The next chapter.

So, not gonna lie, this is a hard moment for me. But on the flip side, it's a moment that I am so thankful for. Yesterday Claire and I went to a meeting with the Clark County School District. Claire had been evaluated by a team of people in October.. This team came together, discussed Claire's "case" and gave the following recommendations:
1. Claire does "qualify for early childhood special education services in the area of Developmental Delay"
2. A structured and consistent educational program within a school classroom should be considered to address Claire's delays. Services should be provided within the least restrictive environment that meets Claire's needs.
3. Consultation with the diagnostics should be made available to Claire's caregivers at the multidisciplinary team meeting
4. National Association of School Psychologists handout was given to Claire's parents to address temper tantrums.

"A child with developmental delay means that a child is under the age of 6. The child demonstrates a delay of at least two standard deviations, one or at least one standard deviation in two or more, of the following areas: receptive and expressive language, cognitive abilities, gross or fine motor skills, self-help, or social or emotional condition. It is determined that the child needs special education services. Claire demonstrated delays in each of the areas, with the exception of gross motor function.

A child may no longer be identified with a developmental delay if the child maintains appropriate developmental functioning in all developmental areas for 6 months of more and the eligibility team concludes that special education services are no longer necessary."

This means, she will be go to the local elementary school, 4 days a week, 2 1/2 hours a day, and will be in the early childhood development special education program. This is something that will be assessed each year to determine if she needs it or not and what we want out of it. The team also created an "Individualized Educational Program" or (IEP) for Claire. This is a plan stating where she is at currently in all areas, and what the goals are for a semester, every 6 months, and yearly.

She is eligible to start school on her 3rd birthday. Her birthday is December 21, which is during the Christmas break, so she will start in January as soon as school starts back up.


I will share where she is at, according to the evaluation done in October 2014 when she was 34 months old. This is called the "Multidisciplinary Team Report." (I know using months to determine age is annoying after 2 years old but this is just how they have it written out)

Language - Receptive Language - Claire is at a 11 month level
                    Expressive Language - Claire is at a 9 month level
.....Typing that out makes my heart hurt.
Voice: Vocal pitch, quality, and loudness levels appear appropriate for age and gender.
Fluency: No evidence of atypical disfluencies is reported.

Cognitive - Delayed
Communication: no score
Daily Living Skills: Moderately Low
Socialization: Moderately Low
Motor Skills: Moderately Low
Adaptive Behavior Composite: no score

Then I completed the "Parent Scales (PRS) of the Behavior Assessment System for Children, Second Edition" The scores comprise the Behavioral Symptoms Index and this index reflects the overall level of problem behavior.
Hyperactivity: average
Aggression: average
Anxiety: low
Depression: at-risk
Somatization: low
Atypicality: at-risk
Withdrawal: average
Attention Problems: average
Adaptability: average
Social Skills: clinically significant
Activities of Daily Living: at-risk
Functional Communication: at-risk
Externalizing Composite: average
Internalizing Composite: average
Behavioral Symptoms Index: at-risk
Adaptive Skills: at-risk


The options of placement are below:
1. Regular Class with supplementary aids and services (no removal)
2. Regular Class and special education class (e.g. resources) combination
3. Self contained program
4.Special School
5. Residential
6. Hospital
7. Home

The team and I agree and think Claire would do best in the "Self Contained Program" where she will be in the Special Education Class with a max of 12 students. There will be the special education teacher and assistant in the classroom. It will be a mix of kids who are all there for some reason. (Wheelchair bound, hearing problems, sensory issues, developmental delay, autism etc)

Speech Pathologist
She will have a speech pathologist work with her one on one twice a week (40 min a week/160 min a month) She will also be getting all of this help with her teachers daily. But it is more one on one with the speech pathologist who will also direct teachers on specific things they need to be doing with her.


Here is some key points written on her Individualized Educational Program (IEP) 

STATEMENT OF STUDENT STRENGTHS:
Claire has made improvement with intervention. (speech therapy) She has age appropriate gross motor skills. Claire is engaging in more pretend play. She will attempt to imitate words at time.

