Funding Cuts!

The State of Arizona has cut AzEIP funding. Emily will now only receive 1 hour of speech therapy a month!!  This is the letter my speech therapist sent us. We have not been contacted by our support coordinator yet.

February 26, 2009

Dear Sub-Contracted Therapy Provider,

As you are aware, the Arizona Early Intervention Program has been significantly impacted by the budget cuts intended to offset the state’s deficit. Easter Seals Blake Foundation was given a new, significantly decreased, budget to work with while at the same time continuing to support the same number of children within the program. In order to continue to support all of our families, we have had to look at making reductions in all aspects of our program and agency, as well as do our best to align our program and current systems with available resources.

In order to ensure that all families funded under the AzEIP only contract continue to receive support from the expertise of our team members within this new budget, we have had to institute the following changes to our on-going therapy frequencies:

Each family will receive one monthly home visit per service identified on their child’s Individualized Family Service Plan (IFSP).
Each monthly visit should be approximately one hour and cannot exceed two hours in length.

The above changes are effective as of March 1st, 2009 and will be continued through June 30th. Therapy frequencies will be revisited once our agency receives additional financial information in the new fiscal year. If the team decides that the family and child would benefit from more frequent therapy visits, then we encourage the team to go through the child’s health plan. AzEIP is currently working to develop a basic overview for billing AHCCCS and a protocol for accessing EPSDT services through AHCCCS. Once we receive this procedure, it will be forwarded to you immediately. Our service coordinators will begin to contact families today in order to discuss these changes.

There currently are no changes to the Initial Planning Process and our Developmental Specialists will continue to refer children to you for an evaluation to assist in eligibility determination.

Much consideration and planning has gone into making these very difficult decisions in order to minimize the impact that these devastating cuts will have on the families we support, our staff, and our subcontractors. We understand how these changes may affect you and will do our best to support you during this time. Your commitment to each other, to the program, and to the children and families that we serve is appreciated. Please know that our commitment to you is just as strong.

Our management team will continue to evaluate our current systems and resources in order to prepare financially for the next fiscal year and would appreciate any input from you. Please be reminded that the above listed changes only pertain to AzEIP only funded children (not DDD children). If you have any questions, please do not hesitate to contact me at (000) 000-0000 x 0000 or any of our early intervention supervisors.

Sincerely,

M W

Matt & I are going to do what ever it takes to make sure Emily gets at least weekly speech therapy. It cost $85 a session! Right now Emily is getting 4 sessions a month but she really needs to be getting 3 sessions a week (12 sessions a month). As of right now our insurance wont cover speech therapy. Once we have Lowe's insurance we will have 5 sessions a month (hopefully...thats the max they offer). So right now I am looking at what we can cut from our budget right now so she can have what she needs! As of right now she will still be starting school on March 30th. I am so thankful that she is going to be 3! I feel for the families with children who are younger & in need of these services! I don't think our government has thought about what the effects of cut these services will be! Unfortunately it is usually the children & people in need that get cuts first!

Alicia

Fish Oil

We have decided to start Emily on fish oil supplements. In my research I noticed that many families give fish oil supplements to their Apraxic child. There has been no official research done to prove that it helps but most parents notice a significant difference in their child's speech. It helps with the neurological connections in the brain (Apraxia is a neurological disorder).

Emily loves them! She is taking a gel cap that is flavored lemon but instead of swallowing it whole she chews it! She says "mmm" so I think she likes it. I am also taking them with her but not brave enough to chew. Yuck. I have been wondering if the center is flavored lemon or just the liquid inside. Well a couple days ago I was running late to get the boys to school so I grabbed Emily's pill & gave it to her in the car. I think she put her hands in her mouth & then in her hair because she smelled like fish all day long! Eewww! It wasn't very pleasant. I washed her hair 3 times that night to get the smell out! I will definitely not be chewing mine!

What Kind of Help Will My Child Need?

Children with CAS will need to begin speech therapy with a speech-language pathologist (SLP). Exactly how often the child should have speech therapy will vary according to the individual needs of each child. Children with CAS who have severely unclear or little speech and are more severely affected will require more therapy than those who have milder apraxia. Typically, experienced SLP’s will suggest that a child with moderate to severe apraxia of speech have 3 – 5 times a week of individual speech therapy. Other considerations may have to do with the extent to which the child will practice at home with their parents or caregivers; how much the child can individually tolerate; how frequently the parents can bring their child to speech therapy, etc.

