has been eating up all the mama attention. He's made a break through in speech since he's been home by himself. At 19 months he's finally figuring out that sounds get him things and he went Helen Keller style though the house labeling everything he could with his limited vocabulary of "buh, puh, tuh, kih, dah, & mah"
He's had speech, occupational & physical therapy since he was born. I would hate to imagine where he would be at this point without such intense early intervention. He's really doing well right now and becoming such a big boy.

Choo Choo's case through DFS has been delayed (no suprise there right?) though. Even though the TPR trial was ordered in February it isn't scheduled until January of 2009 now. Why do you ask? Because his SW is on medical leave and the DFS attorney is going on maternity leave so we won't do anything on his case until they are both back at the same time. which will be oh....6 months. We thought we might have a fall adoption....HA!

Everything happens for a reason right?

IEP and Special Needs

As a mama to kids with special needs I celebrate the little things. Sometimes we lose sight of the forest for all the trees though. This time it's a good thing.

Lili had her second IEP this past week. The were SHOCKED and AMAZED with her progress over the past year. They reminded us that at her last IEP she couldn't walk independently, she couldn't talk and had the skill level of a 1 1/2 year old. We've celebrated so many little breakthroughs I didn't even realize the huge jump that she has made.

Their new recommendation is an integrated classroom at a typical school. Yeah! I might have two girls in school this fall, I can't believe it.

Look at my big boy!

CJ is doing soooooo well. He is in the 75th percentile for height, which is totally a new experience for me since all my preemies have stayed tiny little things. My first boy is a bouncy baby boy in every sense of the word. He jumps, stands, falls, tries again, climbs, chases.....

Lili works within the limitations of her disability adapting the world to meet her needs....CJ works with and around his. He is such a fighter....legs don't want to bend? Must be time to start cruising on furniture. He just doesn't stop. He's growing and changing so quickly. Just look at my big boy!

Back to School Stuff

We're gearing up to get ready to go back to school around here. The girls don't start for another few weeks but I'm trying to get us back to more of a routine to make the transition easier. I made this picture schedule for the girls in the morning and it's working so well I'm going to make one for bedtime too.

If you have a school age child going back this year make sure you check out Flylady's Student journal to keep everything organized. I use her regular journal too.

I'm also trying to meal plan better (again...still?) and I've read some pretty neat ideas in this Back to School cookbook from my favorite recipe site Allrecipes.com

Got any back to school sites or tips to share?

Success!

Guess who is potty trained? Josie! I didn't want to post any earlier in case it was just a passing fad...but she's been diaperless for almost 4 days now. Do you know how happy I am? YEAAAHHHH

Learning more about Cerebral Palsy

With two CP special needs kiddos in the house we're super busy. Lili (and Jo) goes to her special preschool 4x a week. Both her and CJ get OT and PT 2x a week each. We're going to start going to a special CP clinic at the local children's hospital 1x a month. We'll see a lot of specialists all in one afternoon. I'm learning more and more about CP.

In the United States today, more people have cerebral palsy than any other developmental disability, including Down syndrome, epilepsy, and autism. Although children with very mild cerebral palsy occasionally recover by the time they are school-aged, cerebral palsy is usually a lifelong disability. In most cases, the movement and other problems associated with cerebral palsy affect what a child is able to learn and do to varying degrees throughout their life.

CJ has Spastic Cerebral Palsy (stiff and difficult movement)
Lili has Ataxic Cerebral Palsy (disturbed sense of balance and depth perception)

Both of their cerebral palsy may be the result of an injury to their brain before, during, or after birth. In Lili's case, as a very premature baby, bleeding into the brain (intraventricular hemorrhage) caused extensive damage. I think in CJ's case nuerological damage was caused by toxic injuries, or poisoning, from alcohol or drugs used by the mother.

School stuff

Lili will be continuing to attend her special language preschool during the summer session and the first day is Wednesday. We've decided (budget be damned) to send Josie too for this semester. She is always so excited when we drop Lili off at school and I'm hoping she'll still be excited Wednesday.

This past weekend we went to a kids birthday party that was held at one of those big-inflatable-bouncy-things places. We almost had Lili stay home with DP because we figured she would just throw a fit and get overwhelmed. Boy did we call that wrong. Lili had an all out, no fear, more-more-more, blast and a half. Josie on the other hand was scared of everything and didn't participate at all (well except for blowing out the birthday girls candles mid-song) and was uncharacteristically shy. I'm still searching their bedroom for the alien pods because these are not my children. Who came down and switched personalities on me? LOL

CJ had his first IFSP (like an IEP but for kids under 3) meeting today. With his CP diagnosis he qualifies for any services he needs. He already has PT once a week and now we'll be adding OT once a week as well. His SW attended the meeting and told us that mom relapsed this week. More self help meetings were added to her goal plan. *sigh* I don't know if she's gonna make it. This isn't a good sign. Sorry baby boy.

Hello RAD where ya been?

Sometimes I can live my life like a normal mom. I complain that the laundry and dishes never end, I fret over birthday parties and I talk a little too much about poop and pee. But then, some days I am reminded that our lives will never be "normal".

After a pretty uneventful holiday weekend Lili had a raging meltdown tonight. Lili is a sweet little girl who is mentally about half her chronological age. She has mild Cerebral Palsy and has only been walking unsupported for about 6 months. She has a diagnosis of RAD but we have worked through some pretty rough attachment issues. I say worked through.....but it's never over.

