Raising A Child With Special Needs

If you are a parent of a child with special needs, there may be days where you feel all alone in a battle. Perhaps taking care of your child’s needs has become overpowering, in addition to the rest of your family, that you have not taken the break to pursue reassurance from those who trudge along the same roads as you. No matter if you’re raising a child with emotional challenges, or various physical inabilities, we hope you’ll find comfort in today’s post.  Deanna “Squeaky” Miller ; wife, singer, and mom, is living the joys and trials of raising a brilliant child that happens to have special needs.

 

Tell us a little about yourself and your family. When did you first learn that your child/children had a disability and what was your reaction?

Greetings I am Deanna Miller, affectionately known as Squeaky (all about the speaking voice lol). I am an independent artist, singer, songwriter, and performer. I was born and raised in Tallahassee by a wonderful-loving family, who nurtured me into a woman of faith, serving my community with love through music, which is where the singing part comes in. I am married to a beautiful man, Henry for 13 years, and we have three gifted children, Kharizma 20, Julius 11, and Joe’l 10.

Julius is our oldest son and lives with the challenges of Autism. He was diagnosed by the Leon county schools at the age of 5. It was difficult! A year went by before I was able to wrap my mind around the word “autistic”. We didn’t understand how he got this, or how to cure him of it. I remember crying for days, blaming my body, as if I knew exactly how he became this way! We had no clue or real blame! A long road was ahead, we were terrified of not knowing how to help Julius.

In raising a child with special needs, how often do you make time for you? How do you do this? Do you have a support team?

Often….Pouring myself into my music provides a place of peace. I sing a lot around the city, and sharing my voice is me-time. My husband and other two kids are very supportive and will give me a break when I say I need it. They have great relationships with Julius, so it makes it easier for me to get away for a few hours.

Being an at-home mom is hard work and can be very tedious…. I pace myself! If it’s not a priority? I do not worry about it. Julius is in public school, so I get some down time then, and he receives in-home therapy several days per week. I have a great support circle of family and friends, too!

Do you practice therapy at home? What are some activities that you/your family do?

Yes, as I stated in my prior response, Julius receives in-home therapy several days per week. I do remain consistent with some of the exercises daily to help him communicate better, and transition from one activity to the next without difficulties. Music, books, drawings, movies, and games are our main ways of engaging with Julius. He is a cartoonist, with gifted drawing skills and loves to act out animated characters, so you can imagine the level of voice over talent in this family lol.

Therapy is the key point to managing autistic behavior, communication, and socializing. Find what they like and use it to connect with them. The challenges are still there but you learn how to handle them successfully.

What do you do about unexpected behaviors or tantrums? Do you worry that your other children may feel you are unfair to them? 

Unfortunately, the disability to communicate every emotion is the most frustrating challenge for an autistic person. Even those whom are verbal may have this challenge. Most will use tantrums to express sadness, anger, and even a disagreement with something or someone. Depending on the situation, Julius will scream and/or speak rude phrases, sometimes attempt to self-inflict harm to his body, with hitting, to express his anger, sadness, or disapproval. BUT because I am well aware of his body language and triggers, I can intervene. Starting with a calm voice, I acknowledge his feeling. This lets him know he’s not being ignored! Then I use deep breathing, while hugging him tight, to calm him. Sensory massages are very effective to help the body relax. While hugging, we discuss the problem. I will ask him to repeat what I say, giving him verbal understanding that what he wants can or cannot happen with explanation. It’s very important to use words that specify time (ex: before, after, first, then) Now, there are times when this does not work, and I have to let him get those feelings out, supervising his physical behavior to make sure he’s not hurting himself, or anyone else.

Our other two children are not on the spectrum, so creating a balance of affection and attention, equally is priority in our home. The way we tackle that task is to do a lot of family time. Group hugs, kisses, discussions, and prayer are some of the things we do. They are very involved with Julius therapy sessions, too! Joe’l plays well with Julius and Kharizma having a background as a CNA helps care for him when we are not around. It’s important to give personal time to them, too! No matter what it is, playing a game of their choice or singing a song with them? We make sure they receive equal amount of attention and love.

