The Homeschooling Journey of a Special Needs Family

Oct 19, 2018 | Regina Merchant

As the parent of a special needs kid, the last thing I ever expected to feel when we began our homeschooling journey was relief. But that’s what we got. As the single mother of a child with nine different diagnoses, I don’t use the word “relief” lightly. Homeschooling my daughter astounds me.

It certainly didn’t start that way. I grew up believing that homeschooling is for weirdos and the proper thing to do is for kids to go to school. As the child of two public school teachers, my education was constant. If our school days off didn’t match up, I spent the day at their schools anyway.

To say I felt like a failure when first considering homeschooling my own child is a massive understatement. I stewed in my ignorance over what homeschooling looks like for years. I never chose it. I was forced to it when the public school system failed us so intensely. Now, certainly there are public educators who do extraordinary work with special needs kids, and certainly there are schools where kids may thrive. This was not the case for us in any of the five schools my girl had attended by the time she made it to the end of second grade.

Our experience with schools was arduous.

Before beginning elementary school, she loved to learn. There was a wonder and joy apparent across her whole body as she picked up new skills. When elementary school began, the only sensation she experienced each morning, before breakfast or even before getting dressed, was dread. I mourned the loss of that love of learning. I never in a million years expected to see that love of learning resurface when we began homeschooling, but it did!

The journey to and out of brick and mortar classrooms has sometimes been cruel, often exhausting, and occasionally extraordinary. That’s life with special needs kids.

To be the mother of a special needs child takes the mother bear instinct to vigilant war leader level. Remember not sleeping when your baby was an infant because you had to make sure it still breathed? That feeling can last forever when you are the parent of a special needs kid.

My child has severe anxiety. She screams and runs when she is triggered by such small things as someone sharing the story of a dog that is big and loud. It’s impossible to be out in the world and not have her triggered several times a day.

To be a single mother and be unable to hold a job because your child’s elementary school calls with the news your kindergartner was missing on an open campus for 20 minutes is untenable. That school is renowned for its academic program. It’s so elite they have an 800-deep student waitlist. She literally won the lottery to begin attending as a kindergartner. I had been over the moon to see her begin to learn a new language, to access full arts and physical education components in a state notorious for dropping them.

None of that mattered. The next day I sat outside in the parking lot crying and shaking, unable to drive away for two hours. It wouldn’t be the last time. And that was before she had epilepsy. Her first seizure would come the following year and would be an hour long.

But kids go to school, right?

We struggled mightily, trying to make the system work.

When the district fails to provide a safe and accessible school environment, we special needs parents have to fight the establishment for our children to have equal access to education. We would do anything for our kids. And while every family probably worries about not fitting in, the vulnerability around acceptance for both parent and child is largely increased when that child has special needs.

Hope dies as a system meant to occur in partnership with parents becomes adversarial. It’s devastating. And over the next four years, the battles and the fears only grew. There is a weary and glazed look that often comes over the faces of many special needs parents when they hear the letters IEP.

“IEP” stands for Individualized Education Plan. An IEP can provide measures of protection and opportunity for students and staff by articulating specific goals and methods appropriate to meet the acknowledged needs of the child. Most of that never got accomplished for my kid. My daughter’s anxiety is so severe that when it flares, she feels panic akin to being trapped in a burning room. She deserves the cooling and calming of experienced care providers who know how to de-escalate and help her.

My child’s public school had not the time, the training, nor the impetus to do any of those things. Instead, when the principal called me in, I sat with my mouth agape as she said that my first grader was suspended for having a panic attack in the principal’s office because they wouldn’t let her call me. In her panic, she hit the principal. Had they let my daughter call me, none of that would’ve happened. There’s no way we were going to make it through 13 years of this.

But kids go to school…don’t they?

I took the fight to the next level.

I called special needs parent organizations to help me learn how to fight effectively to get my kid’s needs met. I ended up speaking to disability rights lawyers. I learned the language and documented everything. I fought for her to have the “least restrictive environment,” to have “free appropriate public education.”

My girl performed in the school talent show three days after she had fully recovered from her second seizure, when she’d been given the doctor’s go-ahead to return to school. But the school wouldn’t allow her back in the classroom for a month because the teacher was uncomfortable with epilepsy and was unwilling to be educated about it. I opened a case with the Office of Civil Rights. But no help came.

