Hello, Early Intervention Speech Therapy readers!

Stephanie is taking a brief hiatus. She'll return with a new post next Friday. In the meantime, consider this post an open thread to initiate discussion with colleagues about issues pertinent to early intervention. Or, feel free to leave suggestions for Stephanie regarding topics you'd like to see covered in this blog.

Please take care to keep comments appropriate and on-topic.

Thank you for your continued readership and enthusiasm for Stephanie's blog!

Alyssa Banotai
Web Editor
ADVANCE for Speech-Language Pathologists & Audiologists

Every few days or so, I read through recent comments posted throughout the blog and attempt to address the questions that have been raised by our readers. One of the most pressing issues that is frequently raised by parents reading the blog is apraxia.

When I review the questions and concerns asked by parents, I can hear the intense concern and worry in their messages. It seems as though most of these parents have taken steps to secure early intervention services for their child and may even be paying for some private therapy; however most feel that what their child is receiving is simply not enough. They are concerned that progress is not fast enough and time is slipping away. These fears are legitimate and widespread.

Back in January of this year I interviewed Sharon Gretz, MEd. She is the founder and current executive director of the Childhood Apraxia of Speech Association of North America (CASANA). She also is the parent of a child diagnosed with apraxia of speech.  

Our interview occurred over 2 posts published on January 27^th and January 30^th 2009. In this interview we discussed in detail many topics including the following information:

• Sharon's personal story regarding her son and his diagnosis of severe apraxia at age 3
• The "multi-sensory" techniques that worked for her son, as well as the additional and numerous strategies that were implemented into his dynamic therapy plan.
• Advice for parents hearing the "apraxia" diagnosis for the first time: where to turn, where to begin.
• The wonderful resources the CASANA Web site offers families and therapists.

If you are a parent whose child has either received the "apraxia" diagnosis or you suspect that this may be what is underlying your child's speech delay, please refer back to my two-part interview with Sharon Gretz, MEd from January, 2009 and her information which can be found at the CASANA Web site.

"...I need an explanation of what qualifies as a "25%" delay. I typically am not involved in the eligibility process but was recently put in the position.  How is the 25% delay determined?  Does the child have to score below a certain percentile or be a certain number of standard deviations below?"

Like our reader, I am usually not a key player in the eligibility process. I am not part of an initial evaluation team; however I do assess the children on my caseload prior to their annual review to determine their levels of development and if they indeed continue to qualify for speech and language services. Before responding to this question, I did some additional research to see if what we do here in Delaware County, Pennsylvania is uniform with what is happening across the country and beyond. Here is some of the information I found:

According to the Lancaster County (PA) Early Intervention Web site, a child is eligible for early intervention if they have a 25 percent delay in one or more areas of development.

• Physical Development—Ability to move, see, and hear
• Speech and Language Development—Ability to talk, express needs
• Social and emotional development—Ability to relate to others
• Self help (or adaptive skills)—Ability to eat, dress, and take care of themselves
• Cognitive development—Ability to think and learn

On the Wisconsin Birth to 3 Program Web site, the process is further outlined and reads as follows: 

• a) A diagnosed physical or mental condition with a high probability of resulting in a developmental delay, based on the early intervention team's informed clinical opinion and supported by a physician's report documenting the condition.
• b) A developmental delay of 25 percent (or 1.3 standard deviation below the mean) in one or more areas of development. This delay is documented from a number of perspectives (i.e., observations in natural environments, testing procedures, review of records, parent report and informed clinical opinion) by a qualified early intervention team that includes the parents.
• c) Atypical development that is based on the informed clinical opinion of the early intervention team. When testing results closely approach but do not demonstrate a delay (25 percent or -1.3 S.D.) and observations indicate that some aspect of the child's development is atypical and adversely affecting the child's overall development, the early intervention team may use alternative procedures to document atypical development and conclude that the child should be considered developmentally delayed.

Washington State also mandates that the child must have a 25 percent delay; however they qualify this as "1.5 standard deviations below his or her age in one or more of the developmental areas. A child may also be eligible if he or she has a physical or mental condition such as Down Syndrome that is known to cause a delay in development". This is different from Wisconsin which equates 25 percent as 1.3 standard deviations. Not a huge difference but it could be the deciding factor for whether or not a child qualifies for services.

