Parenthood is a rich journey. When you add special needs into the mix, the parenting experience is amplified, adding poignancy and humor. Here are a few observations from my tenure in special needs parenting.
1. Showers are a double-edged sword. You never know when the kids will bust into the bathroom to show you the new color they painted the dog. Or sometimes they actually leave you alone and you take your time savoring the peace, knowing that you’re gambling between finding all well or discovering that they have managed to get past the lock, deadbolt, chain and alarm on the outside door, and you’ll find them marching down the street in their PJs with several neighbors following them in their cars in an impromptu parade.
2. Somehow the child whose occupational therapist reports low finger strength and coordination can manage to unlock every device known to humankind and elope out the front door.
3. A hearing-impaired child can somehow hear you open your secret chocolate stash from three rooms away.
4. You are well acquainted with the strange blend of pride and chagrin that occurs when your child with cognitive impairment outsmarts you.
5. Social media isn’t just an outlet, it’s a lifeline. Some of your closest confidants and dearest friends live in your computer. When you see them in real life you can pick right up on conversations even if it’s been three years since the last time, but there are plenty you have never met. They are scattered across the country and world, but you share a sacred connection, and they are like family.
6. A good night’s sleep is your Holy Grail. You have heard that such a thing exists, and the notion is intoxicating. You pursue it as your life’s mission only to find it always elusive. Though many still claim it exists, you’re beginning to believe it’s merely a myth.
7. You wish there was a way to Teflon-coat feelings. Whether it’s the sting of a stranger’s look or comment, the frustration of unsolicited advice, or the observation of a professional that hits too close to home, a magical elixir that would wash away the bite of the world would be heavenly.
8. You have more wisdom, depth and strength than you ever imagined possible. Your parenting experience has stretched and challenged you, and you have risen to the occasion on behalf of the child who stole your heart.
9. Your typical child(ren) have richness of compassion and empathy and value all people for who the are.
Dr. Ifeanyi Ufondu is Founder and Owner of Beautiful Minds Inc.- Advocacy & Special Needs Solutions. He is America’s leading Special Needs Advocate and is currently based in Dallas, TX.
By Dr. Ifeanyi Ufondu August, 22. 2016
Due to their unpredictable nature, transitions in general, can be very difficult for our children with special needs. The new school year creates a whole host of transitions that made me want to devote this month’s column to tips for helping your child make a smooth entrance into school.
About 3-5 day prior to the beginning of the new school year, make a social story with your child that will create a visual map as to what he/she can expect in the upcoming days. The story does not have to be long and should include the basic morning routine (getting dressed, taking the bus, etc.), what the child can expect during the course of the school day (class activities, snack/lunch breaks, recess) and then the schedule for the afternoon/evening (bus ride back, additional therapies, dinner, etc). You may want to laminate the covers so that you can reuse and don’t forget to add a place for your child to check off the activity once the event has occurred.
Additionally, I encourage you to write your own specific narrations to the story, for example, letting the child know that the noise and activity levels during certain parts of the day are different and what he/she can do about it to reduce their own stress levels.
If possible, allow your child an opportunity to visit his/her new classroom, 1-2 days ahead of the opening of school. Typically, arrangements can be made either directly with the teacher or with the school administrator to allow your child the opportunity to spend a few minutes getting the ‘lay of the land’. You may even want to encourage your child to add a small gesture (special sticker) to the classroom set up so that come the first day of school, his/her efforts are acknowledged by the teacher for the creation of an especially warm welcome.
For middle and high school students; special arrangements can often be made in advance of the first day of school to help your child learn how to navigate the hallways as they go from class to class and how to get to and open their lockers in a timely fashion.
Children with special needs are often plagued with auditory processing disturbances. While not traditionally impacting actual hearing, this can nonetheless make the auditory instructions by the teacher often difficult to understand. I suggest supplementing the verbal messages with a visual schedule that can be placed on the board and/or on the child’s desk to help him/her know exactly what is going on in the classroom and what the upcoming expectations are. Teachers can also encourage their special needs student s to be their ‘helpers’. This gesture asks the child to explain to the class what is going on, or help support a fellow student in class. What this typically accomplishes is twofold; the teacher can check to see if the student fully understands the lesson while elevating the status of the child with challenges by making him/her ‘the special helper’.
Finally, I encourage the establishment of an alliance with your child’s teacher. That early bond will be crucial to your working together as a team throughout the school year. BEAUTIFUL MINDS INC.