As a child begins to make progress in their ability to produce speech that is understood by others, the amount and frequency of therapy can be adjusted accordingly. Another consideration will be the extent to which other speech and language issues are present in addition to the apraxia of speech.

Speech therapy for a child in which motor planning and programming (CAS) is felt to be the major contributor to the speech problem will involve a number of “key” principles. This is not to suggest that there is one method that is effective. There are a number of features of speech therapy that appear to be most successful to children with apraxia of speech. These features include:

principles of “motor learning” such as a high degree of practice and repetition, correction and feedback, slowed rate, and a focus on targeted motor placement and productions

Increased sensory input for control of the movement sequences and sensory cueing such as visual, tactile, and kinesthetic cueing; touch cueing; verbal cueing.

use of rhythm and melody

focus on speech sequences versus individual sounds

Many experienced speech-language pathologists use multiple methods and approaches rather than a "one approach fits all" notion, taking many of the methods mentioned above and using them based on the individual child's needs. There is no one "program" that is right for every child with apraxia of speech. Commercial products, programs, or kits can be tools for use in therapy by a SLP who understands the nature of apraxia and how to treat it. However, such programs alone are not the solution.

Children with apraxia of speech reportedly do not progress well in their actual speech production with therapy tailored for other articulation problems or with language stimulation approaches. Additionally, in young children the motor/sensory techniques and repetitions of words and target phrases should be woven into play activities that are highly motivational to them. What experienced therapists and families report is that children with apraxia need frequent one-on-one therapy and lots of repetition of sounds, sound sequences, and movement patterns in order to incorporate them and make them automatic.

In addition, many therapists recommend the use of sign language, picture books, and other means to augment speech in the child who is not clearly understood. This approach may be called "total communication." Having the child pair a vocal word attempt with a sign enhances the chance that the listener will be able to "catch" the communication (if the spoken word isn't understood, perhaps the sign will be). Having others understand the communication can offer the child motivation and the feeling of success in using their voice to communicate.

Many children with apraxia of speech, even at young ages, have some awareness of their difficulty. Providing successful communication experiences only encourages the child. Also, for children with apraxia of speech, signs can become important visual cues to help them know how to place their mouths, etc. in order to produce the desired word. When pairing of spoken word and sign is consistent, the child may come to associate the visual image of the sign with the placement of their articulators. In a few children, sign may not be appropriate. For example, for some children signing might be too distracting or their ability to consistently form a sign may be impaired.

Finally, it is important for parents and others to understand that many children will have other needs, above and beyond the speech practice mentioned above. Many children will also need to work on using language, such as how to put sentences together appropriately; use verb tenses; word endings, and so forth. Some children may have some degree of difficulty understanding language and that will need addressed in speech therapy in addition to the speech production practice that is needed for the apraxia part of their difficulty. Some children will need to learn conversational skills like turn taking, staying on topic, giving eye contact, and other “pragmatic” skills. All of these areas would require their own approaches and are above and beyond what is needed to improve speech production.

Other Professionals

If you have concerns about your child’s development in addition to their speech, other professionals may be called on to get involved in helping your child. For example, a developmental pediatrician can evaluate all aspects of your child’s development. A Developmental Pediatrician is a pediatrician with advanced training in neurodevelopmental disorders and “atypical” child development. This type of professional can help recommend and coordinate services that the child may need. A Pediatric Neurologist may be helpful if there are overall neurological concerns in addition to speech. Other professionals that can evaluate and treat other aspects of a child’s function, include occupational therapists, physical therapists, and developmental specialists.

-Apraxia-KIDS at http://www.apraxia-kids.org/

We are so blessed to have her in our lives! She brings light to my life every single day!

~It Official~

Or it will be next Friday! Emily will be formally diagnosed with Apraxia. Wow! I just am not sure how I truly feel. I am happy that we are able to have EI (early intervention) & I am happy that our ST knows what Apraxia is, how to diagnose it, treat it, etc. Am I ready for this road? No! Do I want to be here? No, not really! Do I have a choice? Once again, No! 

Here we go as a family moving ahead to make sure that Emily has the best treatments possible! I am thankful that we qualify for free preschool but I know that they can not offer enough help for my little girl. I am also thankful that I get 60 ST sessions in a calendar year (approximately 5 per month) through our insurance but that is not near enough. So I guess the big question for me is, how do we make sure she has everything she needs (at school & home)? I guess we hope that the school understands the severity of her condition & get her everything she needs for home. Then we hope & pray that everything else falls into place!

 

Middle or Last Child?

