Family Perspectives from our Diversity and Inclusion Task Force

February is Black History Month; a full month celebrating all of the incredible historical contributions that Black people and communities have made to our country and to our world. We hope you will join Apraxia Kids during this month (and beyond) and learn from, listen to, and support our Black communities. 

 

Our Diversity & Inclusion Task Force members want to share with you their personal stories about their apraxia stars and apraxia journeys. Join us in learning from these parents about how their experiences may be different than and very similar to your own.

Ashley’s Story

A lot of parents talk about feeling grief when their child is diagnosed with a speech disorder or a disability. My experience was different. I didn’t feel grief; I felt relieved. Finally, we had the words to describe Kipley’s unique speech presentation. We had an answer to give her sister as to why Kipley didn’t communicate or sound like other kids. So no, I didn’t feel sad. I felt free.  

 Hello, my name Ashley and my Apraxia Star’s name is Kipley. Kipley was referred to early childhood intervention at 15 months by her developmental pediatrician. After a few weeks of speech therapy, our SLP encouraged us to look into apraxia. Kipley displayed a lot of the signs of apraxia; vocal groping, inconsistent speech errors, and phrases that would disappear as quickly as they emerged. My husband and I had never heard of apraxia. We were elated when we found the Apraxia Kids website. Finally information, that was digestible and helpful. 

A few months shy of her third birthday we decided to take Kipley to a local SLP who is ASHA certified and has years of experience both diagnosing and treating apraxia. It took 2 visits and 3 hours of testing. In the end, Kipley was diagnosed with apraxia and aphasia. This journey has been filled with ups and downs but we love our girl so much and we wouldn’t change a thing.

Charmaine’s Story

Our story began like many others. After an eventful pregnancy, I gave birth to a healthy 9 lb 15 oz girl. Our sweet Aliya progressed as all the charts said she should, met all the milestones, gained weight and height toward the top of the charts, and started walking right on time. At around ten months, she began to say “nya” very clearly; since we had a dog named Nya, it was a natural first word for her. We were always complimented on what a quiet baby she was. In hindsight, we realized that she was too quiet, never really cooing or babbling like most other babies. 

Over the next few months Aliya gained only one word “dada.” We were lucky that we had amazing teachers Mrs. P and Mrs. K who were watching our child and noticing the same. I sat down with her wonderful teachers and we agreed that she should undergo speech screening. In January 2018, I received the results of Aliya’s speech screening. Our Speech Pathologist said, “I think your daughter has apraxia; she needs a full evaluation immediately.” I’m not sure I heard anything she said after that. I was frantically googling while she was speaking. What is apraxia? Would she be okay? What did this mean for her, for us, for her future? Would she ever speak? As I read the Apraxia “checklist,” I realized that she met every single mark. I will never forget the tears and hopelessness of that day. That night, after researching the type of therapy Aliya would need, I came up with a plan. 

Then we were dealt our second big blow: most insurance companies deem this condition a “habilitive” or developmental delay, meaning that our child never had the skill, therefore, she can’t receive rehab to regain it—or if it is developmental, she will grow out of it and we should refer to our school system for assistance. Calling every government agency I could, I was told every excuse: she’s too young, she’s too old; you earn too much, you already have insurance, and my favorites, “We have a ten-year wait list” or “We have closed our waitlist because we have no idea when we will reach the end;” they all ended with the same remark: “We can’t accept Aliya.”

The first 2 years were the hardest, loneliest, and most frightening years of my life. I can’t help wondering, does she have friends? How was her day? Do kids pick on her? What is school like for her? We have good days and bad days; some are truly unbearable. Aliya is lucky, she has my husband and I, two adoring sisters, and a community of teachers, family, and friends who love and support her; But some days are still disheartening. We are 3 years since her diagnosis and I can say that Aliya is making great strides. She’s gaining confidence, she’s getting used to speech and occupational therapy. We were able to find her an inclusive daycare that tailor to her needs and teachers who do everything possible to support her. I understand that I am fortunate to have had a diagnosis early and teachers who were able to support me in finding a SLP that would test her at such a young age. Going through this experience and the rollercoaster of the emotions involved, I became determined to raise awareness in my community to make a difference. So that other families, many without the support my family has, will not feel as lost and alone. This is why this is so important to me. Apraxia rockstars truly suffer in silence and that is why it should be important to you, as these children need all of us to help them find their voice.