One of the biggest hopes for families is that their child will be able to function within society. What are steps that you take to prepare your child for adulthood and independence? (Some parents practice Community Based Instruction)

I’m going to be extra candid with this question lol! A few weeks ago, my daughter and youngest son asked this question, “Who will be responsible for Julius when you and Daddy are no longer able to care for him?” Now, at face-value I told them that they don’t have to worry about that because I’m living to see 90 lol, but I must admit that I have a silent fear of that possibility. I mean, you must trust family and close-friends to stand in your place and continue the life services you’ve provided for your special needs love one, with the unselfishness that comes with it!

Julius is independent to a certain degree. He has hygiene, dressing himself, and self-feeding mastered! But as for the more complicated things, that we know he’s not able to do, the lessons CBI can’t teach him because he’s not comprehending, is what I worry about most! I’ve been researching group homes and other alternatives to have in place for him if and when that time comes.

But at the age of 11 (soon to be 12 next week) Julius has surpassed the goals that have been set for him, so I continue to be hopeful that independence for him is not limited. He’s a very intelligent young man.

What are some heartbreaking choices you’ve had to make as a parent and making sure your child receives the proper support and care?

I will have to say school choice, and not medicating our son. You want to make sure your child isn’t just placed in a daycare setting, where no one is educating him. It was priority for Julius to learn in an environment that can teach him, and unfortunately the school that diagnosed him weren’t equipped to teach him long term. We had to decide to transfer him to a different school. Because we are involved parents, our demands for Julius to get the best care and education was heard. He is presently in a CBI (Community Based Instruction) program, in middle school where the concerns are higher, because he’s among teenagers. I don’t believe any parent can trust the school system 100% to treat their special needs child the way they do. But I thank God for the educators who look out for our son and treats him well. He is liked by his peers and amazes them with his gift of drawing. We have experienced some mishaps, but they were without casualties to Julius. He is a straight A student.

I knew I couldn’t learn my son’s needs if he was on behavioral medication. It was necessary to witness Julius in his organic manner and determine what services will be sufficient. He has never been medicated for his autistic behavior, and to this day we continue to use therapy, and holistic methods of medicine like essential oils and certain foods.

How do you celebrate the small victories?

A “high-five” followed by a song of choice is the norm around here hahaha! Julius loves the simple things, so sometimes we will treat him to the Dollar Store, or he will receive extra television time. We celebrate a lot!!! Every milestone is a big deal!

What are two important things that parents need to hear when they have children with special needs?

  1. I will quote what has been said to me….” God gave Julius the right parents.”
  2. “Julius is an intelligent boy!”

Those two things gave me hope in knowing Julius will be just fine

deanna Photo credit: Deanna “Squeaky” Miller

I hope that you found tips and tools in the areas of schooling, balancing the needs of your disabled child and the needs of your other children, coping when your circumstances have become too hard, and encouragement in developing friendships

Autism Facts:

-Autism is known as a “spectrum” disorder because there is wide variation in the type and severity of symptoms people experience.

-Autism spectrum disorder (ASD) is a developmental disorder that affects communication and behavior. Although autism can be diagnosed at any age, it is said to be a “developmental disorder” because symptoms generally appear in the first two years of life.

-A person with Autism has:

  • Difficulty with communication and interaction with other people
  • Restricted interests and repetitive behaviors
  • Symptoms that hurt the person’s ability to function properly in school, work, and other areas of life
-While scientists don’t know the exact causes of ASD, research suggests that genes can act together with influences from the environment to affect development in ways that lead to ASD. Although scientists are still trying to understand why some people develop ASD and others don’t, some risk factors include:
  • Having a sibling with ASD
  • Having older parents
  • Having certain genetic conditions—people with conditions such as Down syndrome, fragile X syndrome, and Rett syndrome are more likely than others to have ASD
  • Very low birth weight
-ASD is reported to occur in all racial, ethnic, and socioeconomic groups.

-ASD is about 4 to 5 times more common among boys than among girls

– Autism is one of the fastest-growing developmental disorders in the U.S.

Resource:

https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd/index.shtml

The Good, The Bad, and The Anxiety.

