My Story
Welcome and thank you for your interest to get to know me better.
Each Chapter has ONE Chapter Links Page to all the links underlined in that chapter..
Journey With Us Out of Homework Hell & through the IEP Process.
Prelude
Hi, my name is Mimi Somsanith.
I am different.
You’ll sense and see that. When there are differing opinions and even opposing viewpoints, there is not one that is absolutely correct in entirety.
I’m not an expert. If you’re looking for someone with all the correct answers or a ‘professional advocate’, that’s not me.
I’m a strong advocate for my daughter from my daughter's perspective. My passion is to share successes, step by step and in as real time as possible, in our educational endeavor such as looping learning and IEP strategies for others to benefit from our experience.
This is a live journey. There’ll be mistakes from yours truly. And, we’ll experience growing pains together.
My daughter is Alice Somsanith. She was born with Down syndrome and is blossoming beyond boundaries.
Let’s get into Homework Heaven and through the IEP process empowered with empathy.
Journey with us. You can. We hope you will!
Sincerely,
Mimi Somsanith
By Mimi Somsanith
Table of Contents
In raising my daughter with delays, I focused on these developmental priorities in this order to address my daughter’s needs and development. There was no way for a single parent like me to figure out and obtain services for all of my daughter’s needs all at once. Nor should I because my daughter, Ally, is a human being who could only handle so much at a time. I’m raising a happy and healthy daughter who continues to have a happy and healthy relationship with me. This starts by ensuring her with adequate stimulation on a daily basis, not too much and not too little. This is my recipe for a happy and healthy life even when life throws us a curveball. When she matures, a healthy upbringing would lead to a meaningful adult life.
Focused Order of Developments From Birth Through 8 Years Old:
Before Ally was born, I was financially set and could make time for whatever interested me. That can be expected from an educated independent woman. I never once had to think about my rights, or the thought of having rights, as an individual let alone fight for my rights in any regards.
When Ally was rejected at age three to be enrolled in a school, I knew her life would not be full of acceptance. Nonetheless, I was hopeful because this society has opportunities. When Ally nearly got kicked out of a private school for toileting accidents, she received 1:1 wraparound services. Personalized social stories I created about toileting and school routines helped but 1:1, one on one, adult support was required and still required at age eight. The journey of raising a child born with special needs so far has been more difficult than I had hoped for. The journey can drain the body, the mind, and the soul. I continue to be hopeful but am less optimistic as I’m encountering more roadblocks and realizing more limitations in our experiences.
As I’ve learned from being in the special needs world, “one person’s story can be another’s survival kit.” Here is my story. May you find more joys than sorrows in reading it, relating to it, and in your own life’s journey. Life is simple but people can make it complicated.
I did not receive the news that she was born with Down Syndrome until seven weeks after Ally was born. Like many doctors, Ally’s pediatrician, a caring and kind one, wasn’t well trained in delivering such news but was helpful in providing a list of resources. I was in shock and froze in my seat when I received the news. Googling “Down Syndrome” was not a good idea but I didn’t know anyone with Down Syndrome. The more I read, the more I dreaded. I started calling phone numbers on the resource list and began “the process” of receiving services that a child with Down Syndrome would need in order to stay alive, live and develop.
As I was making many calls trying to understand what all the services entail, I received a surprised visit and a Beautiful Beginnings gift basket from two moms whose children were also born with Down Syndrome. Their presence made a difference for me that merged the world I knew with the world of special needs. After their visit, I no longer felt that I was alone. Even though I handled everything for Ally’s special needs myself, I didn’t feel alone. The feeling of not being alone gave me the strength to charge forward without hesitations. The memory of Christa Ventura and Kelsey Mango visiting me would still bring tears to my eyes. They’ll never know the priceless and permanent impressions they have made on me. Though I wasn’t in touch with them often, I felt that I had at least two people to reach out to should I ever need guided directions on services for Ally. Having a last resort provided a level of needed comfort when everything seemed uncomfortable and unfamiliar.
The mind hurts as much as the heart when I learned that my daughter was born with Down Syndrome. Fortunately, I received the best and simplest reply when I shared the news with a dear friend. Sharing the news that I have a daughter born with Down Syndrome has continued to be a message I need to build confidence in delivering due to the often unfavorable reactions from people in my experience. When I shared the news with a dear friend, as my voice was shaking, that Ally was born with Down Syndrome, he said over the phone, “just love her”. Even though it was over the phone, I can see him give a shrug thinking like what’s the big deal. He was absolutely accurate. Ally’s my daughter so just love her. That single simple reply instantly wiped out all of my fears of what raising a child with Down Syndrome could be like. There were no longer apprehensions, just me willing to tackle each step along the way despite not knowing anything about special needs. Those words mentally and emotionally geared me up ready to be a mom.
Well, I didn’t know how to be a mom, at first, because I didn’t have mom friends and wasn’t around kids often in my adulthood. Ally would breathe so loudly that I could hear her from anywhere in the house. No baby monitor was needed. The loud breathing stopped after six months as doctors had explained. As time went by, there would always be something next to master as a mom in caring for an infant. I had Ally help me by giving her two options on most things so she would be the one making decisions instead of me, from which activity to which food to eat. Making every little decision sometimes involved second guessing which was tiring. Giving Ally choices began what I consider to be my top parental duty to her. That is, to teach Ally to be able to make good decisions for herself.
Within a year, I got the hang of the constant juggle in parenting. Being a single mom became easy for me. Singing and being playful with Ally was natural for me. And when she was physically on me, able to hear my heartbeat, I trained myself to calm my breathing even through desperate moments. Raising Ally has been the joy I anticipated when I wanted to have a child despite Ally’s medical issues and then struggles with schools.
Chapter 5:
During the first year of Ally’s life, other than constantly figuring out and addressing her medical conditions, Ally began all her therapies around six months old. The application process and waitlist was daunting. I’ve entered the special needs world without a map and was navigating blindfolded. It was a see as I go program for me. I had no one’s input, only my own impressions to rely on. There were lots of decisions, hard decisions, to be made frequently. I agreed to one medical procedure that I learned was unnecessary and was traumatizing to my daughter when she was only months old. It was so dramatic that the doctor advised my mother, Ally’s grandmother, not to enter the procedure room. From that, I learned not to agree to everything and not to anything recommended by medical professionals unless I understood enough of it and considered it beneficial to Ally.
For a child born with Down Syndrome, there would be so many tests, procedures, and recommendations given to a parent even when the child was not yet even months old. The medical community has to cover their own liability in their advice to patients. Parents often agree out of fear, fear of the unknown, and fear of the possibilities of not catching or correcting something in time. In my case, I was unaware of aspiration. A swallow study was mentioned to me casually as part of a long list of recommendations. No one noticed the signs of aspiration as an immediate need for urgent medical attention and I had no clue what aspiration was. It was just another item on my list of lists to consider for a child born with Down Syndrome.