Where does Miss Emily fit? Both! I think she fits strongly into both categories! I have marked Emily's traits with the *.

Middle

*Flexible

*Easy-going

*Social

*Peacemaker

*Independent

*Secretive  

May feel life is unfair

*Strong negotiator

*Generous 

Last

*Risk-taker

*Outgoing

*Creative

Self-centered

Financially irresponsible

*Competitive

*Bored easily

*Likes to be pampered

*Sense of humor

Along with all these traits Emily is also... Demanding, Sensitive & extremely Loving!

Transition Meeting

For those that don't know... the government covers ST for delayed children in the home from birth to 3 years old. Once the child turns 3 the local School District takes over by offering free preschool & therapies to children that qualify. Emily more than qualifies!

We had our first Transition Meeting! Unfortunately Matt was not able to make it but I am glad because it only lasted for 20 minutes (it would have been a waste for him to take off). There were 5 school representatives, Ms. Deann (our Early Intervention rep.) & myself in attendance. We went over Emily's medical history, her testing scores & her progress reports from Ms. Amber (ST). She was accepted into the program without any further testing. I told them that our current ST strongly feels that Emily has Apraxia & wanted more information on how that would be handled in the school setting. Their ST was out of town so they will be talking with her about it when she returns. They knew what Apraxia was & that it took lots of therapy to make progress. The school is 4 days a week for 3 hours a day. They would like her to begin once school resumes after spring break so her first day will be March 30th.

We have our IEP Meeting set up for March 11th. This will be the big meeting!! We will set up the goals we have for Emily & how they will be met. Including how much therapy she will receive!! I am hoping to get at least 30 minutes a day of one-on-one therapy with the SLP (speech language pathologist). That would be 2 hours of ST at school a week. Our insurance will cover approximately 5 ST sessions in a month so we could have a hour of ST in home. That would give Emily 3 hours of speech every week! I am not sure about the summer but I am hoping that the school will allow her to do a summer program. I have heard of so many children with Apraxia regressing during the summer months. If they don't offer her something we will have to pick up on the in home therapy during that month. Right now we are very thankful that we are able to get help from the government & the school district to help Emily! (therapy is extremely expensive) 

She is a wonderful child that deserves to be heard! We are truly blessed to have her in our lives!

Alicia

~Bedtime~

I have never had issues with any of the kids going to bed. Until now!! Over the last 2 months Emily will not go to bed. She's up night after night fighting with us to stay in bed. All she wants to do is either play or hangout with us downstairs. We have tried to Super Nanny her (not talking to her & placing her right back in bed) but it becomes hour, after hour, after hour of screaming! It ends usually with exhausted parents & Emily still awake but now absolutely upset.  We have tried taking away her daytime naps hoping that she will be exhausted by bedtime. Nope she is still awake! She will not go to bed without the cheap IKEA hanging light on (oh & the night light by the bed). Right now that is the only leverage that I have. "If you don't stay in bed, Mommy will turn out the lights". Usually it works but not always. 

My only thoughts are that maybe along with Apraxia she has a very mild Sensory Disorder (SD). SD's very commonly accompany Apraxia. She does have other traits that are commonly associated with SD's such as hyperactivity (only at certain times not all the time), sensitivity to light, mouthing things, seeks out "daring" things (like jumping & bumping into items or people) just to name a few. some of them can go along with normal things kids do at her age group but all together can be a sign.  There really aren't any treatments I would try for SD (if she does have one). I only hope that she learns how to live with it. Right now everything is so new & we are still in the process of learning exactly what is going on with her. So until we have a firm diagnosis this is all just speculation. For now we can only wait & see.

So I am up every night, just like tonight... put her back in bed for the 28th time. Telling her she needs to lay down & go to sleep or the lights are going to be turned off.  Now back to bed for the 29th time tonight but this time without the lights!

Alicia

Emily's Verbal Word List...

Ma 

Da

Ale (Alex)

Unte (Hunter)

am (Cameron)

Papa

dog

mil (milk)

ba (bottle/sippy)

I 

wan (want)

i (it)

me

ov (love)

ou (you)

ank (thank)

eass (please)

pooh (as in winnie)

no

jui (juice)

wha (what)

do (doing)

go

one

wo (two)

ree (three)

iraf (giraffe)

bal (ball)

al (all)

don (done)

Multiple Word Combinations...

