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Wednesday, June 1, 2016

My Little Cricket’s Delay: Making Such Great Progress

First off we are going to be getting some hard data soon. Apparently at the six month mark we are able to retest my Little Cricket and monitor how far he has come. That retesting will be administered by the developmental pediatrician at the end of June, the CAN Clinic, and by the psychologist who diagnosed my son through the regional center, both the later will be done in August. In the mean time I go with what I see and what our specialists are saying, that our plan is working. That my Little Cricket is gaining skills and making huge leaps toward our combined goals. The constant worry is something that I just live with now. Some days my doubts are soft whispers, and other days the doubts are screaming a migraine inducing cadence in my head.

I have a good system. I have a solid team. Things with the therapists are rocking and I can now relax my razor focus slightly to work on other things. And by other things I mean other things that support that system of helping my son.

The insurance piece is moving so incredibly slow, and is so incredibly difficult I want to scream. Everything we are doing is private pay, which will eventually, hopefully be reimbursed at least partially by insurance. I decided to go with vendors who were private pay after I exhausted interviewing a ton of therapists that my insurance does cover. THEY SUCKED. Every single one was horrible in one way or another. And you know what my son deserves the best. HE DESERVES MORE THAN WHAT MY INSURANCE PRE-APPROVES. So I found the best, and we private pay. We haven’t seen a dime yet. Not in four months. To say that it is stressful is total crap. It is a huge bus placed on top of the mountain, placed on top of the universe I feel like I am holding while I fight for my son. At least now the major fights with insurance have been won and I just need to poke them to make sure that the things we set in place are still on track. Hypothetically in the next two to three weeks I should have all our vendors approved and the checks should start coming in. Up until now I have had the usual contact with insurance any healthy woman has, no contact and no relationship. Going through this war with insurance has sapped my already exhausted self even further. It is criminal but I WILL win.

Our IEP is moving along. We agreed that the school district didn’t have an appropriate placement for my son so they offered a non-public special ED placement. The school piece is something that I am still having such a hard time with. Everyone agrees that putting my Little Cricket in a preschool program will benefit him and allow him to gain skills, in particular build on his language and social skills. The issue I have that these special programs for autistic children have mandatory hours of 8-2 Monday through Friday. Those programs also include time for speech and OT. I don’t get to go to school with my son nor do I get to sit in on all OT and Speech sessions. My son just turned 3, to be in a program away from me 30 hours a week, it is just completely unacceptable to me. A typical preschool would be ideal, but I am also worried that putting him in a typical program too soon might backfire. After all the two programs I was trying were horrible failures. I hear MANY stories where kids are put in typical schools and they spent time in the corner with their aid not participating meaningfully in the program. However a typical environment I could do 2-3 hours a few days a week. A typical program will allow my son to have typical peers and models. A special school will have a better teacher to child ratio. A special program will have people who better understand children with delays and how to help my son grow. Torn, I am so torn. And so I put a few hours a week into trying to figure it out. I call schools, I tour schools, and hope that something comes up that will be perfect.

As to progress now here it goes:

060116_cricketProgress00

PLAY -
There are 16 levels of play. My Little Cricket started at Combination > Conventional (combining like things together) which is level 8. Four months later he has now moved up 6 levels to just emerging into level 14 which is Symbolic > Doll as agent (giving doll life, walk doll to house, use doll hand to open door, doll talking to each other). He has made HUGE gains in his play levels and as he becomes more comfortable with higher play levels he can engage more with other children.

060116_cricketProgress01

060116_cricketProgress02

LANGUAGE -
My Little Cricket started speech therapy in mid-September 2015 with 29 words but with only 5 of those words being used functionally and appropriately in a day. He didn’t know how to mimic hence teaching him to speak was incredibly difficult. His new word list includes 125 words that he uses functionally and appropriately in a day. My Little Cricket is now consistently adding 2-5 new words a week. And he is just starting to combine 2 and 3 word sentences together. There is still a good bit of mimicking but for where he is in his developmental speech it is still currently appropriate. As an added gain my Little Crickets gesturing, sharing and pointing has also increased so much. He is now waving goodbye, gesturing for someone to follow, pointing at the snack or toy he wants, etc.

060116_cricketProgress03

EYE CONTACT AND FOLLOWING DIRECTIONS
My Little Cricket’s eye contact and his response to his name have both increased exponentially. His eye contact has gone from 20% to 80%. His response to his name has also gone from 20% to 80%. And my Little Cricket’s ability to follow routine instructions has gotten so much better. We have been working hard at getting him to follow novel directions with gestures, and you are improving daily.

I really love an emotion based connection for therapy. I would rather my son connect with people, to REALLY socially connect with them, than anything else. Dr. Greenspan’s stages of Social Emotional Development are a good indicator of where a child falls in their emotional journey. My Little Cricket has skills in the first three stages, and is emerging into the fourth and fifth stage.