Chapter 6:
Being a single parent of a child with special needs meant I had to do it all by myself financially, physically, mentally, and emotionally. Though my close relatives could lend a hand here and there with some time and tasks, Ally had no other guardian who could help shoulder the responsibility of parenting a child with special needs with me to constantly review her list of needs by priority and quickly so that a situation like aspirating won’t happen again. The pressure was on so I had to get more organized and gain prioritized perspective asap.
The list for me became simpler as I adjusted quickly to the life of a single parent of a child with delays. First, I focused on her emotional and mental needs when I’m with her. Being present will always matter most to any two individuals when together. This is the essence of having a relationship, not just being related. Ally would always feel that I was present whether it’s by my voice across the room, or a quick glance as I’m bringing the laundry up and down the stairs passing her, or when we’re playing together. Car rides have provided many delightful moments for our bonding. Whether out or at home, electronics would not interrupt us. As a mom, this would be easy for me.
Before age three, in addition to tough therapy sessions, Ally had numerous surgeries, studies, and treatments including hospitalization for atypical pneumonia due to aspiration. Life was oftentimes terrifying when it was full of the unknown that can suddenly creep up at any time. Even though I understood that Ally would have trouble in what seems like all areas of development, I couldn’t think about anything in her future such as her speech. During her toddler years, I was wondering if she would be able to walk when I saw her struggled moving in her leg braces. I would think to myself, if she could only just walk it wouldn’t be necessary if she could run. Prayed. No matter how I prayed or researched, there would be one fear I could not shake off, even now and probably forever. That is, the thought and possibility that Ally would not be able to - drink. When she drinks, even now, I am happy. One day, I’ll tell her that I’m happy simply because she can drink. Of all the reasons in the world, this would be a topper. This is too emotional of a topic for me to create a video on at the time of writing my story when Ally is eight years old.
I began writing after a behaviorist asked, “have you ever thought about writing a book” to share so many effective strategies to help others? I replied “No, but I am working on sort of an online course full of videos to demonstrate step by step how to create what I created for Ally to learn from preschool through Grade 2.” If I could share how to get out of homework hell, I would be able to save lots of parent-child relationships. But first, I would have to get completely out of homework hell myself. I began the journey out of homework hell thanks to inspiration from Dr. Peg Dawson's lecture on executive skills at an annual PDE, PA Department of Education, conference and the research that followed.
Back to Ally,...
Chapter 8:
It wasn’t until after Ally turned three years old that her medical conditions improved enough for her to be out of the red. This was a huge relief because lacking good physical health consumes daily life like no other poison.
After excelling motherhood, I had to practice being a therapist, as all therapists combined, to my daughter since she was months old. There would be speech therapy, occupational therapy, physical therapy, then later social therapy and behavioral therapy. Perhaps there may be more that I haven’t yet discovered. Each therapy, of course, has its own specialties and requirements. I had to learn enough about them all and in cliffnotes style and be effective because I was invested in Ally’s developments. Each therapy session wasn’t just a step in the right direction or a timed session for me.
Many therapists were talented. Interestingly, though some areas of developments overlap, therapists would be hesitant to provide suggestions in other areas. Perhaps, it’s due to liability or just a lack of certainty to share. Because I was practicing to be all therapists, I would have a hard time differentiating different areas of therapies. For example, a speech therapist may not successfully work with Ally for not knowing how to gain Ally’s interest and attention. It would be a behavioral therapist who would be required to develop interventions for behavioral compliance. Or, an occupational therapist may not successfully work with Ally for not knowing how to speak to her in a way that she would listen and understand. It would be a speech therapist who would be required to develop language instructions to support Ally’s ability to process information. Being her all-therapist wasn’t easy but it was part of the skills required for a parent of a child with delays. No amount of therapies alone without parental involvement could benefit a child to develop to their potential or even to a point of adequacy. I would share this to people who thought “that’s what therapies are for” thinking a child would develop fully with just (weekly) therapy sessions.
I was laid off when Ally was a toddler. It was scary because I knew I wouldn’t be able to return to a corporate job holding down a forty-plus hours work week with the therapies and medical schedules, let alone be facing uphill battles with school later on. It was scary financially but it was fortunate in regards to time because I would be able to better support my daughter’s needs. We just had to be poor. Lots of cardboard activities.
Ally is a happy person not because she was born with Down syndrome. She’s an intrinsically motivated person developing a strong sense of self-esteem. We are truly happy people and happy together. This is a result of me being present in our relationship. Ally has always been present because she’s young and looking to and needing my attention. We would always focus on our mental and emotional state. That came before addressing any concerns we had whether it would be regarding a behavior, skill or situation.
Some people had warned me about the terrible twos. Kids are known to throw tantrums when they turn two years old. Ally didn’t have those tantrums at age two or any age. She did display tantrum-like attitudes and expressions which could be easily missed and go unnoticed because they were so sudden and brief. I had asked a behaviorist if Ally could skip the teenage tantrums as she had skipped the terrible twos. The response was “no” but we’ll see. I’m hopeful as I’ve been able to successfully keep our relationship on track, emotionally and mentally, by being present. When asked about our relationship, I would describe to people that we’re in love with our relationship. This would include trust and respect that I intend to keep on track through Ally’s teenage years. I’m looking forward to facing the teenage challenges with her rather than dread it from coming. You can journey with us to see which way Ally’s teenage years will go, either co-regulated with me or the tear will be inevitable as part of a parent-child developing relationship.
Chapter 10:
After adequately focusing on our mental and emotional state, Ally’s occupational and physical therapies were next on my list to focus on. I was once worried that Ally’s feet rubbed against her orthotics leaving some pink marks and how her orthotics would be too hot, too cold, or too uncomfortable somehow for her to wear all day long. A physical therapist’s remarks about how some kids can’t ever walk without orthotics rightfully reset my perspective. The thought of Ally not being able to walk in her lifetime was a frightening one. No one was able to give me an estimate or confirm that she would be able to walk only that she could through developing her core muscles and wearing orthotics. I did not sense certainty in any responses and no words of certainty were used. Sometimes in her life, there will be discomfort that Ally would have to endure in order to overcome her struggles and achieve her developmental goals. Ally has already worked a thousand times harder than I ever had growing up as a child. She’s not an adult at the time of writing this story, but my role, as I understand it, would only become more difficult and life would become more challenging. Fortunately, I feel somewhat prepared in some aspects. And, I will share with you how I’m prepared in various aspects of our lives from emotional, mental, physical, social, behavioral, academic, to executive skills despite Ally’s delays in all areas.