Behind my back, the PTO and staff referred to me as “Seizure Mom.” And though I would get my daughter up for school an hour and a half before it began, though we had a visual schedule, and though she had everything laid out to have a successful day, five minutes before we got in the car she would have a tantrum. That meant we were 20 minutes late. The principal would then condescendingly invite me into his office to “chat” for several minutes about how irresponsible it is to be late to school. Properly achieved IEPs can include no penalties for tardiness, but they don’t remove the stigma.

And hey, to own that title of “Seizure Mom” for a minute: One in 10 people will have a seizure at some point in their lives. One in 10. One in 26 people will have epilepsy. It is a huge number, more than cerebral palsy, multiple sclerosis, muscular dystrophy, and Parkinson’s disease combined. It’s as common as breast cancer in this country. I could go on. You’re going to want to know how to help out if someone has a seizure.

Maybe it was just that school.

We learned that the dysfunction was systemic.

It wasn’t just that school. At this point I questioned if it was possible to find a safe schooling environment at all. There were services that needed to be put in place for the benefit of everyone, including the other students in her classroom and the teachers. We needed the district to complete academic testing in order to receive services. But they wouldn’t even do the legally-mandated testing. At another school, filing an 88-page complaint to the state yielded nothing. Though the district was found to be grossly out of compliance, the only result was that the district should reprimand themselves and move on.

We moved halfway across the country to a state known for a higher quality of both education and medical care. But she still wasn’t safe in public school. She frequently locked herself in her locker and screamed. With 30 kids in her class and one teacher with no classroom aides, it was likely the class bully would mercilessly injure my child while she had a seizure. The IEP team said my kid didn’t need an aide, so I still couldn’t work because I kept having to go to my child’s school. Although I did discover that Domino’s delivers pizza to school parking lots, sitting in my car every day in February in -6° weather waiting for my kid to run out the door is no way to live. It’s all beyond tolerance.

I began to accept that no, all kids do not go to school.

No matter what society demands, we just couldn’t do this anymore.

Our society is so attached to the public school rhythms that we even deny mother nature’s own cycles. We say that school starts in the fall, even though technically autumn begins about a month later. We say summer starts right after school ends though solstice is weeks away.

Well, I say the experience we had with public school was definitely out of sync with what works for my daughter’s true nature.

Finding relief is a process.

Remember at the beginning of this odyssey I mentioned relief? That my daughter’s love of learning is back? There is no more panic and dread about school.

At public school she would crumple up a page of math problems, scream, throw it at the teacher, and run away crying.

It took seven months of emailing, calling, documenting, resourcing, bringing her to school, plus an impromptu visit to the district office of the head of special education with my daughter in tow, to get a school psychologist from another district to come do an evaluation.

This excellent psychologist, who was shared by five different schools, discovered there is a disconnect in my kid’s fine motor skills when her brain knows what it wants her hand to do. When the hand doesn’t comply, the disconnect triggers an anxiety attack.

It’s been a long journey.

Now that we have deschooled and are at home, her anxiety is significantly lessened because we took the time to discover what it was that she wants to learn about, to find out how she learns. If she gets stressed we can take a break, find a different route to solve the problem, do what makes her feel safe and soothed.

She is teaching me just as much if not more than I am teaching her. Now, she brings me a page of math questions unprompted. She asks sweetly if I can review it with her. She can achieve higher levels of math than school testing indicated. My girl sits at the computer and plays math games with unwavering attention and enjoyment. She has a sense of pride in her work. I have profoundly missed that in her.

I almost missed it completely because I thought homeschooling had to look like setting up a public school at home. And that is just nuts. Remember how I said I was raised by teachers? I had to deschool as well. Perhaps even more than she did. I had to give myself a chance to heal, to see that our children naturally lean into learning all the time when given an environment where they are comfortable and encouraged.

Homeschooling doesn’t have to look like anything other than what you determine is most productive for yourself and your kid.

Relief is everything.

To be on a team with my child that gives her the time and space to learn is such a relief. To raise a special needs child is a constant endeavor that requires enormous ingenuity, resources, endless effort. Relief is a treasure for special needs families. Relief is something we will never, ever take for granted.

There are so many perks that come with homeschooling… getting up later in the day, learning in pajamas on a Sunday or in the middle of July if we feel like it, to name just a few.

Sure, there are days when her diagnoses make it difficult for her to move forward, but that is what treatment teams and time to learn how to cope and move through things are for. When we go to doctor and therapy appointments, we never have to miss a day of school. Homeschooling gives us that time.

There is a grace and breath to homeschooling that is such a gift. I could write 10 separate articles about what it has taken to financially, emotionally, culturally get us to this point. But what matters is that my daughter is happy to be learning. I’m so proud of her. The relief that comes to us both, to experience that love of learning, means just about everything.