Based upon the research and websites I've reviewed, it seems as though the most educated response I can give to our reader(s) regarding eligibility is to FIND OUT WHAT THE SPECIFIC GUIDELINES IN YOUR COUNTY ARE and FOLLOW THEM. Although it appears that the 25 percent delay is standard throughout the US, there seems to also be more detailed instructions and deciding factors that are state and county specific. If you are entering a new position and are part of an evaluation team, make sure you know your facts so that the law in your area is being followed.

Please write in and share your thoughts and experiences regarding this topic! Also please send in topic requests and issues YOU would like to see addressed on the blog!

On September 29^th 2009 we published a post entitled: Autism and Early Intervention Speech Goals. The post discussed a local case of a speech therapist working with 3-5 years olds who prefers and recommends only using sign language with children diagnosed with autism. When the IEP goals were written for this child transitioning from birth-3 to the 3-5 program, none of the goals addressed verbally stimulating the child or using picture communication. I wanted to revisit this post because there was such an overwhelming response from therapists regarding the issue at hand.

In addition, it raised the question of how we as therapists should be treating children who fall within this category. I think this is a very vital issue within our field and I would like to highlight some of the helpful and interesting suggestions that colleagues offered in their comments after reading the post.

Many of you were outraged at the thought of ONLY using sign language with a non-verbal toddler. One therapist described the practice as "limiting" and another went on to say, "I too found it hard to believe that anyone in this day and age would focus solely on sign language. Certainly sign should be a component of a total communication approach, but I almost always use all three communication systems..."

Overall, the majority of comments supported the practice and promotion of multi-modality communication when working with very young children who are non-verbal. One therapist shared her views by saying, "I believe it is negligent to concentrate on signs without verbalizations, especially since the child is already beginning to talk. Signs should be a means toward an end, not the end itself.  Studies have shown that signs paired with verbalizations will help increase verbalizations".

Another therapist expressed her outrage this way, "I couldn't believe what I was reading!  I worked with the autistic population for ten years in a collaborative therapy model approach and ALWAYS used a combination of all three modes to achieve optimum results".

Finally, two other therapists mentioned a fourth option called "Enhanced Natural Gestures" taught by Dr. Stephen Calculator and recommended it as an additional way to promote effective communication. As one therapist stated, "these gestures don't require anyone to really "learn" sign language.  The gestures are fairly recognizable to the average guy...." which essentially is the point of successful communication.

Reading through the comments and suggestions, I was thrilled to see so many therapists weigh in on this issue and share their expertise. Thank you!!

Halloween is just a few short weeks away and those who read my blog often know how much I love the holidays and festive therapy sessions!

Last October I wrote a post filled with simple ways to add a little Halloween fun to your therapy sessions. The post was called Halloween Therapy: Tricks n' Treats and featured ideas such as: carving a pumpkin, making a construction paper pumpkin face, dressing up in costumes, face-painting, reading Halloween books, painting with Halloween stamps, making pumpkin-flavored milkshakes and singing Halloween songs, such as Five Little Pumpkins!

Acknowledging the fact that we need to provide routines-based therapy sessions, some of you may wonder if making milkshakes and painting with Halloween stamps is really part of a child's daily routine. My answer to you is YES! As I have mentioned in previous posts, I believe that you are not only addressing any speech issues that may arise during this time of year, but you can also hone in on specific skills, such as vocabulary development related to the season, sentence building, making requests and choices, answering questions and following directions, etc. AND, if the materials being used are fun and novel, many times the child will be even more interested and willing to "use their words" and engage in a family activity.

In addition, if the family is crafty or likes to bake and cook, you can nurture these interests in your sessions. However, if they do not usually engage in activities such as those mentioned, but would like to, therapy is a wonderful place to start!

Here are some fresh, festive ideas for Halloween 2009:

• Construction Paper Candy Corn—Using the traditional candy corn colors (white, yellow and orange) cut out the large, medium and small triangle shapes. Yellow, the bottom piece is the biggest, orange is the medium triangle which goes on top next and the white triangle is the smallest and is glued at the very top. Make it as big or as small as you want and always provide a visual model. Add google eyes to the candy corn and you can use them to engage the child in pretend play and practice sentence expansion.
  