Because walking, and not walking well, was noticeable to people, I focused more on her gross motor skills than I did on her fine motor skills. Ally had plenty of fine motor skill activities at home that she thoroughly enjoyed repeatedly so I wasn’t as concerned with her fine motors development. Treadmill training was necessary for Ally in order to make adequate gross motor skill improvements. Taking Ally to her weekly outpatient therapies was routine for me. This would be on top of Ally having six therapy sessions each week at school. Though all therapies are supposedly fun and through play, they are all very hard work for Ally. And, she’s been working very hard since months old. Let that sink in for a moment. Have empathy. Have empathy for her. Have empathy for all people with delays.
Chapter 12:
After age four, my focus shifted to Ally’s severe speech and language delays because there has been significant progress made in her fine and gross motor skills. How did I decide when to shift my focus? I did not have a timeframe in mind or put a time limit in any area of my focus. I only had a goal I wanted us to reach before shifting to invest more time in other priorities. There was no way I would have been able to manage to stay on top of each and every delay. Unfortunately, when I focused on Ally’s speech and language delays, I realized that her therapies in the past years have had barely any progress. I paid attention when she began speech therapy but not after she turned three years old and had entered the next program of services. The 0-3 years old program involved parents because it would be in the home. The 3-5 years old program doesn’t involve parents if at daycares or schools. Ally began daycare shortly before two years old primarily for social benefits. It was evident there was no progress in Ally’s speech therapies because her goals had not changed for nearly two years. From that, I learned to not rely solely on having therapy services for Ally but to be involved in her therapies even if it wasn’t a therapy on top of my priority list. Otherwise, there could be therapy sessions without any improvements.
Therapists have the best intentions but some cannot be successful without parental involvement. They also tend to be the ones who don’t seek out or welcome parental input. I was disheartened to realize that my daughter has had to put herself through so many speech therapy sessions at school without making improvements. What a total waste of time and unpleasant hard work for Ally to have had to put up with. I felt so sorry for my daughter when I discovered that. I requested and received another speech therapist. Let that sink in for a moment. On top of a child being pushed to comply during therapy sessions that weren’t successful, the child has lost all those opportunities in which she could’ve made progress with another therapist. Have empathy. Have empathy for Ally. Have empathy for all people with delays.
Guilt kicked in and I went into high gear on figuring out how to not just make up for lost opportunities but also to figure out how to ensure short term and long term success regarding Ally’s speech and language delays. As I’ve had success with outpatient physical therapy at CHOP, I returned to seek outpatient speech therapy. At age four, Ally was diagnosed at a neurotypical two year old’s level. She couldn’t answer simple yes and no questions. She didn’t understand the words “you” and “me.” All I wanted for that Christmas was for Ally to be able to answer yes and no questions accurately. I didn’t get my wish until the next year.
For example, Ally may be advanced in scissor cutting in Pre-K but can’t hold some everyday items properly. Ally’s developments, in some instances such as this, skipped some steps that are under or not yet developed. I think this was the case, and would continue to be the case, because Ally’s developments depend highly on what she’s interested in. Those underdeveloped skills are skipped because there has been a lack of interest for Ally in activities that would develop those skills and no goals have been set by professionals or me to achieve them.
Chapter 14:
Some people may think that I constantly push Ally to develop many of her skills without knowing the fact that I capitalize on Ally’s interests. Ally learned and developed well through play and activities I created and made opportunities for. This was how I taught Ally since birth. Ally’s an astute learner who enjoys hands-on activities. Whatever Ally liked, enjoyed, and took interest in, I would incorporate ways for her to learn with those toys or during those activities. Other than the many therapies, Ally didn’t encounter many unpreferred tasks with me until she attended grade level school. This began what I referred to as our homework hell. It wasn’t until second grade was I able to figure a way out of homework hell. This gave me the justification to believe that I could indeed help other parents. At least try to save them from homework hell if nothing else. My journey out of homework hell was also an impetus for me to begin building my business, LearningPerspective, LLC.
Chapter 15:
After waiting nearly a year for Ally, at age eight, to have her sequential speech evaluation at CHOP, I was happy that Ally’s diagnosis has been downgraded from severe to moderate per the results of her evaluation. Sadly, there would be many and long waitlists for many services which would be just one of many difficulties members in the special needs community face commonly. Though diagnosed as moderate, Ally was indeed severe in her speech and language delays to me in social interactions and communications. Her family members, including myself, and even adults still had a difficult time communicating with her. She was able to answer some closed ended questions but not hold continual coherent conversations at age eight or volley fluently for more than a few minutes. Her 'volley in conversation' goal would be at five minutes.
Since I’ve focused on Ally’s receptive and expressive delays at age four, she has made significant improvements even putting some professionals in awe especially those who have seen her over the years. I have gained the confidence to be Ally’s all-therapist since I discovered that I only needed to practice enough to have a skill become a habit. When Ally was five years old, I asked a behaviorist what she could do to support Ally that I didn’t do during one of her observations. Her response was that I was doing everything she would be doing. At that moment, I realized that I’ve already developed behavioral habits in my interactions with Ally to support her. When a practice becomes a habit, it would no longer be work but an automatic or natural way of being. Not only did I gain confidence but I also acquired all-therapist skills. At times, some therapists would wonder and ask whether I have any background in a field of practice. I don’t. Most of my practiced interactions with Ally had become habits. As instrumental as I am in Ally’s developments, Ally would still require therapy because I and Ally just don’t have the time to practice in all her areas of needs and not all at once. One of my strives for us has always been for me to be a mom more than her therapist, tutor, or anything else to her. Also I’m only good at any current’s moments. I don’t have the expertise or knowledge of next steps.
Having excelled at being Ally’s mom and all-therapist, next I needed to focus on being her tutor. Sure, I teach and am her teacher in many regards especially when I’m able to capitalize on Ally’s interests as she enjoys learning through play from me before she was introduced to those topics in school such as the planets or piano scales or clock but these are few and far in between. Her teachers, her educators, would be the teachers in school. I’m Ally’s tutor.
Ally’s Kindergarten started out virtually due to COVID-19. When grade level school began, I had embarked on a new journey. The struggles of “that IEP mom” are so pervasive and disturbing that there are many support groups just for “IEP”. Each successive grade level has presented more and different IEP challenges for me. An IEP, individualized education program, is complicated for all involved. So much about the IEP process and what’s happening among parents, schools, and professionals would sound unbelievable until I hear enough about it. For anyone who has an IEP or 504, this would be nothing new or shocking. For parents of neurotypical children who have never been in an IEP struggle or uphill battle, the education system may seem to be working and intact. When there’s a chance, anyone who has a relative with an IEP should attend an IEP meeting to see just how rapid the fireworks could be. It would be an eye opener for parents of neurotypical children.