March 28, 2016July 17, 2019

Homeschooling a Special Needs Child

Mar 28, 2016 | Christina Keller

Homeschooling a Special Needs Child

I am a huge advocate for families homeschooling their children with special needs. I believe schools are high stress, low engagement, and very punishing environments for children who learn out of the box. Parents are vested in the overall well-being of their children and know their children the best. This makes parents who can manage it, the best educators for these children.

It is easy to become overwhelmed, though, when your job extends from parenting to include educating. In the years I have worked in education, I have applied the following methods in both home and classroom, with children who meet milestones at targeted times, and with kids who exceed or do not meet milestones. The methods themselves are the outline. The implementation is consistent. The resources may change and the goals may change, though. This is why these methods fall under the term “eclectic” academics, and they are as individualized as your child is. With information, support, and strategies families can help their children receive an “appropriate education” with higher quality and less stress then going through the school system.

This Starts with a Realistic Assessment

The first thing to do is to realistically assess where your child is academically. This can be hard. For example, your child may make syllabic sounds throughout the day, but will not imitate them for another person, or use them functionally. An older child may have answers that sound correct, but are actually memorized scripts that they apply to a similarly worded question without understanding the nuance or function of the words. If an action was observed once, that’s a great sign. It means your child has the physical ability, but it may not mean that the skill is readily applied with meaning. Your child may be able to memorize every person and statistic on a video game board, but not use money appropriately. The purpose of assessment is not to downplay your child’s skills. In fact, I often end up recognizing far more prerequisite skills than parents were aware the child has. The purpose is to identify the first step to target in a skill, to combine a well-known skill with one that is difficult so you can maintain motivation and engage your child where they are.

Parents Have a Better Feel for Their Child’s Social, Emotional Age

Recognize that children, no matter the nature of their disability, are more similar than different to their typically developing peers. Sometimes the behavior or responses are more typical to a younger child, but they are still moving along that ubiquitous bell curve, just at a slower pace. One example of this is with a young girl I have worked with for 7 years. She is considered to have a severe form of autism. My sweet friend is functionally nonverbal. Her school did not believe us when we said she could talk. Until last year they did not attempt to make her talk. She can talk at home. It is stilted, and often just a few words, but her other response is aggression. When we moved from talking and reading single words to reading and using sentences she became very angry! Her mom would say, “I don’t know what happened.” I smiled and said, “The only difference between your daughter and my daughter is my daughter has the words to rant when she doesn’t like a subject we are studying. She also threw tantrums to avoid difficult things, but at a younger age.”

We must look at their development when we apply skills. Where are they socially emotionally? How would we help support any child at that social emotional age? Would we set limits? Give more visual cues? Give them a way to express themselves? The answer is yes, but the actual tool changes depending on their age, and an actual assessment of this age is much more likely for someone who lives with the child. For my friend, I use an abacus. Every time she responded, she moved a bead over. When all of the beads were moved, she was done with her work. If it was particularly difficult, I let her move two beads. When all her beads are moved, she is done. We need to teach coping skills when kids are frustrated, and recognize if it was truly easy they would be learning it. Some valuable coping skills include having pictures that represent emotions. When we are really upset and frustrated one of the first skills we lose is our ability to communicate. This is a human response. We learn to cope, in good or bad ways, and most often in the way that is modeled to us. For children who have limited verbal skills this could be modeling a physical activity. The next time you are frustrated, or open to pretending you are frustrated, throw rolled up socks at a target. Have a place where you can safely stamp your feet. Sometimes deep breaths are not enough, especially for children who struggle with poor impulse control. But if we develop a habit of a safe physical outlet when words fail, that is what these children will use. Then you have to acknowledge how proud and happy you are that they were able to handle frustration in a productive (versus destructive) way. By the way, yelling is ok with me, but I recommend using the bathroom. Giving a child permission to be angry is not the same as permission to be destructive or disrespectful.

Lara is my sweet 9 year old friend who is functionally nonverbal but so very smart! She is an example of out of the box skills that make a difference. She was very proud of her drawings.