Rachel’s Story

My name is Rachel and my son is 5 years old. In June of 2018, he was officially diagnosed with childhood apraxia of speech (CAS) by a Speech-Language Pathologist (SLP). It was around the age of 1 year old, I noticed that my son was not as verbal with his communications as he should be. I knew this because he has 2 older siblings and at 1 year old, I clearly remember the things they were saying, and he was not. He was not saying what typical 1-year old would say – “No, Mine, up, please, etc. I said to myself, “He is taking his time to talk. It will come.” Then 2 years old came and he was still not communicating as he should. He was still in that “baby talk” stage of babbling. 3 years old…same thing. My husband and I become more concerned with what could be going on with our son and his lack of communication.

Our journey to apraxia started in September 2017, when we reached out to our county’s Infant and Toddler Program for help. My son was assessed, and it was determined that he was functioning below normal limits of development in the domains of specific developmental areas. We began in home sessions with him via the Infant and Toddler Program where a Speech-Language Pathologist and Education Specialist would come to our home for a total of 2 hours a month – two 1-hour sessions working with him on social communication skills and language/articulation. I was surprised that this was all the time that could be offered to our son given the fact that he was below normal in language/speech and social skills (per their assessment). I assume it is due to a lack of resources that we could only be offered 2 hours a month of service from the county. We continued with the home services for a year, but my husband and I knew that our son would need more assistance.  We decided in June of 2018 to take our son (3 years, 3 months) to Children’s National Medical Center in Washington, DC for further evaluation. 

We scheduled an evaluation with Children’s where he was evaluated by a Clinical Psychologist. During the assessment, my son was asked to participate in various activities, provide eye contact and respond to various commands. Keeping in mind that he was 3 years old, he did not respond to everything that was said to him.  It’s not to say that he could not do it, but just realizing and knowing that he was a 3-years old child.  I honestly feel that evaluators tend to forget that and go on their assessments based on a standard that 9 times out of 10 is not applicable to everyone.  After spending 1.5 hours with my son and taking notes and producing a 30-page report about a week later, the Clinical Psychologist determined that my son met the criteria for Autism Spectrum Disorder.  I did not agree with her diagnosis because I knew my son well enough to know that he did not have the characteristics of a child with Autism.  I know my child and what she was describing (textbook diagnosis) was not my son.  She got it wrong.  I refused to allow her to label my child with an improper diagnosis.  I was devastated by what Children’s relayed to me, but I didn’t believe what was said to me because I knew my son better than her spending 1.5 hours would ever say.

I recall talking to a co-worker one day and shared with her my concerns, sadness about my son’s communication challenges and the diagnosis I received from Children’s.  She told me that she had a friend who was facing the same issues with her son and was receiving therapy sessions from a private company in my area. I called them immediately to see if my son could be seen. He was put on a waitlist and later able to start sessions. My son met with an SLP who began working with him and doing her own assessment.  I had provided the SLP the report that Children’s created and the SLP read it.  After a couple of sessions, she determined that my son was not on the Autism Spectrum Disorder and disagreed with the report from Children’s.  The SLP determined that my son was 100% childhood apraxia of speech (CAS).  I had no idea what CAS was, so I looked it up.  As I read the characteristics of CAS, I knew this was the correct diagnosis for my son.  What was described was exactly what my son demonstrated when it came to his communications. 