So you get the first teaching job of your career… but no one tells you about the stress/anxiety, the possibility of driving home in tears, the paperwork, sleepless nights, and literally thinking about quitting every day. Two things that I learned from an exhausting year were:

1. Teach where you feel wanted and appreciated.

2. Be calm.

My first year as a teacher was amazing but my second was the most altering and pivotal moment yet of my career. I experienced no peer support, no effective PD training, no administrative support, I took on the students no one wanted (they pile all the “unwanted ones” on new teachers), given a small classroom, and on top of that a parent hated me and would talk about me to students. I was promised a new classroom at the new school site being built but at a screeching halt my contract was not renewed for the next school year. I was heartbroken and defeated. I didn’t realize it then but losing that position was the beginning of a new position within a more diversified school district and a step closer to my passion of Reading Literacy

I am not the only teacher who has been through the “fire”. Remembering your purpose and your vision will always place you right were you are meant to be! Here’s a candid experience of what Mrs. Nylor, a nine year Teaching Vet, had to say about her first year? Read below.


Sunday, June 24, 2018

Terrible, Horrible, No Good, Very Bad Year

You finally got that call! “I would love to offer you a position at ABC Elementary!” You are ecstatic and super ready to get started. You’re nervous, anxious, and a whole bunch of other feelings you can’t put into words. Despite your fears, you dive in to your first year of teaching. But what happens when it’s not what you expected? What happens when your first year is a terrible, horrible, no good, very. bad. year?

I remember it like it was yesterday. My little cousin and I were leaving for the airport. We were headed to Connecticut to visit our uncle. Right before we picked up our things to head out of the door, the phone rang. It was the phone call I had been praying all summer that I would receive. The principal I had interviewed with just one day before called to hire me. I all but sobbed on the phone. Lol. You see, it was approximately 2 weeks before school was to begin and I had spent all summer trying to find a job. I was so thankful, grateful, and HAPPY! Unfortunately, that feeling didn’t last long.

Fast forward to the week teachers started. I was completely overwhelmed. Now don’t get me wrong. I was still excited, however:

1 I student taught in a second grade class and I was hired for 4th (I had a LOT to learn)

2 This school had a particular way in which they wanted you to decorate your room (in regards to brain based practices. I was a first year teacher aka I was broke. Lol. I was completely stressed about how I was going get all the things I was supposed to have.)

3 I had missed all of the vital trainings and district orientations that were offered throughout the summer since I was hired 2 weeks before school.

4 This was my first real job. Helloooo! Wouldn’t you be stressed too? I was officially about to begin…. ahem. ADULTING. 😱 Lol.

Even with all that on my plate, I made it to the start of school. Only two days in, I had my first disappointing experience.  A parent moved her child out of my classroom. Why? “He didn’t know division.” Apparently this mom didn’t think I knew what I was doing despite the fact that I gave out the same homework that ALL the other 4th grade teachers gave. Did I cry? Yep. Why? I was upset that she didn’t give me a chance and again, it was the same homework everyone else gave! From then it continued to spiral. One thing after another. It seemed that no matter what I did, I could not please my principal. In meeting after meeting. Session after session. Nothing I did was right in her eyes. This lesson was too long. This lesson was too short. This lesson I used the wrong term. This lesson I didn’t seem prepared for.

I reached out to teammates for ideas and suggestions. I was spent countless hours grading papers, studying the state standards, and to top it all off, there was one particular parent who was convinced her child loved school until he came to my classroom (this child smiled DAILY in my classroom…). I was stressed out. Crying daily. Defeated. And confused. Then came one of the most hurtful things ever. I was told to “consider other career choices.” I couldn’t understand why something I had dreamed of for so long, something I knew I was meant to do, was turning out to be such a nightmare. Why was this so hard? Because it had to be…. for me.

Now looking back, if  I’m completely honest, I didn’t get it at first. I had no idea all the extra work that went into teaching. And I believe it took me so long to “get it” because with all the suggestions I was given from colleagues, I was trying to teach like everyone else but ME. While I believe I was treated unfairly, I absolutely accept responsibility for what I COULD control. While my first year was awful, I learned so much from that experience.

Needless to say I did not return to that school after my first year. I moved to an entirely different district where everything I did was right for a change! (But that’s a story for another time). While year one was horrible for me, and I did heavily consider not teaching anymore, I refused to let go of my dream. I knew in my heart that I wanted to teach. It absolutely crushed me, but I chose to believe what God had to say about me.