• Feeding Therapy—Make it festive and tasty! Make pumpkin muffins with orange and black sprinkles or roll out your own sugar cookies using spooky cookie cutters. Kids love to help cook and many times even the pickiest eaters will taste their own creations.
  
• Halloween Sticker Scene—Kids love stickers! This is a simple activity to help with making choices, developing vocabulary and building sentences. Use simple stickers, such as: ghost, bat, cat, pumpkin, etc. and have the child choose the ones they want to make a spooky Halloween scene.

What other treats do you have in your Halloween Therapy Bag?!

This mom was openly resistant to this idea last week and shared some of her fears regarding her children doing anything outside of their home. I asked that when I return this week, she rethink her decision and reinforced to her that we would all be together so that she would be participating in everything.

I am happy to report that she did in fact rethink the suggestion! When I arrived for my scheduled appointment she was waiting for me and was in the process of getting her children dressed to go outside. She was on the verge of tears during part of this preparation; however she stayed focused, loaded the kids into a double seated wagon and off we went!

What I learned during this trip was that this 27-month-old little girl has very little to no experience in this type of setting. She wasn't able to get in and out of the wagon or walk on the wood chips and was very frightened at first of the swing. She was silent the entire time. This little girl has global needs and like all children, will benefit from frequent exposure to a variety of age-appropriate activities.

Overall, I feel our session was a big success! I now have substantial data to support my previous thoughts that this child needs a PT evaluation. In addition, we spotted a local recreation center that has various activities for children of all ages within walking distance of the home, which mom was willing to "look into". Finally, a trust was created between this mom and her neighborhood and maybe even with her self. I am hoping that this week's session can serve as a springboard for many new experiences to come both during speech therapy and beyond!

A day like this is a reminder that many times in home care we are treating not only the child, but the entire family as well.

In addition to these existing issues, the family dynamic at home is less than ideal for any child, let alone a child who is demonstrating signs of autism. Despite a somewhat cool summer and now beautiful fall weather in our little part of the world, the doors, windows and shades in this home are always tightly drawn. No fresh air, no sunlight is able to peek through at any time. To add to this situation, whenever any of the three therapists arrive, the little girl jumps in her stroller as if to say, "Let's GO!" She is completely nonverbal at this stage in her life, but her actions tell the story of her reality.

This past week, I suggested to mom that she and I take her little girl one block down the street to the neighborhood park for our speech session. The weather was beautiful and I thought this would be a perfect baby step for this mom to take. She declined with a myriad of reasons and I didn't push; however I suggested that we revisit the plan this week when I returned.

We discussed the importance of providing various community-based opportunities for her child so that she can work on her play and socialization skills. In addition, we discussed ways that she can independently provide these opportunities for her children. Local venues such as the library, parks and the YMCA are all viable options for this family and would be safe, inexpensive ways to spend some time in the community.

I am looking forward to my visit this week and am hoping we can take our long overdue visit to the neighborhood park. Talking with this mom last week confirmed for me that many layers of fear, depression and anxiety lurk beneath the surface, but as the next year of therapy progresses I hope we can begin to chip away at these issues and create a new reality for this mom and her family.

In addition, I shared a personal story regarding a local school therapist working with children 3-5 years old who have been diagnosed with autism. The strategies being taught at this school focus specifically on using sign language as the main mode of communication with these children. The use of pictures is not normally supported because the child may not always have access to the necessary icons. In addition, in this specific case, verbal stimulation was also not included in the IEP; however the exact reasoning is unknown. These decisions were made by the 3-5 IEP team despite the fact that this child has been exposed to all three forms of communication in the birth-3 program and has demonstrated understanding and independent, although limited, use of each. Needless to say, the birth-3 team is very concerned that the long term goal for this child does not include verbal communication and that the child's current foundation of skills will not be nurtured.

Since the meeting, the family has chosen to revisit the IEP wording with the new school and is asking that a specific verbal stimulation goal/strategy be added. Their long term goal for their soon to be 3-year-old child is for her to be verbal and didn't understand during the meeting that this would not be directly addressed based on how the IEP was written.