At Beautiful Minds Inc. we understand that strengthening skills through play is a proven strategy to help kids learn. For kids with special needs, video games can offer opportunities to practice everything from communication skills to organization — even social interactions — in a comfortable environment where players set the pace. While games designed specifically for kids with special needs can address certain issues, many mainstream titles can support your kid’s learning. Dr. Ifeanyi Ufondu, founder and psychologist at Beautiful Minds Inc. -Advocacy & Special Needs Solutions states, “Mainstream games can boost a sense of independence and confidence in kids with special needs, provide the ability to ask for help, and let them challenge themselves.” Try these games to help kids with special needs in these five areas:
COMMUNICATION
Games that promote visual storytelling, social modeling, and language patterns can help kids with speaking, listening, and communicating. Learn more about communication challenges.
Cool School: Where Peace Rules, Mac, Windows
This free game helps kids practice conflict resolution.
Itzazoo, Windows
Using “living ink” technology, kids’ drawings are animated and incorporated into this unique learn-to-read game.
Storybook Workshop, Nintendo Wii
Players take turns reading fairy tales aloud, and the game changes your voice to fit the scene.
Apps for kids on the autism spectrum
MOTOR SKILLS
Games that encourage movement — from dancing to sports to drawing to handwriting — strengthen muscle memory and put a name to an action. Learn more about motor skill challenges.
Active Life: Magical Carnival, Nintendo Wii
Using both the standard Wii remote and a special floor mat that tracks players’ foot movements, this collection of fantasy-themed mini-games gets kids moving as it tests their short-term memory, their ability to follow instructions quickly, and their skill at matching colors, shapes, and patterns.
Disney Fantasia: Music Evolved, Microsoft Xbox 360, Xbox One
By moving like a conductor in time with specific sounds, this innovative rhythm game teaches kids about music and provides plenty of physical exercise. Kids will feel as though they’re actually manipulating and creating music while getting a modest physical workout.
LetterSchool, iPad, iPhone, iPod Touch
LetterSchool does a great job of teaching letter writing with a three-step process: Learn the starting points for each stroke, trace the letter, and write the letter without hints. Once you draw the letter, it animates, which is a sweet reward.
Organization
Developing new routines, transitioning activities, and managing time are challenges for kids who struggle with executive functioning. Games that emphasize visual scheduling and break big jobs into smaller tasks can help. Learn more about organizational challenges.
Disaster Hero, Mac, Windows
This free Web game visually demonstrates what to do in case of emergency. Upon completion, players gain a sense of empowerment, as they will know the recommended steps for planning for, anticipating, and responding to a natural disaster.
Engineering.com Games, Mac, Windows
With about 100 engineering, physics, aerospace, and logic games, kids can find a wealth of opportunities to practice skills such as decision-making, deduction, and prediction that help build understanding of sequential directions.
Super Mario Maker, Nintendo Wii U
Kids learn step-by-step processes as they use the Wii U GamePad’s stylus to design, create, and share their very own Super Mario adventures.
READING & WRITING
Games that give both verbal and written instructions, break down directions into small steps, and focus on the player’s strengths can help boost reading and writing skills. Learn more about reading and writing challenges.
Elegy for a Dead World, Mac, Windows
It sounds creepy, but Elegy for a Dead World is a free-form storytelling game that gives kids the freedom to write whatever they want using prompts or their own imaginations.
Mia Reading: The Bugaboo Bugs, Mac, Windows
With 12 learning activities and four levels of difficulty, Mia Reading takes kids on a super-engaging learning adventure that covers a wide range of literacy basics, including associating words with images, phonics, spelling, sentence structure, and more.
Scribblenauts Unlimited, Nintendo Wii U
Kids can learn about puzzle solving while exercising their vocabularies and stretching their imaginations in this highly creative puzzle adventure. When the game prompts them to help a character, kids write a word using the Wii U’s stylus, and voila — the item appears on-screen!
So let’s get out there and get gaming! Beautiful Minds Inc.
Dr. Ifeanyi Ufondu
Bullying. A word that has only gained in intensity and power despite its frequent use. Everyone is outraged by bullying. It’s the hot topic at parent meetings and “zero tolerance for bullying” has become every school’s catch phrase.
And rightly so. Consistent bullying is intolerable and can lead to horrific situations and leave lifelong wounds, especially on the heart of a small child, unequipped to make sense of a situation that would baffle most adults. We have all read the stories, horror stories really, of children and teenagers who take their own lives as a result of prolonged, systematic bullying.