STATEMENT OF PARENT EDUCATIONAL CONCERNS
Parent is concerned about Claire communicating effectively with others. Parent is also concerned with safety. (Claire learning to be more aware of common dangers - she wanders off.) Maintaining control of seizures. Compliance.


. . . . . .


MEASURABLE ANNUAL GOALS
1. By annual review, in a classroom setting, Claire will INCREASE RECEPTIVE LANGUAGE SKILLS and EXPRESSIVE LANGUAGE SKILLS, achieving a criteria of 80% as measured by observation and documentation as implemented by Special Education Teacher and supported by Speech/Language Pathologist.

2. By annual review, Claire will demonstrate improved PRE-ACADEMIC SKILLS and demonstrate INDEPENDENT SELF HELP SKILLS,  achieving a criteria of 80% as measure by observation and documentation as implemented by Special Education Staff.

3. By annual review, Claire will demonstrate AGE LEVEL FINE MOTOR SKILLS and SOCIAL INTERACTIONS WITH A VARIETY OF PEERS/ADULTS, achieving a criteria of 80% as measure by observation and documentation as implemented by Special Education Staff.

4. By annual review, Claire will demonstrate APPROPRIATE CLASSROOM BEHAVIORS achieving a criteria of 80% as measure by observation and documentation as implemented by Special Education Staff.


BENCHMARK OR SHORT-TERM OBJECTIVES 
(These are all at different times, for example "by the end of the third quarter" or "by end of second quarter") I am just going to list them all.

Follow one step verbal directions
Identify 6+ body parts
Identify actions (eat, sleep, etc)
Identify 2-+ objects (ball, baby, etc)
Imitate vocal play, sounds and words
Label 20+ Classroom objects
Use words to request classroom objects and activities
Use 2-3 word phrases to request and comment
Identify a variety of classroom common objects/units
Identify circle, square and triangle
Identify ref, yellow and blue
Touch 4-6 body parts on self/others/pictures
Indicate the need to use the toilet
Push pants down/pull pants up for toileting
Remove/put on coat/backpack
Toilet independently
Complete a variety of bilateral hand activities increasing in complexity (pop beads, peg boards, stringing beads, lacing cards, blocks, etc)
Complete a variety of non-inset puzzles of 3-5 pieces
Demonstrate a functional grasp when using crayons/pencils
Open/Close a variety of containers to access educational materials
Allow others to play with the same toy/objects
Engage in imaginary play
Participate in basic turn taking activities
Play simple interaction games for 3 or more exchanges
Attend to teacher directed activities
Complete a variety of teacher directed tasks/activities
participate in a variety of group activities
Transition from preferred activity to a teacher directed activity appropriately


She will get direct help in these 5 areas (In order of priority. 1 & 2 tying for 1st)
1. Communication
2. Behavioral/Social Skills
3. Cognitive/Readiness
4. Self Help
5. Fine Motor Skills.

The staff will be aware of her seizures and know how to handle them and what to look for etc.






My Prayer Request:

Praise God for all of the people who have donated to her gofundme account which has allowed us to completely pay off a TON of her medical bills. Praise God that she is progressing, and that we have had access to all of the wonderful therapists and opportunities for preschool for Claire. Praise God that she has been seizure free for most of the year, which has allowed her brain to be able to take in information, process it and develop SOME language. Praise God that she is one happy girl!!!
Please pray for peace for Austin and I. Pray that we would see God's hand on everything going forward and learn and fully understand that HE is the only one in control. Help us to give up the control and lean 100% on God for all of our needs- emotionally, physically, spiritually, and financially.  Pray that Claire would adjust and LOVE school -that she would progress and learn lots and be caught up before she starts Kindergarten. Pray for Claire's new teachers to SEE Claire, to understand her, to make her feel known. Pray that when we get her EEG done on December 17, that it would be a GREAT test, and that whatever IS going on in her brain, that it would be obvious to the doctor. We see her neurologist, Dr, Wilfong, on December 19. Pray for clear answers and that he would be able to tell if she is having seizures that I am not aware of. (I am worried this is the case because seizures can be something like blinking eyes or staring off into space for a second and Claire has started to bite her fingers again which is something she only did during a seizure)  Pray that when I tell him things I believe are side effects of the seizure medication, that he would make a smart decision on the dosage we give her, or the decision to change medication, or even wean her off the medication. I just want it to be the best decision for Claire. . Pray for our first appointment with the geneticist on Dec 18. and that they would also have some clear answers from her Whole Exome Sequencing Genetic test done last year. Pray for our trip back to Texas to be pain-free, smooth flight, and that it is filled with quality time with family and friends.