My first year made me a better teacher and a stronger person in general. I learned to have confidence in myself, and be advocate for myself. I also learned that I can’t be anyone but me. Trying to teach like others is NOT the way to go. Lol.

I am now entering my 9th year in education and I can actually say I am grateful for my first year of teaching experience. Not only would I not be the teacher I am today, but I wouldn’t be able to share my testimony with others. Also, since then, I have had the opportunity sit down with that principal and share with her my success. 😊

So, if you are a teacher that just finished your first year and it was similar to mine, KEEP GOING. If you are about to begin your career, BE YOU AND DON’T BE AFRAID TO ASK FOR HELP. If you are a teacher facing adversity at your current school, PUSH THROUGH. Finally, if you are a teacher that had the same experience as myself your first year but you chose to push through and continue teaching, share your testimony. You never know who it could help. ❤️ Until next time ✌🏾

Nylor

P. S. – The year wasn’t all bad. My husband (then boyfriend of course) proposed that year

faithfamilyfifth.blogspot.com/2018/06/terrible-horrible-no-good-very-bad-year.html

Mrs. Nylor Mc and her lovely family! (above)

Follow Mrs. Nylor Mc and I on Instagram for more educational blogging, PD Discussions, collaboration, and SUPPORT!

@faithfamilyandfifth (Mrs. Nylor Mc)

@ymandbblog (Mrs. Ashley V.)

Host A Guest Blog: Do You Illicitly Admire Your Partner?

As I read “What Do You Secretly Admire About Your Partner?” by Psychologytoday.com, I decided to be deliberate about figuring out what I liked about my companion, I grasped that his weaknesses and strengths were all one and I would have to learn to identify and communicate exactly what I felt and work on a balance.

Recently our focus has been on a “us marriage” instead of a “you and me marriage”, identifying how our family histories inform our present behaviors, and how to navigate conflict well.  As I thought and prayed, I received a message….my spouse’s strengths and weaknesses are uniquely designed for me.

My spouse worked well under pressure, if something didn’t work he was looking to solve the problem, he’s compassionate, and can make others feel comfortable.

When I thought about his weaknesses, I completely shut down.  I knew that there was no way that I could negotiate or train away them. Dealing with flaws and strengths was a personal journey that he and I would have to make individually and then come together on one accord.  As humans, we are sure to stumble and fall, there is no such thing as a perfect person…would I be willing to take the good with the bad…could I learn to?  Marriage is inherently difficult, and we could not resent it but receive the difficulties.  Was there something in my spouse that was willing to go through the difficulties with me?

 

When the honey moon phase is over in a relationship, we in fact come to terms with who we really are and often, we find out who our spouse is.  Our strengths and weaknesses are often one and the same.  The very things that our partner fell in love with are some of the very same things that in turn could bother them.  For example, your partner may be prone to pessimism (no one likes a negative person) and always expects things to fall apart but he always has a Plan B to fix things (a positive).

In our relationships, the very things that drive us insane about our romantic partner are often associated with underlying strengths that the person has.  –psychologytoday.com

 

 

In examining myself and the different stress responses, my reaction to stressful situations or conflict is fight mode.  In fight mode, my initial reaction is fear and not love.  When overwhelmed with excessive stress, life becomes a series of short-term emergencies. I lose the ability to relax and enjoy the moment.  A “burnout” is inevitable.  My spouse on the other hand is freeze mode and flight mode.  In these moments, we find each other to be so frustrating but the positive to this is that – fighters are confrontational, but in other circumstances I am often assertive and a strong decision maker.  My spouse might tend to retreat, but in other circumstances he is very accommodating, flexible, patient, and a very strategic problem solver. 

After being in unhealthy relationships, for the first time I realized I didn’t have to fight any more.  In watching him, I saw that being confrontational was something that I didn’t have to be.  His patience with others was something that I had always admired.

My family challenges my want for control and often pushes me to shift my perspective to focus on what’s most important.  The small things can often build into mounds if not pruned but understanding that people and situations are not perfect; I see how God can use weaknesses to create something positive in others…in me.

-that was FREEING.

MINIMALISM: Be More With Less

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SIMPLE IS SMARTER.