Responsiveness and Flexibility are Important for Special Needs Children

The beauty of an eclectic education is that your resources and tools can change and evolve with your child. Traditional schools are not capable of this type of responsiveness and flexibility. While discrete trial training is currently only recognized as a tool used with children who have autism, it is actually used in many settings with a very eclectic, infinite range of items. First, identify the steps needed to teach the skill. That may sound simple, but in reality it can be far more complex. We do not realize how many steps there are to skills we hardly think about. Consider getting a drink of water. You must know how to find the cup, how to find the water, ask for help if it is needed, open a lid, or turn on a faucet, hold a cup, recognize your mouth, be able to swallow, be able to place the cup down…. So the first step often is going to depend on your child. Some children learn better by hand over hand prompts, some learn better by watching a video of the process, some learn better by a flip card book of the process. If I were teaching it to one of my students, I would guide them through the entire process, and slowly decrease support as skills are gained. Here is the discrete trial training part. You would only use enough water for one sip or gulp, and then you would repeat the process 4-5 times. This is helping the child build a habit. It becomes easier with each practice just like any other habit. This method can be applied to anything, but remember support is provided throughout so it does not become frustrating until the support is not needed.

Keaghan, in kindergarten using an table with multiple discrete activities to increase attention.

Errorless Learning Is an Important Strategy

Errorless learning procedures can simplify your day, provide the appropriate support, and change as your child needs. An example I use for teaching reading and writing involves using picture cards, word cards, and tracing. This is basic. You do not want to be too creative, or it becomes distracting. When teaching the word “bear” for example, which does not follow phonetic rules, use a picture with the word bear on it. You will ask the child to read the word, “bear”, and then put a few more pictures with the words under them. You will have your child point to the word bear, and read it. Next you will have cards with the words on them, no more than three or four, and ask him or her to match the words. Then you will ask for the card that says bear, without the picture. You may end the session with the book “Brown Bear, Brown Bear …” and have the child read every time the word bear appears. The next word you work on, may be brown, or see. The book you are reading can help to determine the words you teach because of the rhythm and cadence. Just like learning a song, this makes it easier to remember the words in the book. Alternatively you might start with a special interest of the child’s, or with something you think will engage them. This does not happen overnight! It is more important that it is fun and engaging to support motivation and curiosity.

Lily using errorless learning and discrete trial training to practice multiplication facts and then on to handwriting.

Movement Helps Kids Stay Focused

If your child struggles with low attention and poor impulse control consider having them sit on an exercise ball. Maintaining balance and doing work keeps their brain and body busy, so does chewing gum. Now for the eclectic, academic piece: Divide a table into four spaces, or you can use each room of the house to represent a different station. The individual components will depend on your child. Start with his or her baseline skill and increase it as he or she develops new skills. The first station might be math. At this station one, two, or more problems, depending on your child’s ability, will completed. When those are done, your child moves to the next space/seat and reads a page and answers questions verbally about the page. If there is a written answer, he or she moves to the next station and provides a written response. Consider incorporating some errorless strategies into this, draw a line to a correct response, or trace the correct response. After that, move to the fourth space for a physical activity, one that increases attention building like a puzzle or taking one turn of a game. Good game choices are something like History timeline where you place a card or two in the right space. Then you will return to the beginning and start all over again, until you have gotten through the project or subjects or activity you are working on. Try to have more difficult activities followed by an easier or more preferred one.

Skye also following an activity base routine.

Reinforcements can Help Motivate

I often hear from people that they will not “bribe” their children to do something they should do. A bribe is giving someone something when they want them to do something that is wrong, illegal, or unethical. A reinforcement is a reward for a difficult job that is well done. It gives kids a reason to do the job instead of avoiding it. Just remember, if your child does not seem motivated by the reinforcement, it is not reinforcing the skill! The range of things that can be used as reinforcements are infinite, choose a different one.

Learning Is Infinite

Be realistic about goals for your child, but do not let anyone limit your child either. If the goal is that your child can sign their name, do not fill his or her day with handwriting practice. Instead give them opportunities to trace their signature several times a day every day. Make it meaningful for them. They want a new video game; write a receipt they have to sign their name to. Have them send postcards to family members, and trace their signature. Have them put labels on favorite belongings, and sign their name to it. Then identify the next skill that is important and meaningful to them. Working in this incremental way can help your child to make great strides, as little by little soon becomes a lot. The last main point I wish to express is this: learning itself and the strategies used to help people learn are infinite.

Christina Keller has a bachelors degree in Child-Life Psychology, Masters in Clinical Behavioral Psychology. She has worked supporting families and children in education and early intervention for a combined 20+ years, and homeschooled her own children for Past 5 years. Christina learned the most working with amazing families who have children that teach her new things every single day, and by being involved with the constantly evolving lives of her own children.

Check out our previous post on homeschooling high school here.