    SOCIAL EMOTIONAL DEVELOPMENT

Stage 1: Self-Regulation & Interest in the World
In the first four months, infants are learning about their world through their senses. Some babies really enjoy noise and excitement and some babies are more sensitive. Some babies like to be moved quickly and held firmly while others prefer slow movements and very gentle touches. Some babies easily find ways to sooth themselves like mouthing a toy or fingers or cuddling with a favorite blanket or stuffed animal.
What can you do?
*Be sensitive to how your baby acts toward different stimuli and adjust temperature, noise level, movement, light and touch to make your baby feel most at ease.
*Help your baby find ways to comfort and calm himself/herself. Provide safe toys for mouthing, sucking and cuddling, and talk or sing to your baby in a comforting tone.

Stage 2: Intimacy & Engagement (2-4 months)
Around four months old, infants begin to learn how to build the type of relationships with people that we relate to as adults. Some babies are ready and willing to embrace and engage with the people around them and others need more wooing in order to fall in love with other humans.
What can you do?
*Hold your baby close and affectionately. Remember that the type of hugs you engage in though depend on how sensitive your baby is to touch.
*Use bright facial expressions. Again, some babies will need more goofy and animated expressions and some will respond better to warm, sweet smiles.

Stage 3: Two-Way Communication (3-9 months)
Around eight months old, infants begin to pay attention to whether or not their communication is being received. Is the caregiver paying attention to and responding to the infant's messages?
What can you do?
*Pay close attention to the different ways your baby attempts to communicate with you and respond accordingly. Does he/she turn her head away, push or pull you away or close, make a frowning face or smiling face or grunt or giggle to indicate pleasure or displeasure?
*The more aware of your baby's cues you become, the better able you are to respond appropriately and to get to know his/her likes and dislikes.

Stage 4: Complex Communication (9-18 months)
From 10- to 18-months, toddlers are starting to learn about themselves as individuals. They mimic the behavior of others and also begin to engage in pretend play.
What can you do?
*Pay attention to the games your child likes to play. Does he/she like to imitate you, play peek-a-boo, play chase, try to get you to follow her/his lead or command or to make you laugh?
*Recognize your toddler's new abilities and play and pretend along with him/her.

Stage 5: Emotional Ideas (18-24 months)
Around 18- to 24-months-old, toddlers learn to recognize and express their feelings. They can explore their own feelings and the feelings and emotions of others through a lot of pretend play.
What can you do?
*Give your child dress-up clothes, dolls, animals, building blocks, puppets, and household props such as kitchen sets. All of these items will help him/her engage in make-believe play and act out her/his feelings.
*Acknowledge your child's emotions and help him/her describe and label the feelings through appropriate words and gestures.

Stage 6: Emotional & Logical Thinking (2-3 years old)
Between two and three years old, they begin to explore the difference between pretend and reality. Children of this age can begin to control their own behavior and to understand and adhere to limitations and rules.
What can you do?
*Continue to engage in pretend play with your child and talk about why it is fun to pretend but why it is not always safe or possible to do those same things in real life
*Help your child to recognize what is real and what is pretend. He/she may wish to eat brownies for breakfast every day but in reality knows that this is not a choice you have given because you said it won't keep her healthy.
*Introduce some limits in daily life in order to help your child stay safe and treat others kindly, but don't forget to acknowledge your child's feelings about these limits.

Source Here
http://www.troyrecord.com/article/TR/20110124/NEWS/301249988


ABA
Our new ABA team is amazing. They function under a broad umbrella of treatment and use a play based model for my son. Although I have so many things that I don’t like about some ABA therapy one thing that really appeals to me about ABA is the documentation that they use and the data that they collect. We have clearer goals than I do with the rest of my son’s therapy team. I am excited to see how he progresses.

060116_cricketProgress04

OCCUPATIONAL THERAPY
Our OT has been going fantastically. They are working loosely under the Denver model. The first stage (as in the first 4 months) they have been working on his ability to follow directions and his emotional connection/eye contact. Now that he has progressed so well with those two skills they are now able to focus now on building up the strength in his body. My Little Cricket has low tone which creates problems in the way he moves and how he holds his body. By working on his strength will help him in so many ways across the board and I am excited to see where he is in the next few months.


WHERE I AM NOW
In the beginning the diagnosis was terrifying. I knew nothing about Autsim. NOTHING more than the name. The powerlessness of the few weeks following was horrible. I didn’t know where to start. I didn’t know what I was reading on the internet. I looked for answers. I learned the terminology. I made appointments, we got assessments, I talked and asked and listened and weighed opinions. I decided on a treatment plan and then I learned all I could from the therapists so we could be as consistent in treatment as we were at home. I continue to do research online, reach out to any specialists I run across, talk to other parents and I read any books recommended by our team. I have been a laser, focusing so intently on my Little Cricket, on getting him the best possible chance that I could at successfully working on his delays. Months and months of constant intense focus has left me oh so tired. What I am realizing is that I have to let go of the gas, just a little, just enough so I can focus on everything else in our life that I have been ignoring including myself.

I need to stay strong for my son, for my daughter, for my husband. My family needs me, or this whole ship is going to sink.

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