To me, and to many, Lisa Lightner from ADayInOurShoes is “the IEP mom.” From her, you can get a list of all IEP goals, in all areas of needs, and learn the official IEP process, from organizing data to Due Process. She’s also a parent of a child with special needs, a special education advocate, and so much more. I paid for her course, Don’t IEP Alone Academy, even though I couldn't afford it because the education I received was worthwhile and would save me a lot of money down the road whether I would someday require an attorney or not.
It wasn't until I was cornered did I dedicate time to learning from Lisa's videos, at my own pace. Since it's lifetime access, I have lifetime advocacy to specific situations throughout Ally's education, even transitioning into adulthood.
Mimi Somsanith
I’m not an expert but will continue to gain more experience as an IEP mom. I’m an outside of the box thinker so I don’t want to be “that'' IEP mom. I want to be the “other” IEP mom. You will find some diplomatic perspectives in my platform, IEP Process, Interrupt It!, as that is how I hope to be able to continue to sustain manageable relationships with my daughter’s school staff. No matter how livid I was over unbelievable situations, I did not and hopefully won’t ever lose my cool because once the relationships go downhill, I’m learning from others, that it’ll snowball big and fast into a chain reaction that may be extremely difficult to recover from and the child is the one who has the most to lose in IEP battles. School staff may suffer. I suffer. But my daughter would be the one getting hurt. As I continue to have empathy and respect for school staff, I am figuring out ways to improve on mutual strategies to benefit Ally’s education. Overall, people in the education system would want a child to succeed. Aligning priorities and communications is much easier said than done. I’m thankful to have received support and have access to resources, including professionals, in order to continue my research and advocact until Ally graduates with a regular High School diploma.
Chapter 19:
Until then, I’m passionate about sharing my strategies to help you reduce stress, struggles, difficulties, challenges, burdens, sadness, tears and fears in areas of homework and developmental delays. When I tried to find what I needed to create to support my daughter for many specific delays, I wasn’t able to. I had to design and create much on my own. I’m hoping that sharing what I created alongside explaining how each step can be beneficial to a child with delays could support you in your working and personal relationship with your child as it has benefited Ally and me.
Welcome to our journey, together!
The link in each of my story Chapters above will lead you to the corresponding Chapter Links page below.
Leave your email for more free and specific information on how to conquer homework hell and address various areas of developmental delays. You can also share your story or connect with other LearningPerspective members.
LearningPerspective is a platform that delivers step by step demonstrations and instructions on ways to create specific worksheets, visuals, and other tools, how to use strategies, and much more for you and your child as a resource to organize and execute learning, covering preschool to Grade 2, for now. I’m a single mom and an introvert. Thank you for your patience as I’m developing more resources to support you and your child. LearningPerspective, LLC will grow as Ally grows.
You can grow with us! We hope you will!
Author,
Mimi Somsanith
My Story Chapter Links
You can get to each Chapter Links page by clicking on the link in the above corresponding story Chapters.
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Chapter1 Links:
raising my daughter
healthy life
Healthy mentioned here includes emotional health and mental health, not just physical health. Physical health is the least control we have over. Stress is the major aggravator of physical health illnesses. Most stress manifests into physical symptoms stem from our thoughts and emotions. The reverse can also be true though not a guaranteed cure.
When Ally experienced a series of physical bodily infections for nearly a month at age eight, she was able to maintain her emotional and mental health. Even though that did not cure her bodily ailments, the time went by less physically painful because she was not consumed by the sensations or thoughts of her conditions. When treating the infections, we focused on positive thoughts towards recovery and looked forward to the next stages.
Mind over matter is stress management. In order for Ally to practice this, she has to trust me, believe in what I explain, and be willing to let me care for her. When Ally’s scared, I would ask for her permission to let me take care of her, such as pull out a splinter. Her willingness gives her the courage to withstand physical pain which in some cases is accompanied by tremendous mental fear. With many treatments before age three, some fears may take awhile to get rid of or be replaced with courage as new experiences emerge.
was financially set
I wanted a child when I had Ally. I was an older, mature adult so I had successes in many areas of professional & personal developments. I was earning a decent salary as an analyst at corporate jobs. I was able to save some money for my retirement so I don’t qualify for public assistance. Ally has medical assistance because she’s born with Down Syndrome. My retirement savings would not have been enough to financially support Ally’s medical needs. During her first month at the hospital, Ally’s birth, delivery, and NICU stay cost more than half a million dollars. I had to pay a chunk of that out of pocket. We’ve been barely getting by financially but we have a roof over our head and often access to a vehicle. Food, clothing, and supplies were sparse but I was able to make it work through reusing and repurposing. Social events that cost more than twenty dollars would often get skipped. Dollar Tree has helped me survive. I also found JBF sales to be valuable.
When working part time, I barely had time to eat, sleep, and shower. Needless to say, I didn’t have time for self care. However, I was able to manage my stress. The joy of being with Ally made it possible to keep stress as low as possible.
The first major purchase I’ll make when LearningPerspective, LLC becomes profitable or when I could afford it would be for a car.
A driver totaled our car
3am Christmas morning.
The police's bright lights,
rain, & commotion woke
us up. Ally's good at
comforting me, even in
this video.
Chapter2 Links:
rejected
Before Ally entered public school at grade level, Kindergarten, each daycare or school I applied to enroll her came with an onset of gut wrenching anticipation for all sorts of possible rejections. Age wasn’t the only requirement for a child with special needs. For a child like Ally, I would have to work hard for her to 1) get enrolled, 2) get into the building 3) transition into the first classroom 4) remain in her seat or area, which is all before the first class starts, 5) transition in between each room and 6) not elope throughout the course of a day. This would be just one concern involving physical movement. There are tons of other concerns in many other areas of needs. Parents of children with special needs know that the list of concerns can seem never ending.
The struggle for me wasn’t at home but managing Ally’s concerns with the school. After school staff observed her, Ally wouldn’t qualify for private schools such as Montessori schools before age five. Even after she was accepted, there was once a tenured teacher who didn’t think she could teach Ally and stated that Ally belonged in a special school. Faced with many rejections, I started a Facebook page called “Teach Kids Anything” but I couldn’t make the time to maintain it until it aligned with LearningPerspective, LLC. Maintaining Ally’s private Facebook page regularly and posting her public YouTube videos, LearningPerspective, just once a month was already more than I had time to squeeze in for. “Teach Kids Anything” was something I felt that I had to do something or start somewhere; otherwise, more rather than less people in our society would continue to have beliefs such as that tenured teacher. It’s not her fault to have such beliefs. It’s the sad reality of the society we live in.