Since posting this article, several people have written in sharing their thoughts and theories on the topic at hand. One therapist wrote: "I think all of the options (sign, pics, and verbal) should be used especially for a child this age!" I agree and would like to add to her words by stating that I generally present all three in some form when I am working with a child that is basically silent and barely communicating, autistic or not. I feel that as a therapist it is my responsibility to give a young child in early intervention every opportunity to communicate. What I have learned is that some children will respond well to at least one of these three forms of communication. I always make verbal communication the main goal; however I use pictures and signs to support and supplement the communication process when necessary and appropriate.

Please continue to share your thoughts on this topic!

Over the past year this blog has addressed a variety of syndromes, disorders and conditions that affect the many children we treat in early intervention. Due to my lack of time (but not lack of interest!), I do not always have a chance to research all the suggestions that people post and share on the blog. I always find this frustrating because I enjoy hearing what other therapists are doing to enhance their sessions. So, for today's post, I have read back through the year's posts and gathered together a list of suggested programs, techniques and resources that other therapists recommend! Enjoy!

• PROMPT (Prompts for Restructuring Oral Motor Phonetic Targets)—This was recommended by a therapist who works with children with Down syndrome. When I researched the program I discovered that it was actually created to treat Apraxia; however can be used with any diagnosis whenever appropriate.
  
• The M.O.R.E. program, by Patti Oetter, OTR/L. This program was recommended by a therapist who uses oral-motor therapy to supplement her treatment. Materials include a book and a DVD.
  
• Rett Syndrome Research Trust—"The goal of the Rett Syndrome Research Trust isto deliver clinical trials of a novel treatment strategy within five years". It is a "newly formed 501(c)(3) nonprofit organization intensively focused on the development of treatments and cures for Rett Syndrome and related MECP2 disorders." Recommended as a resource for parents of children diagnosed with the syndrome.
  
• Look 'n' Cook: Step-by-Step Recipes for Young Chefs Preschool/ Kindergarten (Paperback) —suggested by a therapist who includes easy kid-friendly cooking recipes with her toddler feeding therapy.

I would like to state that I myself have not personally used any of these resources yet in my daily sessions and have spent just a brief time researching each. However, based upon the recommendations of my colleagues and what I have read regarding each, these resources appear helpful and informative. If anyone reading today's post has personally used one or some of these resources, please write in and tell your experience. In addition, if you have other programs and resources that you feel your kiddos benefit from, please share!

As I have stated numerous times before on this blog, it is from each other that we can often learn the most!

Last October when I first began writing this blog, I wrote a post entitled: Fall Fun: Using Seasonal Themes to Enhance Therapy, which featured a variety of fall activities that therapists could do with young children during an EI session. I always find seasonal activities to be fun and because the activity is focused around the time of year, the subject matter is relevant to the child’s environment.

Over the last year, as many of you know, there has been a big shift in the therapeutic focus in the county in which I work. Our sessions have become even more routines based and there is also a heightened demand to keep track of data. When I addressed this in previous posts, many of you wrote in sharing that the same shift was happening in your area. So in an attempt celebrate the season and yet still meet the standards of our county and ensure that therapy is appropriate, I would like to offer some NEW ideas that may fit better into the routines based approach that is mandated throughout many areas.

To implement any of the suggested ideas below, you will need to plan ahead with mom to ensure that she is in agreement to the activities and willing to plan and participate wherever necessary:

• Trip to a Local Orchard – If there is a local orchard nearby where the family enjoys visiting or would like to visit, go!! This is part of the child’s environment and providing a wonderful opportunity to work on social skills, vocabulary, following directions, etc.
• Fall Recipes and Crafts with Mom – If the family you are working with enjoys cooking and crafts, what a great time to have mom plan out one of her ideas and you assist by building speech and language skills into the family activities.
• Local Fall Activities at Libraries, YMCA, etc. – Keep an eye out for fall events and activities that are open to the public! What a great way to once again practice social skills, vocabulary and following directions. Many times local venues will have free or very inexpensive festive events that are open to the public (i.e. pumpkin carving, fall/pumpkin book readings, fall festivals, etc.).
  