I wan it (I want it)

ove ou (I love you)

ank ou (thank you)

wha ou do (what are you doing)

al don (all done)

Emily's Signs...

milk

juice

eat

more

please

thank you

all done

cookie

apple

banana

orange

dog

cat

lion

tiger

bear

bird

pig

zebra

giraffe

cup

drink

monkey

turtle

elephant

hurt

change

alligator

fish

sheep

help

sleep/bedtime

baby

mouse

duck

snake

book

good

bad

brush teeth

chicken

train

red

yellow

Hopes for this Blog

My hopes for this blog initially is to keep family & friends updated on what is going on with Emily & her development. As Emily develops I hope to educate others about Apraxia as well as share our experiences with other parents of Apraxic children. 

We are just at the beginning & have a long road ahead of us. With the support of God, our family & our friends I know that we will make it through.  Please take sometime & check out the links I have placed to the right of the blog. Especially Apraxia-KIDS & Apraxia Speaks. They are a wealth of information on Apraxia!  Knowledge is life! Thanks.

Love,

Alicia & Matt

What is Childhood Apraxia of Speech?

Childhood Apraxia of Speech is a motor speech disorder. For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech. Apraxia of speech is sometimes called verbal apraxia, developmental apraxia of speech, or verbal dyspraxia. No matter what name is used, the most important concept is the root word "praxis." Praxis means planned movement. To some degree or another, a child with the diagnosis of apraxia of speech has difficulty programming and planning speech movements. Apraxia of speech is a specific speech disorder.

The act of speech begins with an intention to communicate. Next, an idea forms, outlining what the speaker wants to say. The words for the desired message are put in the correct order, using the correct grammar. Each of the words are comprised of a specific sequence of sounds (also called phonemes)and syllables that must be ordered together. All of this information is translated from an idea and information about order of sounds into a series of highly coordinated motor movements of the lips, tongue, jaw, and soft palate. 

The brain must tell the muscles of these “articulators” the exact order and timing of movements so that the words in the message are properly articulated. Finally, the muscles must work properly with enough strength and muscle tone to perform the movements needed for speech.

In typically developing speech, children make word attempts and get feedback from others and from their own internal systems regarding how “well” the words they produced matched the ones that they wanted to produce. Children use this information the next time they attempt the words and essentially are able to “learn from experience.” Usually once syllables and words are spoken repeatedly, the speech motor act becomes automatic. Speech motor plans and programs are stored in the brain and can be accessed effortlessly when they are needed. Children with apraxia of speech have difficulty in this aspect of speech. It is believed that children with CAS may not be able to form or access speech motor plans and programs or that these plans and programs are faulty for some reason.

- Apraxia-KIDS at www.apraxia-kids.org 

A Little Background Information

A little background information on Emily. We had a great birth, no complications, it was quick & easy. We were out of the hospital in 24 hours. She latched & nursed like a pro! She was very mellow & laid back, hardly ever fussed unless she was hungry. At about 2 months the Doctors were concerned because she was "falling off" the curve on the charts. At 3 months our Pediatrician labeled Emily as FTT (failure to thrive). Essentially that meant she wasn't growing at the rate that a "normal" child would so she wasn't "thriving".  So that is when we began a insane year long journey with many different Doctors & strings of tests. All ending up at the same place... she was normal just small! Matt & I finally decided after over a year to put a end to all the tests. She has been following her "own curve" for almost 2 years now. At our 2 year wellness visit I brought up concerns about Emily's speech or lack of speech. The Pediatrician was not too concerned & told us that she was probably a "late talker" so just wait & see, we could talk about it at her next appointment (2 1/2 years). After 3 months of waiting we decided to take her in again & push the Doctor to have a evaluation done. In August, Emily was evaluated by the state of Arizona & found to have a speech delay. She began Speech Therapy (ST) 2 times a month & Developmental Therapy (DT) 2 times a month (alternating weeks). In December the Speech Therapist mention Apraxia to Matt & I. She told us a little about it & asked us to look it up & tell us if we thought it sounded like Emily's speech issues. After a ton of research I found that Emily fit very well into the signs of having Apraxia. We have not had a formal diagnosis of Apraxia yet. But are planning on having that done real soon. We have upped her ST to every week with DT still ever other week. We are also in the process of transitioning her to a preschool. The State no longer provides therapy at the age of 3 but the School District is required to. We hope to continue working with the SLP (speech therapist) Ms. Amber,  after Emily starts school. Emily really likes her & seems to respond to her techniques. Hopefully we can afford it. 

I am amazed that my little baby girl is going to turn 3 years old in 2 more months! Wow, how time gets away from you when you aren't looking!

Alicia