Even friends and relatives cannot escape the influence of ignorance. What is worse than ignorance in denial are the incorrigible inappropriate fallacies. People don’t know what they don’t know is one thing but also imposing their beliefs without even having experience is unacceptable. Not willing to understand or dismissing Ally’s developmental delays is dismissing part of the person she is.
Before I had Ally, I was unfamiliar with Down Syndrome. I was unaware but not ignorant. There were people in my life including close friends with issues, severe conditions even, but not officially diagnosed with developmental delays. I didn’t feel the need to stay away from people who seemed to have medical illness. To me, even healthy or seemingly kempt people can have all sorts of misery. I don’t judge a book by its cover because I’m a different person from anyone I know. I only have true friends because I’m authentic and don’t fall prey to the pretentious life this society is pressured with. I reject others as much as they reject me. I accept others as much as they accept me.
The rejection Ally will face throughout her life would require her to accept her difference as much as I have accepted mine. The difference between Ally and me is that Ally’s rejection comes almost instant and automatic, if not soon after meeting her, by most neurotypical people, which is a shame. Though Ally is more alike than different as a child and as a person, I think it’s important to celebrate how she’s different. I’m happy with the person I’ve become which includes how different I am from others and would want the same for Ally.
1:1 wraparound
One on one wraparound services for Ally meant always requiring an adult next to her in order to function, follow directions, process information, and so on. Some people look at Ally and would not see that 1:1 support would be something Ally needs but she does. Having someone to support you 1:1 and closely is fortunate but also a very sad reality. It also means that there is always someone to analyze and criticize you. The amount of “no/nay” words Ally heard on any given day would be enough to mentally exhaust a person. Not many people are aware or trained on how to speak positively consistently.
Ally had severe expressive and receptive delays so she was at the mercy of an overwhelming amount of information that was difficult to process, let alone process rapidly. Ally’s severe speech and language delays are her biggest drawback impacting her ability to function independently. Her 1:1 support began as a need for personal care so the title for the 1:1 was PCA, Personal Care Assistant. As she entered grade level school, her 1:1 support needs changed to mostly behavior needs. Ally would receive markings on her daily behavior chart for behavior goals. Perfection isn’t healthy or expected so I don’t read too much into every detail. It’s when an undesired pattern begins to show that would require my attention. Ally had much difficulty even with 1:1 support from eloping, climbing, and blurting to task refusals. When challenges were combined and consistent, Ally would not be able to learn or demonstrate her knowledge at school. Having 1:1 support isn’t the end solution for a student with delays but it can help when there’s training for the 1:1 aide and proper implementation of the IEP, Individualized Education Program.
Ally was initially denied 1:1 wraparound service when requested. She was provided one after I contacted the DOE, Department of Education. Like many services for kids with special needs, though Ally has needs for it, this required more than one request. Many services, though data showed the need for it, would require parents to fight in order to receive them, a term known as advocating. This constant and ongoing process of seeking and obtaining services would exhaust most parents, including myself. That’s why having backup plans B and C can help relieve the agony when initially requesting for services. Definitely not easy or possible at times. You can learn how to self-train to readily have right resources available by downloading the four IEPProcessInterruptIt! slides.
Personalized social stories
Ally’s personalized social story helped her process information at her doctor’s visits. Ally was terrified to even stand on the scale. And, laying down to get weighed was even more terrifying though there was no physical pain. Less than two weeks after Ally read her doctor’s social story, she was able to let herself get measured, weighed, and so on. Social stories have been a game changer for processing information and addressing anxiety.
How Social Story Reduces Anxiety
toileting
Ally’s first personalized social story was to help her familiarize herself with school routines and toileting expectations. Though Ally was technically potty trained at age three, toileting accidents continue to happen for many years after during times of extreme stress at school. This would be an obvious signal of regression but would still require my parental input to evidence it. Ally didn’t have many non preferred tasks, or undesired routines, because the habits built into our everyday living turned non preferred tasks into accepted routines. My life and routines were organized around Ally’s schedules, as much as possible. Having my undivided 1:1 attention in a comfortable and peaceful home environment certainly contradicted that in a school environment. Yet, Ally loves both environments. She loves learning and school more than most people I know. With this love, she should be able to thrive in the school environment when provided with proper consistent support which also has been evident.
roadblocks
Getting Ally services had never been easy but I managed. Knowing which services I could receive to support Ally’s needs wasn’t easy either. There’s no list. There are lots of services available but what would be relevant, or attainable, to Ally doesn’t come with a list. I’m thankful that Christine Yu, a behaviorist and mother of a child with Down syndrome, suggested a BHT, behavioral health technician, for Ally when having a PCA wasn't effective. After I successfully received 1:1 aide, BHT and BC services, I thought that would be more than enough for the school to have successes with Ally but it wasn’t. Shocker! I still needed to perform tons of research to present at IEP meetings, which took place almost monthly though IEP meetings are only required once a year. That demonstrated the extent to which Ally struggled and the challenges I had to overcome for her. I’ve mentioned about 1:1 aide. The BHT would support the 1:1 aide. The BC, behavioral consultant, would support parents and work with the school team. It’s incredible how difficult it is for schools to effectively support a child with Down syndrome even with three additional staff on Ally’s team, two of whom are physically next to Ally throughout the school day on a daily basis. I can’t imagine how more difficult it would be for children with delays without any 1:1 support.
This was in addition to her related services in speech, occupational, social, and physical therapies. The roadblocks seem to be clearing, finally, at the time I’m writing my story. We’ll see. The most time consuming role I have as a parent of a child with special needs is that of a researcher. It’s a painful role full of overwhelming information to constantly dissect through, organize, document, evident, present, apply, and so on. If I was rich, I would hire a special needs researcher if there is such a professional. This role encompasses researching in all areas, not just one specialty, of raising a child with special needs.
limitations
My brain tends to instantly reject the notion when I hear that Ally might never or always something. Afterall, she is unique and I am unique and we are a unique pair. For example, as I’m learning about executive skills, one lifelong limitation Ally may have is that she’ll always need imagery to accompany text in order to process information. We’ve just begun embarking on developing Ally’s executive skills so my research is very little. Other executive skills seem to be achievable, even masterable but not poor working memory because of the need mentioned.
A friend cautioned that when I develop Ally’s ability to pair imagery with text on her own, be careful to not make her depend on it forever. This reminder to not make a need become a self fulfilling prophecy may be the reason how we can build in our own limitations. Anything Ally learns from me entails a fade out intention but often not a fade out plan. Knowing this, I will develop a fade out plan as I develop an imagery to text to improve working memory strategy.