Hope you find these helpful and in line with your therapeutic goals. Please write in and share your own ideas for fall therapy sessions!

When I first visited the home and met mom, she was very hopeful about her daughter. She knew she was delayed; however she was confident that she would one day walk, talk and do all the things her other children could do.

Over the next few months, I began to see mom's behavior and disposition change. She no longer seemed as hopeful and decided to take her daughter for genetic testing to try to get some answers. During those weeks of waiting, mom became more and more withdrawn. She was rarely in our sessions (often grandma was instead) and when she was present she seemed increasingly uninterested in therapy. Mom confided that she "is really hoping it's nothing too serious" but also shared that she was researching several disorders on the internet. Looking back, I now see that she was quite appropriately in the third phase of acceptance: Bargaining.

Then, in mid-spring, the dreaded diagnosis came: Rett syndrome. It was during this time, that mom promptly tumbled into the fourth phase: Depression. Over the next several weeks, I saw mom become increasingly sad and she cried during several of our sessions. She seemed very uninterested during therapy and shared that she wasn't sleeping much. Week after week, she looked tired, lethargic and overwhelmed.

Looking back over the last 10 months since our therapy began, I've watched this mom transform from one phase of acceptance to the next. As a team, my coworkers and I have supported her through the process by asking questions and providing educational literature and information about the syndrome. Acceptance was never forced, but quietly encouraged.

In the last month, a change has occurred. Mom has decided to use her personal medical insurance to pursue some private therapy for her daughter. She is taking a more proactive role in her development and growth. She seems open to suggestions for useful therapy ideas, but is also realistic about her child's current level of functioning and how much she can handle at this stage in the process. Mom is increasingly talkative and inquisitive and our sessions have become more interactive and productive as we problem-solve together. Mom got to this phase on her own and it is important to note that it really began when her daughter was only a few months old and took until now - she will be three in December. 

For additional information, the following resources are two websites that offer more detailed information about Elizabeth Kübler-Ross and her Five Stages of Acceptance:

http://www.ekrfoundation.org/index.html

http://www.businessballs.com/elisabeth_kubler_ross_five_stages_of_grief.htm

Last week I wrote a post entitled Parents and the Five Stages of Acceptance. Today's post is a continuation and will provide more information about what Elizabeth Kübler-Ross taught us and how we can utilize it in early intervention.

Based on my research of her teachings and what I found at Wikipedia, she shared that "originally these stages applied to people suffering from terminal illness, and later to any form of catastrophic personal loss (job, income, freedom)". However, what I was taught and have come to know though my profession and personal experiences is that parents who have a child diagnosed with a disability of some kind, also travel through the stages of acceptance in order to be able to cope with the often overwhelming and worrisome situation.

Kübler-Ross claimed that "these steps do not necessarily come in order [Denial, Anger, Bargaining, Depression and Acceptance] nor are all steps experienced by all patients, though she stated a person will always experience at least two. Often, people will experience several stages in a "roller coaster" effect - switching between two or more stages, returning to one or more several times before working through it".  

The Web site goes on to say that other "people experiencing the stages should not force the process. The grief process is highly personal and should not be rushed, nor lengthened, on the basis of an individual's imposed time frame or opinion. One should merely be aware that the stages will be worked through and the ultimate stage of "Acceptance" will be reached".

Try to keep this in mind when working with your families in E.I. Although WE, as therapists can often see what the family/child needs to progress, many times the parent(s) is still simply accepting that their child is not developing normally. As Kübler-Ross taught, it is important to allow parents to come to these realizations in their own time.

Whenever I have tried to push someone to "accept" something, it usually backfires. What I have learned is that you can guide and educate them, show them how to problem-solve and manage the situation, comfort and console them when they need it, but the true acceptance that occurs deep within a person's spirit occurs only when they are ready. For some, the process takes weeks, for others it takes months and for many, it takes years.

"I have a little boy who just turned 2 and is not talking, babbling, or vocalizing in any way shape or form.  I have educated the mother repeatedly regarding having his hearing checked and the possibility of other diagnoses and need for evaluation at our Children's Hospital.  She is in denial over the whole thing and says her brother did not talk until he was 3 years old and she wants to wait and see if her son will one day start talking.  He also has eating issues.  He does not present with signs of autism, so I am concerned about severe apraxia.  I wasn't sure if you had run in to cases where you have a child who the parents think is just a "late-talker" and you continue doing language therapy but you suspect something else is wrong. Is there a way you've helped the parents to see that something is really wrong?"