We read these stories and try to convince ourselves that these things couldn’t touch us on such a devastating level.
We tell ourselves that a child who is bullied so badly that they take their own life must not receive the necessary love or attention at home to overcome the bullying by their peers. A child who would take their own life must not have really been taught how great their worth was, how precious and irreplaceable they were. However, if we are honest, we know that this is not always the case. It’s far more complex than that. A child who is terrorized daily on the playground may have vulnerabilities in other areas already and may not have the capacity to cope with or process the trauma they are enduring.
Sometimes the most loving home in the world can’t save a child who has been made to feel so utterly worthless.
It is frightening to acknowledge that sometimes the most secure home isn’t enough.
Bullying is intolerable.
Schools should have a zero tolerance policy. These words instill confidence, the idea that something is being done right, but is there substance behind them?
Sometimes a concern about bullying is met with something frighteningly similar to victim blaming. “I am sorry but your child isn’t like other children. I’m sorry but your child doesn’t read social situations very well. I am sorry but…”
In essence, I’m sorry but somehow your child has brought this upon himself.
The bottom line is that these “I’m sorry but” comments are essentially contradictory to the idea of having a zero tolerance for bullying policy in the first place. These comments in fact, contribute to bullying rather than lead to finding a solution. The message given is that children could avoid being bullied if they would just conform to a standard notion of normal. If they could manage to become just like everyone so as not to stand out in any way.
Is this what we want for our children? It isn’t what I want for mine. The answer to bullying is not conformity or eliminating differences or the very things that make someone an individual. As my children grow, I don’t want to teach them to blend in and not stand out. I want to teach them to stand up and be who they are and were created to be, even if who they are is a little bit quirky, a little bit different.
We can try to teach ourselves and our children courage, empathy and hard things like how to stand up for someone who is being hurt or made fun of. We can try to help them understand that a person is allowed to be different.
It’s important to keep teaching children that there are obvious differences we see at once. Founder of the nation’s leading Special Needs advocacy agency, Dr. Ifeanyi Ufondu, Ph.D. states, “We must remember to teach and educate our children that we don’t bully a child who has a different skin color or who speaks with an accent. We must remember to teach them not to make fun of someone who uses a wheelchair or has a visible disability. Must must diligently show them that those with differences are just that…DIFFERENT! It’s cool to be different!”
It’s also important to teach our children and perhaps ourselves, that there are less obvious differences as well. Disabilities or syndromes we don’t see or understand fully because a child seems “normal” on the surface. The little boy who is bright and engaging but obsesses over one thing and repeats himself constantly. The child who is sitting quietly in class and suddenly has a series of noticeable vocal or motor tics. A child with sensory issues who has trouble processing the light, feel, noise, and speed of the world around them and experiences meltdowns or shutdowns. All of these things may seem funny to classmates until someone sits down and explains to them what is actually happening to the child experiencing these things.
That that child may just think a little differently and understand and experience the world a little differently. Most importantly, that there is room in the world for everyone and it’s ok to be a little different. It’s not a bad lesson to take with us as we go through life.
Summer is upon us!
And for some special needs children, summer break is already here! Summer is usually a joyous time for children, but a transition to summer for special needs children can be quite challenging for them and their parents. Even if your child will be attending Extended School Year (ESY), there will be a decrease in school and therapeutic hours. And for many special needs children this will be a shock. If this is your first summer break as a special needs parent, it is important to know that for some children moving from a rigid routine to a more relax one can turn into chaos. Most children are initially excited to be out of school. But, when those initial feelings wear off, a lot of anxiety and difficulty with adjusting to the home or another environment can be hard.
To prevent this chaos or the act of consistent meltdowns, here are a few tips to get you through the summer.
1) Talk about school ending the last few weeks of school. You do not want school to end without you mentioning it to your child first. During your discussions, make sure you let your child know all the fun things that they will get to do in the summer.
2) Keep a calendar and highlight the summer months (you can also use this tip for all breaks throughout the year). For some children, this is helpful to see when the summer break will begin and when it will end.
3) Set and keep up with a consistent schedule. Depending on your family, summers can be lazy and relaxing days, or they can be hectic and sporadic. Since your child is use to a consistent routine, it is also important to keep up a routine and schedule as much as possible. Your schedule and routine should be as predictable as possible, just like it was during the school year.
4) Keep your child informed. Using visual schedules and/or telling your child what will happen each day, will keep your day organized and prevent any meltdowns resulting from a lack of a predictable schedule.