Ally’s delays already have placed limitations on her opportunities. Lacking much physical dexterity and social skills made it tough to pleasantly participate in many sports. Ally always has exposure to play, sports, outings, and peers but not in many organized teams or athletic classes because she requires 1:1 support. Even at camp, I would have to volunteer to be her 1:1 support though I would operate on standby.
Having too many commitments wouldn’t be a good thing. Where Ally lacked in organized opportunities, I made up for it elsewhere laser focused on specific developmental next steps in her needs. For example, in the first year of COVID-19 when Ally’s therapies were minimal and all virtual, she was able to make good progress in all areas of delays. Her physical therapy even decreased to consult, much thanks to Ally’s grandmother, my mom. I didn’t have the physical stamina but my mom is a gym rat at seventy years young. Time with my mom enabled Ally to continually develop her physical abilities. My mom taught Ally how to ride a four wheeled bike. It may not have been the proper technical or ideal path in the long run but we were delighted Ally was able to pedal let alone ride a bike. They’ve been swimming together since Ally was a toddler. Other than swimming, we haven’t yet discovered Ally’s physical abilities in other sports.
Ride Bike Within 6 Months
my story
As I’m writing this story, I hope to continue it as Ally and I grow together. Follow along to see how the way we’ve been can continue to bring us successes especially in our relationship. My LearningPerspective business covers learning strategies but there are also other shared strategies in our everyday life you would find helpful to adopt, adapt, and apply in your own journey. Share them.
Here would likely be the sequels to my story. Of course, no one can predict the future.
- Surviving Single Motherhood With Child Born With Down Syndrome, First Eight Years
to be followed by
- Surviving (or Thriving) Single Mom of Child With Special Needs, Elementary Years
to be followed by
- Thriving Single Mom of Child With Special Needs, Middle School Years
to be followed by
- Thriving Single Mom of Child With Special Needs, High School Years
to be followed by
- Successful Single Mom of Child With Special Needs Into Adulthood
Chapter3 Links:
Beautiful Beginnings
Christa Ventura and Kelsey Mango have been delivering baskets full of newborn items to parents with children born with Down Syndrome in Delaware County, PA. Beautiful Beginnings is a non-profit organization that has shaved off many fears for parents like me and added much joy to kids like Ally.
{pause - I'm trying to hold back tears as I'm writing this because I'm remembering about their visit}
Ally was born weighing less than 3lbs. She weighed about 5 lbs in this photo. I still have that BB basket.
Kelsey, Holly, baby Olivia, & Christa
Families can't thank these ladies enough for the lifelong memorable impact they've impressed upon us since the beginning of our children's lives. Just beautiful.
Chapter4 Links:
good decisions
It’s never too young for a child to be given choices to start the process of making decisions. It can be as simple as a baby tapping one of the two items in front of them. Making decisions was a habit developed early on for Ally. Choices had to often be kept to two due to her processing delays. When she becomes an adult, I’ll impart on her what has helped me to make decisions as an adult. Towards others, I practice disinterested benevolence which is a philosophy to help others based on what is in their best interest not what I want. Towards myself, I practice the Serenity Prayer. The choice and opportunity of being single for many years during my Master's program into my early thirties provided time for me to truly understand myself and figure out many of life’s riddles and reach many of life’s goals such as true happiness.
I was ready to be a parent when I decided to have a child but I was not ready to be a parent of a child with special needs. I didn’t even know there was such a world of parenting. As much similarity as people want to see and as much unity as people hope this society to have, the fact is there are separate and different laws for parents of children with special needs. Ally will have to see clearly the reality in order to effectively navigate both within the special needs community and society as a whole. She’ll need to be able to make good decisions, balancing more than I had to in order to make good decisions.
desperate moments
Most of my desperate emotions and thoughts needed to be put aside when I was physically near Ally because I knew deep down inside that Ally would sense my desperation. As much I wanted to and needed to cry, it would be when she was asleep. Though I stayed calm to co-regulate with Ally, that, in turn, helped me. This would be a recurring theme for us. What I would do for Ally would help me in return. The ability to stay calm during a storm has been humbling and powerful. When my patience ran out and stress was at maximum in face of further uphill battles, calmness lifted my patience to the next level. The more cornered I was, the more calmness was required. This became a really powerful cycle each time I thought I may have exhausted all my patience. At moments, the floor would be where best to lay my head and breathe.
Another survival skill for me was letting go. Don’t sweat the small stuff, any of it. Don’t sweat the big stuff either, especially if it’s an isolated incident. Unless it involves safety, don’t worry. Instead, make a plan with strategies and steps to alleviate fears. Research and get resources, including people, to support the plan. When things don’t work out, let it go. Victories and defeats are temporary. When battles are lost, learn from shortcomings. Start over. Let little things slide but note it. Look for patterns. Let people go too. Some people in this society will remain ignorant even believing they have the best of intentions and thinking they know what’s best for you. We can spread awareness but anyone who isn’t ready to receive the message won’t hear us. Yes, letting go is easier said than done. For my daughter’s sake, it’s been done.
In turn, it’s made life more manageable because every thing (including each emotion and thought) and every person can not be kept. Disrespect should not be carried. Focus steadily on the big picture and the long term goals. There’s just not enough room for negativity when so much energy is required to charge forward.
joy I anticipated
I didn’t want a child until my mid-thirties. At that point, I had reached contentment in my life. The only thing I felt missing was a child. I realized later that most companies in this society aren’t structured to welcome working parents. And schools don’t have the schedules to accommodate working parents. In order to raise my child with special needs, the time requirement for appointments alone was tremendous and too much for companies to retain me as a full time employee.
When I got laid off, Ally was a toddler. It was a blessing in disguise. I was barely able to spend two quality hours on working days with my daughter when I was employed full time. After I got laid off, financial struggles set in rough and rapidly. However, it didn’t take long for me to be able to accept and get used to being poor because I was overjoyed with the time I got to spend with my daughter and much time was required to seek and receive her services. Our mother daughter times together have been embraced by both of us fully and beautifully. We have a two way relationship full of emotional exchanges, mental excitement, fruitful, and fun. I’m an organized and efficient person so time management, which is self management, wasn’t an executive skill I lacked; however, priorities had to be continually balanced because doing it all at once wasn’t ideal or effective. In other words, time management was still extremely tough despite my capabilities.
At age eight, Ally still has the sweet voice and gentle tone of a toddler and typically uses polite language. We forgive and thank each other throughout the day. Other than capturing moments, laughter was a must have on a daily basis with no exception. It’s not only wonderful for me to hear the sound of Ally’s voice but also enough for me to recenter myself whenever she spoke. To me, Ally has the best sound of laughter only second to that of my best girlfriend.