I thought this was an important email to share with both therapists and parents who may tune into this blog from time to time. I have often worked with parents who were basically in denial about the severity of their child's delay and/or disorder. What I have learned as a therapist, is that you really cannot rush the process. Parents will come to understand and accept their child's disability in time and sometimes it happens AFTER they leave the Birth-3 program.

When I was in school studying to become an SLP, we learned about The Five Stages of Grief/Acceptance created by Elizabeth Kübler-Ross, who wrote about it in her 1969 book, On Death and Dying. Although the environment in which we work does not often deal specifically with death and dying, for many parents, they are learning to accept the death of a dream, the dream and vision they had for their child. We, as EI therapists, are there in those early stages to help them along with as much education, support and compassion as is appropriate.

Below is a brief summary from Wikipedia explaining the Five Stages of Acceptance.  I have added some commentary to show the connection with parents involved in the EI process.

1. Denial—"This can't be happening, not to me or my child."
   Denial is usually only a temporary defense for the individual. This feeling is generally replaced with heightened awareness of the situation.
2. Anger—"Why me? It's not fair!"; "How can this happen to me, my child, my family?"; "Who is to blame?"
   Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person can very difficult to talk to due to misplaced feelings of rage and envy.
3. Bargaining—"I'll do anything for a ‘normal' child".
   The third stage involves the hope that the individual can somehow change the situation. Usually, the negotiation for an improved situation is made with a higher power in exchange for a reformed lifestyle. Psychologically, the person is saying, "I understand my child isn't talking yet, but maybe it's because he is just delayed, he'll catch up".
4. Depression—"I'm so sad, why bother with anything"
   During the fourth stage, the individual may become silent, refuse visitors and spend much of the time crying and grieving. This process allows the parent to disconnect from you, other family members and maybe even their child. It is not recommended to attempt to cheer an individual up that is in this stage. It is an important time for grieving that must be processed.
5. Acceptance— "It's going to be okay."; "I can't fight it, I need to handle this situation."
   This final stage comes with peace and understanding of the reality of the situation.

Please read next Tuesday's post for a continuation of today's topic and how you can help families who are struggling through the acceptance process.

Thank you to everyone who wrote into the “Surviving the Financial Crunch” post and for sharing your personal experiences regarding the financial hardships we are facing not only as an industry, but also as a nation. Therapists wrote in from across the country: Pennsylvania, New Jersey, South Carolina, and Illinois, voicing individual stories, concerns and frustrations.

For some of you, your unfaltering dedication to EI was heard and is respected. Some of you even shared different ideas regarding HOW to fix the problem(s) in your area and what needs to happen to make things better. Others recommended that therapists leave EI altogether and pursue areas where there is also a need, which of course are many and just as noble. In addition, some readers have already left EI and as one therapist stated simply and honestly, “I hope someday to go back to it (EI) but I have bills to pay”.

Others have shared that these financial woes ARE affecting not only EI but other populations, such as Head Start programs, day cares and nursing homes as well. Not to add salt to the wound, but I also need to share a story.

A close friend of mine works as an OT in our neighborhood school district, which is a large and well respected area for education. At their recent back-to-school meetings they were informed that the district believes they can pay the employees until December, but is not certain that they will be able to past then. The reason why I wanted to share this is that although moving into another venue of speech therapy may be a temporary solution, who knows what the more long term reality may be.

If you are like many of the other millions of Americans out there who have been closely watching the health care debate that has been raging through the country this summer, you may or may not have your own vision of what the solution(s) may be. I, of course, have my own opinion of what needs to happen to improve health care in this country, which could also directly affect EI services for many families who need it; however I would like to open the floor to the readers out there.

Now that we have shared our concerns and know the bitter reality of what is happening to our education, health care and overall economic situations in this country, what should we as a people be advocating for? What does the country need to rebuild our economy and the field of EI which is being threatened as a result? Now that we have identified the needs and problems, let’s talk about the solutions!