DENIED …

Today I sat through yet another IEP meeting for yet another one of my kids. We did the full out thing, they didn’t tell me anything I didn’t already expect walking into the meeting. 

They indicated that Lil Girl has a significant difference between her scores in the area of attention and memory from those in logic and reasoning. Reasoning and logic are her strengths. Due to her strengths in this area she scored high in cognitive, which denied her services in this area. 

Then they told me all about her personal – social behaviors. Here they spoke of how she is affectionate with family members and other adults. They did not show that it took her about 10 – 15 minutes to warm up to the evaluator that was playing with her. They talked about how she will sometimes allow adults to join her activities. They acknowledge that she does not like to help adults in the house, and that she is aware of other children, but does not interact directly with them. They say she can say her first and last name, but that she not respond correctly called by her name. Now here is the fun part because up until now it’s all clinical data … Lil girl LOVES playing in the kitchen.  She will give bowls of food and feed her babies. But the data is a little well … incorrect. They say she will initiate socialization with her peers. THAT IS BULLSHIT! She does not care about the kids in her class. She is happier playing by herself and gets very irritable when other children mess up her play. I CALL BULLSHIT! Oh and she is aware of gender differences, because you know boys have a penis. Yup she went there. God do I love the things that come out of my kiddo’s mouths. Again they state that there is a significant difference between her score of self-concept and that of peer social skill development. 

 

Her adaptive skills scored low as she still needs assistance with many tasks a 3 year old should be able to do, like undress themselves and always use utensils when eating, petting animals gently and not eloping. 

Her communication scored high because she uses gestures to get her point across and understand a lot of what is being said to her.  In other words, she makes herself and her needs known one way or the other. Her speech however is completely unintelligible. 

So what does all of this mean? Simply stated … her attention and memory issues are not a problem because her logic and reasoning skills are so high. However there has been a large decline in those since her Early Steps screening (about 15-20 points). Her adaptive skills are 5 points too high and her social skills are 2 points to high. These two areas being too high by a few points have denied her services for developmental delay. They have indicated that she has a severe phonological impairment that impacts her ability to make her needs and wants known. So for now she is being placed in a 2 1/2 a day program that will be language and speech intensive. 

While I am happy that she is getting intensive speech from the district, I feel lost because she had a really good testing day. It was one great day out of so many bad days that we go through. Now it is time to start working her therapy myself, like I had to do for me and for my son. While she scored anywhere form 2-5 points too high for the additional services, I will not let my child fall victim to a system that is too overworked and too finically stressed. My daughter will not fall through the cracks. She will succeed in her own way at her own pace. 

Advertisements

This is ours

“Lil Girl” they say as they call her back to the room.

I’ve been here before, I know how this goes

“Mom what concerns do you have?”

God I wish I could say none and why are we here

“She doesn’t speak much and when she does you really can’t understand her unless you are fluent in Lil Girl”

That’s right, hide your fears behind humor. You are so good at it.

“We are going to look at some key areas of development, language, and articulation”

“Lil girl how old are you?”

Please respond. Say anything, even if it isn’t your age. Please don’t sit there and smile at them

“Lil girl are you 1? ::shakes head yes and smiles:: “are you two?” ::shakes head yes and smiles:: “are you five?” ::shakes head yes and smiles::

YOU ARE THREE!!! DAMN IT WHY CAN’T YOU SAY YOU ARE THREE????

They keep making their notes, they keep trying to get something from her.

“Lil girl what is this?::  points to a picture of a spoon. “oo” “can you say spoon?” “oo”

“what is this?” ::picture of an umbrella:: “lella” “What do you do with the UMBRELLA?” ::flapping:: silence:: the question is repeated “ol tot site”  ::still flapping::

OH MY GOD!!! She just answered in a sentence. She spoke in a sentence. I’m shocked. 

“Mommy, we need her to see the developmental psychologist and have a more in depth evaluation on her language and speech”

DAMN IT!!! I wanted to be imagining all of this. I wanted to be seeing things that weren’t there. FUCK!

“We have some forms for you and the preschool to fill out.” They are talking, but I can’t hear the words. They don’t make sense anymore.

Seriously … again?!? I DON’T WANT THIS AGAIN. I CAN’T DO THIS AGAIN

The teacher forms aren’t much better. They were given back today.

“Lil girl doesn’t talk much. She doesn’t like to play with anyone and she gets upset if other children come to her”

Don’t cry mom, hold it together. You are stronger than this. Just keep reading

“She understands simple directions, like put it here, but most of the time when you ask her a question she just smiles”

Screw it! I can’t be strong any longer. I’m done, finished, I’m at my limit.  I let the tears roll down my face in silence. I cry because I was right all along. I know this is not the end, rather the beginning. I know that she follows in the footsteps of mommy and brother, and most likely daddy. I know that no matter what this challenging life throws at us, THIS JOURNEY IS OURS AND IT WILL NOT BREAK US!

Changes are hard

Sunday night the kids and I talked about the changes that were going to come our way on Monday.

Mommy starts school again on Monday, just like you do. We will wake up early. We will go to school everyday. Mommy will pick you up from school after snack. Mommy will be home every night.

We have been having this conversation and this social story since winter break started in December. The only thing that changed is the start day.  Monday came and we woke up early. Lil man and Lil girl both made it out of the house on time without meltdowns! (win for me)

As we get into the car and are driving to school lil man tells me “It’s sleep time, sun sleep.”  Lil girl puts her two cents in “sun sleep.” Yes kiddos it is dark out. I’m sorry that you are having to be to school at 6:30 in the morning before the sun has even come up in the morning.  As we finish our short drive to the preschool and get out the car lil girl is excited to be back. Lil man knows that it is his job to press the smiley face so I can sign him in.