In January 2019 at the recommendation of our county’s Infant and Toddler Program, we enrolled our son in our neighborhood’s local public school Early Childhood Center. He was a part-time student, attending 4 days a week from 9:30am – 12pm. He loved his class and teachers. The staff was great, but the hours were inconvenient. I asked why the hours were so and was told that it was the county’s decision. My husband and I work full-time outside of the home.  We had to make requests with our employers to accommodate the school schedule which is not always easy to do. Because of the part-time school schedule, we still had to pay for daycare expenses which could have been eliminated if our son was in school on a full-time basis Monday – Friday. I had been told by the school’s Administrators that students who require more needs due to the severity of their conditions are serviced at the school on a full-time basis. While my son’s needs may not be as severe as others, they are still needs and he still has an official diagnosis of a disability. It was at that moment I knew that the journey with the county public school system was not going to be an easy one.  It was at that moment I realized and felt the disparities of service.  It was at that moment I knew that my husband and I would have to go above and beyond to get the help our son needed with his speech and communications.  My son’s speech improvement will not happen overnight. He is making tremendous progress, but it will take time and a lot of speech therapy and specific treatment methods for him to rise above below normal standards.  It is recommended that he receive at least 3-5 therapy sessions a week.

Today, as of February 2021, my son is a thriving Kindergartner in the public school system within our county.  I was hesitant and a little pessimistic in terms of what my local county school would do to support my son’s needs – especially during a pandemic.  To my surprise, I am pleasantly thrilled with the support he is receiving.  He has an amazing team in place which includes a Special Educator, SLP and Occupational Therapy Specialist.  The team is so dedicated to my son and we have seen tremendous progress.  In addition to his school support, he also receives services from a private SLP who has been working with him since 2019.  Because of these amazing and dedicated Special Educators, my son is coming along day by day with his speech and communications.  It truly takes a village and a strong support system.

As our journey continues, these are the take-aways I want you to consider from our experience:

  1. You, as the parent or guardian, know your child best.  Don’t believe every assessment you receive.  Challenge what you do not agree with and get multiple opinions. 
  2. Always be an advocate for your child.  Be their voice and stand for them and with them.
  3. Once you receive a diagnosis – study and do your research.  Educate yourself on resources, organizations, activities, and support groups.  Get involved and promote awareness.  Communicate and network!
  4. Hold your medical insurance company accountable to the services they should be covering for your child.  Make sure that your diagnosis is coded as a disability.  Otherwise, you may run into issues of claims being denied.  Do your research with your insurance company and the coverage they provide for services your child needs – unlimited services if possible.

Victoria’s Story

Hello, beautiful people and my name is Victoria. I’m a mother of three beautiful daughters and how I connect with the Apraxia Community is that my youngest daughter, Avah, was diagnosed last year. It has been a struggle especially for me because I’ve never heard of this disorder within the black community. We are taught at a young age to pray without ceasing when we have problems that we can’t control. Yes, praying is something I do every day while on this journey, but I knew something was different about Avah than her other two sisters so I did the research. I’ve learned through this experience that as a black woman I would need to be more vocal and stay on top of her wins and losses. Because of my skin color, I would be overlooked by any physicians that may assume that I’m overreacting or just be negligent. 

I can remember me taking Avah to her first therapist – she was a young Caucasian woman who told me she needs a lot of speech therapy because she was so far behind at the age of two – but because Avah was so clingy and would cry every session [her SLP] couldn’t handle her and told me to come back once Avah got older. I knew she only felt this way because of my daughter’s skin color because the other kids she worked with didn’t look like her and were acting the same way and weren’t turned away or dismissed. I immediately found Avah another therapist who takes her time with her and understands her feelings. 

Fast forward to today – when I go to her check-ups or IEP meetings I make sure I carry notes from over the course of time and information that I have researched myself just so I know that I can get every answer that I need. It also lets them know that they won’t just push me out the door without addressing my every concern. I believe that Black History is more than just one month out of the year. I believe we all should do our part to include every demographic background especially because at this time we are already a divided country. We need to learn how to love more and show more empathy and compassion to other people’s struggles that we may not go through daily and hate less.