Those who babysat her would comment how she’s easy to care for. She doesn’t often throw tantrums, doesn’t get bored, eats anything, follows instructions, exhibits positive energy, displays kindness, and so on. To me, she’s the easiest child to take care of and raise. Being her mom is an easy role in our partnership. The other roles, especially researcher and advocate, have been terrifying and troublesome. And no, I wouldn’t wish that she wasn’t born with Down Syndrome just because of all the tears and fears in fighting for her rights.
Our journey celebrates Ally being born with Down Syndrome because the kind and level of joy we have is because Ally is born with Down Syndrome. In the special needs community, few things are taken for granted and the smallest moments are worth celebrating. This was my personality and way of life before Ally so it’s not new to me but the magnitude of living in extreme acceptance and gratitude has been remarkably unimaginable. Emotional experiences would often be euphoric. For example, she did all the problems incorrectly but she did it and without frustration. She spilled but she was able to pour and she was able to drink!
continue to
Chapter 5
Chapter7 Links:
therapy sessions
Since months old, Ally has received three types of therapies 1) speech and language 2) occupational, and 3) physical. Since age three, Ally also received social and behavioral therapies. Some of these therapy sessions were more than once a week. At age seven, Ally no longer needed one on one physical therapy. This was an unexpected surprise considering how much therapy she required and struggled walking as a toddler. As pleased as I was, I continued working on developing Ally’s core strengths. Just because Ally doesn’t need physical therapy at school doesn’t mean she’s not medically or otherwise delayed in gross motor skills. At age eight, Ally wasn’t running properly or able to keep up with neurotypical toddlers when racing. It’s incredible the amount of time spent in therapies for kids with developmental delays just to be able to do something, if not do it well yet. As much as therapies are needed, time with no therapies would be a welcomed vacation for both of us.
speech
Speech therapies were always the toughest of all therapies because expressive and receptive speech and language are Ally’s most severe delays. At age eight, Ally was barely processing information fluidly as a neurotypical three year old. However, she could read and write. One interesting challenge in managing Ally’s delays is that she’s not equivalent in all aspects to any one age. Each of her delays are equivalent to different stages, all age range, ranging from infant to beyond her age, as evaluated and by my perception.
When Ally was two years old, she only began to speak single words and she did not say “mama” until age three. Moms of children with speech delays can understand just what it feels like to not know when your child can call you mom. I was frustrated not understanding why Ally wasn’t really saying more than some words at age two. We didn’t learn sign language and Ally hasn’t yet been able to point. She would indicate that she wanted something by making grunt-like sounds. Her speech therapist then gave me two breakthrough strategies. I combined 1) sabotage the environment and 2) language board. After two weeks of consistently using these strategies, Ally not only said, “Mickey” but “want Mickey” then “I want Mickey Mouse.” It was amazing! My daughter was communicating!
I often wondered how therapists knew strategies but weren't always able to implement them effectively or have success with Ally. As mentioned, once a week isn’t enough and it takes many elements including appropriate environment and support in order to have success. Therapy isn’t easy for Ally or the therapists. In addition to biweekly speech therapies at school, I would take Ally to CHOP for continual speech evaluations and therapies. At age five, she was able to answer yes and no questions. At age eight, we’re working on conversations and comprehension. Within minutes, Ally could lose social interactions with peers due to her poor communications and social skills. Adults would give her more time and try their best to guess or rephrase her often incoherent spoken language.
I could understand her quite well because I’m versed in Ally chat but still struggled much with conversations. So much so I wasn’t able to grasp how her school day went other than to get some bits and pieces here and there. Ally has made much progress but, of course, has a long way to go. This is the typical life of a child with delays. So much hard work, effort, dedication, determination, and progress that has already been tough and exhausting since infancy yet there’s much more to do. Think about that for a moment. Have empathy. Have empathy for Ally. Have empathy for all people with delays.
drink
She couldn’t drink any liquids, not water, not milk, not juice, no liquids whatsoever. For a year and a half, I had to puree fresh apples adding just a pinch of water in order for her to not aspirate but consume a little bit of liquid. I did so with a blender on vacation and when she was hospitalized. The pureed apples decreased and the volume of water increased gradually. I was fortunate to have received this recipe from a daycare teacher. No professional in the medical field had any other suggestions than to purchase pureed food, which was high in sugar, and liquid thickeners, which equate to drinking powder.
Fortunately, the swallow study eventually showed that Ally would be able to drink. Though aspiration was no longer a fear, I would continue to have it on my radar that she may one day aspirate again. My daughter not being able to drink was the most fearful challenge I endured. All else was difficult but not fearful or as life threatening, lifelong fearful.
This YouTube video is similar to the lecture that I attended. Though my research on executive skills was limited, I had enough usable information to begin developing them with Ally. We began with 'Response Inhibition'. Thank you Dr. Dawson!
continue to
Chapter 8
Chapter9 Links:
cardboard activities
Reusing and recycling paper and cardboard materials quickly became a skill I had to gain because I couldn’t afford many games or learning tools. However, I got good at it as my creativity kicked into high gear. Lots of cardboard activities are fun to construct together. Ally’s participation in the construction process was always encouraged by me, even if it was just her looking at what I was doing until she had gained enough fine motor skills. Our best mother daughter project was constructing a four story dollhouse made out of cardboard. The little detail that went into it as we took our time was precious. Infinite learning can come from such a project by presenting everyday learning concepts. Here are videos on other learning activities.
Ice Cream Truck and Dollhouse Cardboard Videos
are being developed. Thanks for your patience.
Chapter11 Links:
treadmill training
All of my created activities had to take Ally’s delays in fine motor skills into account. Ally thoroughly enjoyed using her hands. When she expressed an interest in something, I was able to capitalize on it to help her develop her fine motor skills. For example, when Ally was obsessed with walking as a hobby regardless of the weather, I created a personalized walking story in a photo album with raised letters for her to learn to read. It was the first book Ally learned to sound out words. She could also view a separate video on YouTube made especially for her to practice reading along.
continue to
Chapter 12
Chapter13 Links:
yes and no questions
From Ally’s perspective, if “I” is me and “you” is mommy, then when or why is “you” me and not mommy? The same with “I” vice versa. Ally wasn't able to explain that she was thinking this but this is one reason why a child with delays may not understand “you and me”. For a question such as “Do you like pizza?” Ally may answer yes meaning that mommy likes pizza. And, I didn’t know that for a long time since “you and me” words are used all the time. I never thought about it until I pointed out that seemingly simple question to a therapist. It took over a year for Ally to nail down “you and me.”