5) Continue using whatever supports, activities, and behavior strategies that you used during the school year. Unfortunately, during this time, you may see old behaviors and/or sensory issues that you have dealt with in the past arise again and you will have to resort to methods that you have used previously.
6) Keep your child busy! Whether you set up playdates with their classmates, send them to summer camp, or schedule activities at home, make sure your child is active. Whatever you decide to do, remember to keep a routine and schedule as much as possible.
7) Use social stories. Social stories are a great way to prepare children for future activities (such as a transition to summer break) and to reinforce behaviors. Create a social story to help with each new activity that your child may encounter. This is especially important if you will be traveling during the summer.
8) Find therapeutic activities. In addition to setting a consistent routine and schedule, finding therapeutic activities such as horseback riding can help stimulate your child’s senses over the summer.
9) Let your child pick activities that they want to do this summer and place them on a calendar. This way they will have things to look forward to throughout the summer.
10) If your child will be going to summer camp, visit the camp first and take pictures. This way your child can become acclimated with the environment and who their camp counselors will be.
THINGS TO KNOW
Remember a child that depends on and thrives off a set schedule and routine AND transitions into a summer break, most likely will have some difficulties.
Recognize that there may be a period of adjustment to the summer activities.
Watch out for regression in skills, ability and behavior.
You can decrease the number of meltdowns and time of adjustment period with a well-planned and repetitive routine and schedule.
When going to the park and/or other group activities, be on alert for any bullies trying to take advantage of your child.
If your child is going to ESY, go with them the first day. Starting a summer program in a new school with a new teacher can be quite scary and intimidating.
If you are looking for ideas for a summer program, do not forget to check out your local libraries, museums, parks and recreation departments, and religious groups for the availability of programming to fit your child’s needs.
AND HERE IS ONE OF THE BEST TIPS…
Dr. Ifeanyi Ufondu says, “Have fun.fun, fun! Summers are suppose to be enjoyable. So, get outside, try new things, always have a backup plan and be patient.”
What is your family doing this summer?
Nigel has been attending an inner-city school in the Los Angeles Unified School District (LAUSD) since kindergarten, and has always been a quiet student.
A few years ago, when his teacher recommended he be evaluated for an Individualized Education Program (IEP), the Mom checked in with Beautiful Minds Inc. – Advocacy & Special Needs Solutions first. She had been through the process before with her oldest child, Nigel and knew full well the long term consequences of having a child “labeled” as needing special services.
According to Beautiful Minds Inc. – Advocacy & Special Needs Solutions founder and advocate, Ifeanyi A. Ufondu “The decision to have a child evaluated within the DOE system cannot be taken lightly. It’s a lifelong designation that will follow that child for their entire academic journey.” Ufondu further asserts, “Every future teacher your child encounters will have certain perceptions and expectations about him/her before they enter the classroom. Every new school will have to be assessed for their ability to serve that child’s needs, or whether they can gain the funding to do so.”
THE IEP JOURNEY CAN BE A LONG ONE
A family has to stay on top of endless meetings, conference calls, and appointments with education specialists. Decisions about where the student can enroll for middle and high school, how they will be administered the standardized tests, whether they will require a special classroom, it goes on and on, year after year.
Even if a learning disability is clear to everyone, a family may find that there are no public schools available with the services they need. At this point, some parents hire an advocate and at times even must hire a lawyer to sue the district to reimburse them for private schooling, or special services that aren’t covered. This is all daunting, especially if a family has limited time or financial resources.
HONORING A PARENT’S DECISION
Because of her past experience, Nigel’s Mom was inclined to push back and tell the school no. She discussed this decision with Beautiful Minds Inc. – Advocacy & Special Needs Solutions, but in the end it was her decision to make, and she chose to forgo having the evaluation done. This is what we call an EMPOWERED parent, one that decides what’s best for her child, and stands by it.
This semester, and now in third grade, Nigel was placed on the honor roll at his school, and he is thrilled. His tutor, Michael Diaz of Beautiful Minds Inc. – Advocacy & Special Needs Solutions says, “This has built Nigel’s confidence so much that he is tackling the grade level book they are reading in class,” Because of Winn-Dixie by Kate DiCamillo.
At Beautiful Minds Inc. – Advocacy & Special Needs Solutions, we are not suggesting for a minute that a child with a possible learning disability avoid getting the help that they need. But, we must stress how important it is for parents to seek outside opinions from educators and advocates they trust. Having an evaluation done within the DOE system is the first step down what can be a very long road, and parents need to be certain they are making the right choice for their child.