February is Black History Month; a full month celebrating all of the incredible historical contributions that Black people and communities have made to our country and to our world. We hope you will join Apraxia Kids during this month (and beyond) and learn from, listen to, and support our Black communities. 

 

Our Diversity & Inclusion Task Force members want to share with you their personal stories about their apraxia stars and apraxia journeys. Join us in learning from these parents about how their experiences may be different than and very similar to your own.

Ashley’s Story

A lot of parents talk about feeling grief when their child is diagnosed with a speech disorder or a disability. My experience was different. I didn’t feel grief; I felt relieved. Finally, we had the words to describe Kipley’s unique speech presentation. We had an answer to give her sister as to why Kipley didn’t communicate or sound like other kids. So no, I didn’t feel sad. I felt free.  

 Hello, my name Ashley and my Apraxia Star’s name is Kipley. Kipley was referred to early childhood intervention at 15 months by her developmental pediatrician. After a few weeks of speech therapy, our SLP encouraged us to look into apraxia. Kipley displayed a lot of the signs of apraxia; vocal groping, inconsistent speech errors, and phrases that would disappear as quickly as they emerged. My husband and I had never heard of apraxia. We were elated when we found the Apraxia Kids website. Finally information, that was digestible and helpful. 

A few months shy of her third birthday we decided to take Kipley to a local SLP who is ASHA certified and has years of experience both diagnosing and treating apraxia. It took 2 visits and 3 hours of testing. In the end, Kipley was diagnosed with apraxia and aphasia. This journey has been filled with ups and downs but we love our girl so much and we wouldn’t change a thing.

Charmaine’s Story

Our story began like many others. After an eventful pregnancy, I gave birth to a healthy 9 lb 15 oz girl. Our sweet Aliya progressed as all the charts said she should, met all the milestones, gained weight and height toward the top of the charts, and started walking right on time. At around ten months, she began to say “nya” very clearly; since we had a dog named Nya, it was a natural first word for her. We were always complimented on what a quiet baby she was. In hindsight, we realized that she was too quiet, never really cooing or babbling like most other babies. 

Over the next few months Aliya gained only one word “dada.” We were lucky that we had amazing teachers Mrs. P and Mrs. K who were watching our child and noticing the same. I sat down with her wonderful teachers and we agreed that she should undergo speech screening. In January 2018, I received the results of Aliya’s speech screening. Our Speech Pathologist said, “I think your daughter has apraxia; she needs a full evaluation immediately.” I’m not sure I heard anything she said after that. I was frantically googling while she was speaking. What is apraxia? Would she be okay? What did this mean for her, for us, for her future? Would she ever speak? As I read the Apraxia “checklist,” I realized that she met every single mark. I will never forget the tears and hopelessness of that day. That night, after researching the type of therapy Aliya would need, I came up with a plan. 

Then we were dealt our second big blow: most insurance companies deem this condition a “habilitive” or developmental delay, meaning that our child never had the skill, therefore, she can’t receive rehab to regain it—or if it is developmental, she will grow out of it and we should refer to our school system for assistance. Calling every government agency I could, I was told every excuse: she’s too young, she’s too old; you earn too much, you already have insurance, and my favorites, “We have a ten-year wait list” or “We have closed our waitlist because we have no idea when we will reach the end;” they all ended with the same remark: “We can’t accept Aliya.”

The first 2 years were the hardest, loneliest, and most frightening years of my life. I can’t help wondering, does she have friends? How was her day? Do kids pick on her? What is school like for her? We have good days and bad days; some are truly unbearable. Aliya is lucky, she has my husband and I, two adoring sisters, and a community of teachers, family, and friends who love and support her; But some days are still disheartening. We are 3 years since her diagnosis and I can say that Aliya is making great strides. She’s gaining confidence, she’s getting used to speech and occupational therapy. We were able to find her an inclusive daycare that tailor to her needs and teachers who do everything possible to support her. I understand that I am fortunate to have had a diagnosis early and teachers who were able to support me in finding a SLP that would test her at such a young age. Going through this experience and the rollercoaster of the emotions involved, I became determined to raise awareness in my community to make a difference. So that other families, many without the support my family has, will not feel as lost and alone. This is why this is so important to me. Apraxia rockstars truly suffer in silence and that is why it should be important to you, as these children need all of us to help them find their voice.