There are certainly many other words used all the time that Ally may not comprehend. This would be one reason it has been difficult for her to process information. Until Ally can advocate for herself and identity to ask about the words she doesn’t understand, processing lots of information without understanding many words or part of the information would continue to be a struggle and at times too overwhelming and frustrating that she would shut down or exhibit undesirable behaviors. Imagine that you’re in a foreign country hearing only foreign language that you’ve barely begun to learn and is expected to follow directions, demonstrate comprehension, and complete tasks correctly and rapidly. This would be a reflection of Ally’s experience on a daily basis at school.
Self advocacy would require more than saying “I need help” because people don’t know in what regards to extend effective help. Self advocacy during homework will be demonstrated in my LearningPerspective platform.
scissor cutting
continue to
Chapter 14
Chapter16 Links:
planets
Kindergarten
clock
virtually
Covid-19
Quarantine was a good break from all the rush that society imposed on us. There would always be a decision to best balance between how much therapy work Ally could handle and times she can just be herself without any correcting, training, redirecting, and so on. Quarantine meant a vacation from therapy other than what I was able to assist virtually and create at home. Because Ally is used to and always enjoyed constructing with me and the activities created, she learned and developed happily and without much pressure. We rotated around four houses for Ally to maintain social sanity and have play opportunities with kids. I’m an introvert and a parent of a child with special needs so living in a quarantine bubble with boundaries and limitations didn’t feel foreign or difficult. It was just a narrower reflection of normal life until we're able to expand it. We also got to see what bare minimum was adequate for our sanity. It was an interesting time but Ally required more opportunities in order to develop her potential.
Ally developed in all areas of delays at her own pace. When quarantine was lifted, Ally didn’t have the fine motor skills to handle her face masks. It wasn't difficult for Ally to wear her face masks after we practiced with Halloween masks. She would, however, remove it at school when she was trying to communicate frustration she couldn’t express in spoken language. English is Ally’s second language. Ally’s first language is behavior. This has been a difficult message and concept for schools to see and accept as expectations of Ally’s behaviors included compliant behavior, and proper language, when it’s obvious that she couldn’t verbally communicate her needs. Effective communication with Ally was a struggle even with adult support. At home, too. She has significant delays in speech and language which is expressed behaviorally when not verbally. People who can understand this could understand Ally.
rotated
face masks
continue to
Chapter 17
Chapter17 Links:
Lisa Lightner's teachings have been a source of invaluable and organized information that I incorporate in my presentations at IEP meetings towards helping school staff better understand a child with special needs and demonstrate my willingness to collaborate as I continue the IEP process. All the information read can be reread and organized repeatedly but until I’m experiencing a particular stage of the IEP process, it’s like trying to predict the stock market. With each situation, positive or negative, I could only take one step at a time because the IEP team involves many people and the IEP process is not for the faint of heart. I’m grateful to pioneers who can offer insight and tools like Lisa Lightner. Her Don't IEP Alone Academy is part of my survival kit. Thank you Lisa!
IEP Goals - free list
All information and self-training in one place instead of having to attend tons of different meetings on various topics and then having to organize everything.
Author,
Mimi Somsanith
Chapter18 Links:
diplomatic perspectives
Data collection and presentation is part of what most advocates are paid to do. And, it can get costly. As a struggling mom, financially, I couldn’t afford paid advocates. I set aside three months for self-advocacy training. I organized a couple years of information, attended tons of meetings, spoke to professionals and parents, and so on. As mentioned, the most time I spent for Ally is on researching. It was like studying for a GMAT. Except after three months, I can’t puke out what I learned but to maintain what seems to be an infinite load of information. Even with all the information researched in those three months, it wasn’t enough for Ally to be learning at her potential. No amount of information is enough unless it’s usable. It’s up to me to organize and present it in ways that the school team could be able to visualize success, for all. This is indeed too much for any IEP mom to do. I did feel overwhelmed. But, I was able to maintain my perspectives and not lose myself during my self-advocacy training.
If I had money, I’d likely pay for an advocate. Then again, advocates are not welcomed by the school community. IEP moms, like me, are typically viewed as emotional moms who can’t handle any serious truths or work through any conflicts but just make school staff overwhelmed with complaints. If there could be at least one IEP parent on the school team, that typical viewpoint could change and make a difference with more successes for students with IEPs. Lack of understanding is one reason for the huge gap between school team and parents resulting in communications and collaboration struggles. The reverse is also true. When I’m able to understand school team member’s roles and responsibilities, I would be able to better have empathy for them. When both sides have empathy for each other, priorities can align more willingly.
My route often veers off the official IEP process by choice. It can be at times the tougher road to take but no one would or could have the time and investment to research down to the fine detail data required for my daughter to access her potential. I’m filled with gratitude to the PEAL Center and PaTTAN as well as Ally’s school team on executing the SaS Considerations Toolkit, now known as FAB, in their support to have Ally succeed in General Education instead of putting her in Life Skills. Not only did Ally began reaching behavior goals but she also began participating in classwork. Ally’s learning is what I want to focus on. It’s what I’m invested in. It’s what an education should provide. Ally learning how to comprehend instructions, comprehend social cues, comprehend self advocacy and so on are successes in pursuit. Unfortunately, the IEP is a program with processes that challenges all involved to first resolve behavioral, safety and other issues before a child can access an education. Much time lost and opportunity cost would only set the child further back when she starts learning. When Ally began learning, she had lost a year’s worth of reaching her capabilities. At the time of writing this story, I’m optimistic for Ally to access her education as a whole throughout her elementary grades.
access to resources
I’m in PA so some of the information I find helpful may not pertain to your state. The first source of the IEP Process to understand is the Procedural Safeguards. It is a good starting point but difficult to understand. I wasn't able to grasp it and am still not clear on many things until I cross that path. I've attended meetings covering various topics of the Procedural Safeguards. Thanks for Lisa Lightner's Don't IEP Alone Academy and these video series that I'm able to ascertain my roles and rights as a parent and the different procedures involved.
This is a free video series and a must watch for all IEP parents to better navigate the IEP process, especially if you're new to special education. Don't wait until you're out of options and are scrambling for solutions, like me.
Free video series created by PEAL Center to help educate
parents on the Procedural Safeguards
After taking these 3 steps, you will
feel better and be prepared
to advocate for your child.
Unlock your potential in navigating the IEP process!
These 3 steps will save you A LOT of wasted time, effort, headaches, and money
in the long run.
I hope you enjoyed reading my story! Now, you are ready to begin your journey ------ Out of Homework Hell & self-advocate in the IEP Process!
Author,
Mimi Somsanith
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Success in Special Education
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