Tonight I cleaned up feces from the floors, walls and bedroom door. She took all the clothes out of her closet that she could reach and smeared them with poo. She was unconsolable. It took forever to calm her down. After she was cleaned up I laid down with her and told her over and over again that everything was alright, she could go to sleep now.

But really I have no idea if everything is alright. I don't even know what set her off.

The Rollercoaster Ride

I haven't done an update about CJ in a while because, well everything changes daily. This roller coaster ride has so many ups and downs. I've learned not to hold my breath....but I still worry more than I should.

CJ's siblings were almost put into care but great-grandma stepped up and took them back. But this past week they were with mom at a visit again.

Parents were supposed to be starting weekly unsupervised visits. They didn't do what they needed to at the last minute. They have lost momentum and are not making much progress in their case plan.

DFS proved that mom "ghosted" her drug test. She took a substance that makes your test come back clean. They can't do anything about it but note it in the report. They can't screen any future tests to see if she's still doing this.

Mom is beginning to give up hope and asked that her mother be given custody. Grandma wants mom to "clean up her own mess for once". I get that she's not trying to enable her daughter any more, it scares me that he could spend years bonding with us and then she'll decide to step up.

Sometimes I'm really glad that we only get calls for babies. When we were first approved as foster parents I thought that the greatest need would be for older sibling groups. We are open to kids up to 8 years old, 2-3 siblings. Because I can be home with the kids we only get calls for preemie and special needs infants. The sleep deprivation gets to you ....but I don't know how I would protect/buffer an older kiddo from all these worries.

CJ has been seeing a barrage of specialist to rule out a prenatal stroke or brain bleed.
Today the letters were finally put into his chart.

C.P.

Cerebral Palsy

A Call & IEP's

Another call for a placement. Sometimes it just breaks my heart that we are needed so badly. This call was for the little one mentioned in this post back in mid February. He needs to be close to the children's hospital as he now waits for a bone marrow transplant. The call was just a message on the answering machine so we will get more information tomorrow and make a decision. It seems like too much to take on right now but we'll wait for more info before we say no to him. The fact that she's calling us means that they are having problems finding a place for him to stay.

Today we received a copy of Lili's IEP(Individualized Education Program) in the mail. In evaluating children with special needs there are a number of areas of developmental delays/disabilities that qualify SN kids for an IEP. Seven areas in fact. Lili qualified in 6 of the 7 areas:
1. Vision
2. Health/Motor
3. Speech/Language
4. Social/Emotional/Behavioral
5. Cognitive/Adaptive Behavior
6. Academic/Pre-academic Achievement

The only area she did not needs services/adaptations was Hearing. Is this a good time to mention that we're going back to the ENT to get new ear tubes in and see if all these ear infections has caused any permanent hearing impairments? Oy Vey.

....and some good news for a change.... Lili's IEP meeting in late January was the last time her Receptive and Expressive language were tested. At that time she scored 19 months in Receptive and 18 months in Expressive. She was tested again today at the language based preschool she has been attending since then and her scores were at 36 and 30 months. Those are HUGE gains in just 2 short months. Yeah Lili! Not so long ago I was dreading what starting preschool would mean. Now I can't be happier with her transition and her improvement. Yeah again!

Can I just whine for sec?

Lili has come soooo far. I know that. Developmentally, socially and attachment-wise. She really has made great strides.

But why does she still have a nervous breakdown when we go into a store? Not a fit or a tantrum....but a complete meltdown. Hitting me, sobbing uncontrollably, wailing so loud everyone turns around to see if I'm killing my child. Why? I ask her what she wants.....Do you want to sit in the cart? Do you want to walk? I once had to sit on the floor in an aisle at Target rocking her like a baby and singing lullabies for 15-20 minutes before I could get her calmed down enough to even leave. I would gladly bribe her with sweets and toys if it would make a difference.

Sensory overload? Attachment issues? Trying to drain yo-mama syndrome?

Being a mom to a Special Needs child

Just for background... I knew Lili was my daughter from the moment we read about her on the waiting child list. Her specific areas of delay and her medical needs just happened to be everything we had experience in. We were a great resource to a child with great needs. She was my daughter, she was meant to be here. That being said.....

Being a mom to a special needs child is often quite draining and exhausting. Yesterday was just such a day.

Lili, who is 6 weeks away from her 3rd birthday, just entered the Terrible Two's in full force. She is globally developmentally delayed and socially/emotionally much younger than her chronological age. Added to that, she has Reactive Attachment Disorder (RAD) and Sensory Integration Disfunction(SID). I know more acronyms than I care to.....

Yesterday was more RAD than TT as she raged more than tantrumed. She hit her speech therapist and refused to fully participate in her physical therapy. She was so angry, angry that she had to take a nap, angry that I expected her NOT to tear up her books, angry that she wasn't allowed to hit. I'm so worn out and it's about to get worse.

Lili will be starting a special theraputic preschool in about three weeks. For a child that has lost so many caregivers I'm afraid that she will think it's happening again. I'm afraid that all our work getting her to the anxious stage of attachment will be lost...and that the raging and defiance will begin in full force. Kids who lose so much, expect loss and grief. It's what they know.

I'm so not ready for this. I'm dreading it.