Be still and know that I am God. Psalm 46:10

I have not posted in a while. Claire has been doing REALLY well. She is starting to say new words, and imitate words we ask her to say. She is still very behind in speech though. She still sees Joanne once a week, and now she sees Wendy (who does JUST speech) every other week. Both ladies are angels. They are a perfect fit for our family and for Claire. I am so so thankful that God chose them to be her therapists!

Joanne is such an advocate for Claire and helps me understand processes/paperwork/what I need to do/who to call etc. SHE IS A GODSEND.

Claire was evaluated last month to be in the Special Education Program at the elementary school (but it would be PRESCHOOL) They would work specifically on what Claire needs. on what she is behind in. (We do not know if they think she needs to be in the program yet) My assumption after leaving evaluation is that she will need (obviously) lots of speech help, but the nurse told me from what she was seeing, Claire has a very strong refusal behavior. (I already knew this but chalked it up to her being 2 years old. But then when the nurse mentioned it, it dawned on me that she is VERY independent and ONLY does things on HER terms)

I think the evaluation went well (meaning, I think they got a good picture of how Claire behaves and what she can and cannot do) Some kids may cry the whole evaluation and that may not be a normal behavior and so then they would have to retest. So I am glad we were not asked to re-test.

We will find out on December 2 what the results are. An entire team of people are getting together to come up with a plan for Claire. (IF they think that this program will benefit her) If they decide she is behind enough in one area they will come up with a plan for Claire and tell me their suggestion of when and how long she should be in the preschool program. (2 days a week, 5 days a week, 2 hours a day or 6 hours a day. It is all specific for each child in the program.)

Please continue to pray for Claire. I really believe God's hand is on her life as he has used Claire to answer a lot of prayers in a tangible way. He has shown me that He is in control and He's got this.
"Be still and know that I am God" Psalm 46:10

We would be so grateful for any more donations on her gofundme page. I am stunned and just full  of joy, hope and GRATITUDE seeing all the donations in the past couple months. It is a HUGE weight lifted off of our family. We had a big chunk of time with no insurance and so the bills became enourmous. The amount just snowballed and felt impossible to ever pay off. BUT GOD IS GOOD  and HE IS FAITHFUL. With man, things are impossible. When I am in control, LOTS of things are impossible. But when I handed over the ropes to GOD, he showed me that all things are POSSIBLE. WITH HIM. Seriously, I never in my wildest dreams thought people would donate $9,000 to help us. Crazy.

If it is on your heart to donate or share the link it is posted below:
http://www.gofundme.com/clairetdobbs

SHE TALKS!

fb post: 

I basically have the best news in the entire world! First, as most of you know, Claire is like the dog whisperer of the family and also has epilepsy and a learning delay . . . .But before we moved to Vegas, family members basically adopted Zoey as we had no idea where we would live, how it would be with no back yard etc. and they have land and horses and Zoey has lots of room to run (great for a boxer) and she has a lab brother named Fonzie. (just in case anyone is wondering) Well, we stumbled upon a dog here in Vegas that needed a home, we adopted him and he has changed everything. (Claire had been saying a few words before we got Remi, but not often) THE NIGHT we bring home the dog, Claire turns a corner!! We were all playing with Remi and with no prompting and no teaching her the words, she just busts out "GOOD BO" (good boy) and "DROP" (drop it. . when he has the ball). . . and then its literally been crazy since then. Her therapist was SOOOO PLEASANTLY SURPRISED and could not believe what she was seeing! We went outside, CLaire pointed to the sky and said "pairplane" (airplane) all by herself. No one pointed to the plane or noticed it. I can ask her a question like "where is the doll?" and she will say "I dunno." She says "I sad" "I stuck" . . . She just said YES/YEAH for the first time. (she always says no for everything) Oh another new one from TODAY is "I CLI" (I climb) and not only is she talking, she is using the words in the right context!!!!!!!!!!! Like. . . what the heck!!! It all started with Remi. We go outside to let Remi out and Claire will say poooooo. She says "morning" . . .TOday she played with dinosaurs and made them say "night night" (pretend play which she really hasn't done much of) If i hand her something or she gives me something she will say "dareyago" "hereyago" AND an hour ago, she wanted to help clean. So i gave her a rag and sprayed windex on the cabinet and when she wanted me to spray it again she said "ceen" (clean) THIS IS ALL IN 3 DAYS!
God is good all the time. Really. I firmly believe we are here in Nevada for a reason. My baby is TALKING PEOPLE!! and SEIZURE FREE for 10 months now!!!!!!!