Rachel’s Story

My name is Rachel and my son is 5 years old. In June of 2018, he was officially diagnosed with childhood apraxia of speech (CAS) by a Speech-Language Pathologist (SLP). It was around the age of 1 year old, I noticed that my son was not as verbal with his communications as he should be. I knew this because he has 2 older siblings and at 1 year old, I clearly remember the things they were saying, and he was not. He was not saying what typical 1-year old would say – “No, Mine, up, please, etc. I said to myself, “He is taking his time to talk. It will come.” Then 2 years old came and he was still not communicating as he should. He was still in that “baby talk” stage of babbling. 3 years old…same thing. My husband and I become more concerned with what could be going on with our son and his lack of communication.

Our journey to apraxia started in September 2017, when we reached out to our county’s Infant and Toddler Program for help. My son was assessed, and it was determined that he was functioning below normal limits of development in the domains of specific developmental areas. We began in home sessions with him via the Infant and Toddler Program where a Speech-Language Pathologist and Education Specialist would come to our home for a total of 2 hours a month – two 1-hour sessions working with him on social communication skills and language/articulation. I was surprised that this was all the time that could be offered to our son given the fact that he was below normal in language/speech and social skills (per their assessment). I assume it is due to a lack of resources that we could only be offered 2 hours a month of service from the county. We continued with the home services for a year, but my husband and I knew that our son would need more assistance.  We decided in June of 2018 to take our son (3 years, 3 months) to Children’s National Medical Center in Washington, DC for further evaluation. 

We scheduled an evaluation with Children’s where he was evaluated by a Clinical Psychologist. During the assessment, my son was asked to participate in various activities, provide eye contact and respond to various commands. Keeping in mind that he was 3 years old, he did not respond to everything that was said to him.  It’s not to say that he could not do it, but just realizing and knowing that he was a 3-years old child.  I honestly feel that evaluators tend to forget that and go on their assessments based on a standard that 9 times out of 10 is not applicable to everyone.  After spending 1.5 hours with my son and taking notes and producing a 30-page report about a week later, the Clinical Psychologist determined that my son met the criteria for Autism Spectrum Disorder.  I did not agree with her diagnosis because I knew my son well enough to know that he did not have the characteristics of a child with Autism.  I know my child and what she was describing (textbook diagnosis) was not my son.  She got it wrong.  I refused to allow her to label my child with an improper diagnosis.  I was devastated by what Children’s relayed to me, but I didn’t believe what was said to me because I knew my son better than her spending 1.5 hours would ever say.

I recall talking to a co-worker one day and shared with her my concerns, sadness about my son’s communication challenges and the diagnosis I received from Children’s.  She told me that she had a friend who was facing the same issues with her son and was receiving therapy sessions from a private company in my area. I called them immediately to see if my son could be seen. He was put on a waitlist and later able to start sessions. My son met with an SLP who began working with him and doing her own assessment.  I had provided the SLP the report that Children’s created and the SLP read it.  After a couple of sessions, she determined that my son was not on the Autism Spectrum Disorder and disagreed with the report from Children’s.  The SLP determined that my son was 100% childhood apraxia of speech (CAS).  I had no idea what CAS was, so I looked it up.  As I read the characteristics of CAS, I knew this was the correct diagnosis for my son.  What was described was exactly what my son demonstrated when it came to his communications. 