But now comes the change … We don’t drop off in the cafeteria for breakfast, it’s still too early for that. We don’t go to lil man’s class because his teacher isn’t there yet. He and his sister both go to the two year old room where they will wait for their teachers to come in for the day.

Where was mommy’s head? I didn’t think to prep them for this. How will they handle this change?

Lil girl was great about it. It was her class and her teacher so it was normal. Lil man threw himself on the ground crying as I tried to leave. He stood up as I walked out the door and ran after me.  Change is hard! 

At the end of the day Daddy and I pick up the kids from school. They tell us that lil girl will be transitioned into the three year old classroom. That it will be done in a single day.

Mommy isn’t ready for this! She isn’t able to fully communicate. She isn’t developmentally where the other three year olds are. She is below where most two year olds are. 

She made it into the three year old room with no issues. I watched her today when I picked her up. She loves the room and the new toys. She loves to sit by the other children doing her own thing. But she is there. She was ready even though I wasn’t.

Change is hard. It’s hard for a mom to let go and watch her children go into a new situation when you aren’t sure how they will do. It’s hard to accept that children change and grow. But change also teaches you things. This change taught me that lil girl loves the babies in the classroom and all the kitchen stuff to play with. She loves that she can do her own thing and still not be worried about the others in the classroom.

Lil girl taught me that while I might not be ready for it, she was and she is happy there. Change is hard, but needed if a child will progress to the next step. Whatever that may be for that child.

Silver Lining

Education is a fundamental right for all individuals.  In Florida each child at the age of 4 is entitled to free VPK. This provides students with 3 hours a day during the school year of pre-k free of charge to families. Children are provided with instruction through approved providers, typically preschools/daycare.

Buggie is eligible for VPK this year. He also has a diagnosis of PDD-NOS, in other words he is on the spectrum. His IEP, Individual Education Plan, does NOT have accommodations for autism. This is a battle I have been fighting with the school board since our IEP meeting last year. He was one of many who have been lost in the system. This will not be the case this year when we return to our IEP meeting in September.

Buggie is “High Functioning.” He has partial eye contact, he is verbal but still has communication issues, and academically he is behind. We have worked countless hours with therapists and in home programs to help his functional skills develop. In the middle of this somehow he did not grasp the educational concepts that typically developing children have by this age. This is okay, we take it step by step.

Based on his level of functional skills, my Husband and I have made the decision to place him in a typical preschool for VPK in hopes to keep him with his typical developing peers. This decision was not made lightly, rather it was done after countless hours of observation and conversation. Finally by June of this year the decision was made. Now it was time to find a preschool who would accept him.

This seems like an easy task, yet it was not! My first thought was this will be easy, I will simply go back to the preschool he was in prior to diagnosis. He was last there when he was a year old, his oldest sister went to VPK there two years ago. This seemed like a no brainer for me. I went in, talked to the teacher and was told “We are not trained to handle his needs.” Well damn, I struck out. This was not a good start.  After I left the school, I called an additional 10 schools. Each one gave me the same answer, “I’m sorry we are not trained to handle his needs.”  This sounds so pretty when it is said this way. Yet I got the feeling that every school I contacted would say the same thing. These are the times I wish I was ignorant to the way the educational system works.

Family Central, an organization here in Florida, and the Early Learning coalition provide the VPK program. On their website they have information about inclusion in the VPK program and even better they provide FREE training to childcare centers on how to make sure their programs are set up for inclusion.  At this point I was mad. I was seeing red and was ready to report each of these schools for discrimination.  I couldn’t even find the “nice words” I tell my children to use. I wanted to be a raging bitch and make everyone understand that my son is amazing and they need to include him.

Today I called two different schools, both welcomed me for a tour. I went to the first school who said they would be able to accommodate my son’s needs. We walked in and lil man would not take his headphones off. The classrooms were cluttered, nothing was at eye level for the children and it was LOUD. I was having problems with the environment. Both lil man and lil girl shied away from the staff and were not very open to the idea. They were ready to get out before I could even finish the conversation with the school’s director. THIS WAS NOT THE SCHOOL.  While they said they could accommodate his needs and his therapist would be able to come to the school, there was little about this school that was sensory friendly.

We left, I felt defeated. I was at a loss. We  entered the second school shortly after. I must admit, I did not have high hopes for this school. No other school would take him and the only other option was too much of a sensory overload.  We toured the school were shown each classroom and they kids were allowed to explore the classes. They could touch the toys, meet the teachers, and even interact with the other kids. (Nope there was no interacting with other kids, but it was nice that it was an option.)  As the tour went on things kept getting better. Each classroom is equipped with a “chill zone” where children can go to decompress. There are visuals of emotions, calm down methods, and get this SESNORY items.  So at this point I am wondering if I have died and gone to preschool dream land.  We continue with the tour, we talk about logical consequences and then I am surprised with the training that their staff is undergoing. It is a training called PBS, Positive Behavior Supports. Really a preschool working with behavior supports. I’m in shock.

After the tour is over we talk about Buggies current needs and what will be needed for him to succeed. They are cool with this, then I meet the director/owner. Everything makes sense following this meeting. She was an elementary school teacher who went on to get her masters in Special Education. Now it all makes sense to me, this school is the perfect choice for my two younger ones. Not only am I happy with the school and the staff, but lil man is happy with the choice as well.

Maybe all of the “No’s” we had to hear were put in our path so that we could get to this school. I believe everything happens for a reason and that there is always a plan in life, even when it hasn’t been reviled to us yet. It is faith and trust that will lead me to the right decisions for my children.