More new words last night and this morning. "Cup" "Hands" "tickle tickle" "not yet" aaand when Austin came home she looked at him and said "DADDY!" so so clear. 
I can't even explain the relief I feel inside!!!!! I am so grateful for everyone who has prayed for Claire. Our prayers are being answered!

Med Diag from Oct 2013

OK so Claire has been seizure free since Jan 5. Since then, I have no focused as much on her "diagnoses" or test results, bc HEY my baby is doing better! BUT- after meeting weekly with Joanne, Claire's therapist, she has really dived into all of the documents, diagnoses, reports we have as she is helping us to apply for programs to help. So she needs to know all this information.  SO below I am going to copy the exact diagnoses. I need to find out why no one has mentioned to me anything about metabolic stuff?? Is it because seizures are under control with the medicine (Onfi) and so there is no reason to look further?? Is there something else affecting Claire that we don't know about or are not addressing??. . (which is what Joanne is working on- trying to get us into see their nutritionist, geneticist etc). We do go back to Katy in December to see the geneticist at TX Children's for the FIRST time. I know we will get answers to a lot of questions then. Okay enough rambling. . . I may have made no sense above, but to me it makes since and I like having this blog because I can go back and read this stuff when doctors ask dates and times and what was going on at this time etc. Because EVERY day things change and I cannot keep up without keeping some sort of log.  After this I am going to call neuro..and ask a bunch of questions. Which I have already done, so I cant believe I missed this. . .Maybe the metabolic things are just possibilities rather than something she HAS and thats why noone has mentioned it? not sure. . . Another thing Joanne said to do is that I need to get any reports I can get my hands on from all of Claire's EEG's, MRI, just everything she has ever had.

Here is the medical diagnoses that was written OCT 2013 to send to insurance to show them that she has epilepsy and tell them that something is wrong and we need this testing. It took about 6 months just to get everyone on the same page with all the right paper work and about a million phone calls from me. (That bill is NOT included in the amount on the gofundme)

"Claire has a complex medical condition, the etiology of which remains undetermined. Claire has a developmental encephalopathy with global delays, dysmorphic features and cryptogenic generalized epilepsy with clusters of epileptic spasms. The underlying etiology of her delays and epilepsy is almost certainly a genetic condition that may represent a metabolic disorder, including Glucose Transporter Deficiency, or one of the Progressive Myoclonic Epilepsies. It is medically essential that comprehensive genetic testing be performed to determine the underlying etiology, as this will guide therapy and help anticipate the future. Genetic testing could be ordered for various conditions individually and this would require that a lumbar puncture be performed. However, Whole Exome Sequencing can now be performed that is a single test and is much less expensive than ordering all the studies separately."

Joanne

post from facebook:

Claire's new therapist Joanne is an angel yall. I am SERIOUS! She comes over with more research than anyone (besides me or my mom) has ever done on Claire and all of the big crazy words in her diagnoses. She gives me SPECIFIC examples of things to do with Claire to encourage her talking. I cannot say ENOUGH good things about her. She is helping us figure out every program we can apply for to get help for Claire, medical bills etc. She is AMAZING. Thank you for everyone who prayed for Joanne. . . God is good.

http://www.gofundme.com/clairetdobbs

Claire has now been seizure free since Jan 5, 2014. She has been weaned off Keppra and Zonegran and is now taking 2 ml of Onfi twice a day!!!!