In January 2019 at the recommendation of our county’s Infant and Toddler Program, we enrolled our son in our neighborhood’s local public school Early Childhood Center. He was a part-time student, attending 4 days a week from 9:30am – 12pm. He loved his class and teachers. The staff was great, but the hours were inconvenient. I asked why the hours were so and was told that it was the county’s decision. My husband and I work full-time outside of the home.  We had to make requests with our employers to accommodate the school schedule which is not always easy to do. Because of the part-time school schedule, we still had to pay for daycare expenses which could have been eliminated if our son was in school on a full-time basis Monday – Friday. I had been told by the school’s Administrators that students who require more needs due to the severity of their conditions are serviced at the school on a full-time basis. While my son’s needs may not be as severe as others, they are still needs and he still has an official diagnosis of a disability. It was at that moment I knew that the journey with the county public school system was not going to be an easy one.  It was at that moment I realized and felt the disparities of service.  It was at that moment I knew that my husband and I would have to go above and beyond to get the help our son needed with his speech and communications.  My son’s speech improvement will not happen overnight. He is making tremendous progress, but it will take time and a lot of speech therapy and specific treatment methods for him to rise above below normal standards.  It is recommended that he receive at least 3-5 therapy sessions a week.

Today, as of February 2021, my son is a thriving Kindergartner in the public school system within our county.  I was hesitant and a little pessimistic in terms of what my local county school would do to support my son’s needs – especially during a pandemic.  To my surprise, I am pleasantly thrilled with the support he is receiving.  He has an amazing team in place which includes a Special Educator, SLP and Occupational Therapy Specialist.  The team is so dedicated to my son and we have seen tremendous progress.  In addition to his school support, he also receives services from a private SLP who has been working with him since 2019.  Because of these amazing and dedicated Special Educators, my son is coming along day by day with his speech and communications.  It truly takes a village and a strong support system.

As our journey continues, these are the take-aways I want you to consider from our experience:

  1. You, as the parent or guardian, know your child best.  Don’t believe every assessment you receive.  Challenge what you do not agree with and get multiple opinions. 
  2. Always be an advocate for your child.  Be their voice and stand for them and with them.
  3. Once you receive a diagnosis – study and do your research.  Educate yourself on resources, organizations, activities, and support groups.  Get involved and promote awareness.  Communicate and network!
  4. Hold your medical insurance company accountable to the services they should be covering for your child.  Make sure that your diagnosis is coded as a disability.  Otherwise, you may run into issues of claims being denied.  Do your research with your insurance company and the coverage they provide for services your child needs – unlimited services if possible.

Victoria’s Story

Hello, beautiful people and my name is Victoria. I’m a mother of three beautiful daughters and how I connect with the Apraxia Community is that my youngest daughter, Avah, was diagnosed last year. It has been a struggle especially for me because I’ve never heard of this disorder within the black community. We are taught at a young age to pray without ceasing when we have problems that we can’t control. Yes, praying is something I do every day while on this journey, but I knew something was different about Avah than her other two sisters so I did the research. I’ve learned through this experience that as a black woman I would need to be more vocal and stay on top of her wins and losses. Because of my skin color, I would be overlooked by any physicians that may assume that I’m overreacting or just be negligent. 

I can remember me taking Avah to her first therapist – she was a young Caucasian woman who told me she needs a lot of speech therapy because she was so far behind at the age of two – but because Avah was so clingy and would cry every session [her SLP] couldn’t handle her and told me to come back once Avah got older. I knew she only felt this way because of my daughter’s skin color because the other kids she worked with didn’t look like her and were acting the same way and weren’t turned away or dismissed. I immediately found Avah another therapist who takes her time with her and understands her feelings. 

Fast forward to today – when I go to her check-ups or IEP meetings I make sure I carry notes from over the course of time and information that I have researched myself just so I know that I can get every answer that I need. It also lets them know that they won’t just push me out the door without addressing my every concern. I believe that Black History is more than just one month out of the year. I believe we all should do our part to include every demographic background especially because at this time we are already a divided country. We need to learn how to love more and show more empathy and compassion to other people’s struggles that we may not go through daily and hate less.



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