Beginning In October, my daughter had her 8th birthday.  She loves seafood, macaroons, and her Goddie (God-mother), so we decided that her Goddie would come to town (two hours away) and we would take her out for seafood and macaroons.  My daughter frowned and looked somber the whole entire time.  I was so embarrassed at how ungrateful she became because they did not have raw oysters (yeah I know what you are thinking). Now, Christmas has past…and not ONE of the toys that was bought, was thought of a week after Christmas but a few!  She’s begging for more toys and doesn’t take care of the ones she has and doesn’t clean her room.  Granted she’s on the A/B honor roll, her concept of being entitled has got to stop.  So I have to begin with myself and then her.

WHY MINIMALISM IS BETTER.

As a child, I didn’t have tons of toys but I did not want for things to play with.  I learned the magic of venturing out doors and a love for my imagination with my cousins, my daughter, on the other hand, is entertained at the thought of watching children play with toys on YouTube; annoying right?!    She has the type of closet that you often open at your own risk.  I thought “she is  just messy” but in actuality my closet looks the exact same way today and I need to teach her how to clean her room properly and throw away things that she does not need any more and donate toys/clothes to others.  “Convenience parenting” has apps and tablets for keeping children quiet or reminding them to clean up their rooms.  I want to raise children who can retain information when told, who can complete tasks without being prompted, and who are grateful for what they do have.

As a teacher, I understand the logic and practices of what makes children thrive and as I continue to grow within my pedagogy, I realize that most children need minimalism.  Minimalism is not always cleaning up or giving away your things as charitable donations.  Minimalism is about focusing your family on what is important in life.

In pursuit to minimalize our life, I am focusing on these key concepts:

  • Choosing Gratitude:  cutting down on holiday gifts (tangible gifts).  Birthdays should be about celebrating life.  Valentines day should be about love.  Give the gift of experience.
  • Choosing Family:  making family dinner a priority 1-2 times a week for improved psychological well-being.  spending time with the children unplugged from social media.  learn a new craft/hobby.  READ.
  • Choosing Health:  choosing healthier meals.  cutting back on empty snacks.  COOK TOGETHER.
  • Choosing Outdoors: trading screen time for outdoor play. learning to respect the environment.
  • Being a Conscious Consumer: thinking before I buy.  Allowing three days to pass by before I make big purchases to make sure that the item is something I really want.  Only buying toys the children earn and do chores for.  TEACH CHILDREN YOU DONT NEED TO BUY THINGS TO BE HAPPY.img_9923

Books by Black Authors That You Don’t Want to Miss This Year

If you are an African-American fiction-novel fanatic like myself, then you’re hankering for your next book-fix. In these winter months, I’d rather curl up with a hot cup of mixed berry hibiscus tea and read. I’m currently reading the great Tayari Jones An American Marriage, and it is everything I am looking for in a novel right now. In Jones’ cross-examination of race and incarceration in America, the lives of newlyweds Celestial and Roy are at a turn just 18-months after their nuptial.

Photo credit: Amazon.com

 

Thirty & Thriving

“You can’t have my joy”

….I never saw my “30” coming!  Most know or have an ideal of what they want to have accomplished by 30.  The truth is, I’ve never lived for or envisioned my 30’s.  I’m a “live for the moment” type of gal.  I knew exactly what I wanted by age 25….but I never put a time frame on my expectations. 

 I learned in college to trust timing; I was a single mom, struggling to graduate from college but I did.  Once I met my husband…I realized that life happens with such intricate detail…things I had no control over were happening all the time; molding my “now” and the unforeseen, but altogether working in my favor. “No’s”, losing jobs, relocating, losing my car, having  to sleep on a bunk bed or couch, unrequited love, and depression were all apart of the bigger picture.

Life may not be picture perfect but it doesn’t have to be in order to reap the rewards that come from overcoming adversity, facing change with an open heart, and letting go of empty expectations.

Meaning and purpose are not born in the highs and lows; it’s sparked in all the moments in between when we pause, reflect, and extractthe lessons learned. True meaning is made when we put those lessons into action and honor their purpose in defining us as beautiful everyday warrior women!

“30” became a magical number for me, shedding a woman that I never wanted to be and seeing a woman I never knew I would become. 

This year on my 30th birthday I’ve chosen a celebration of abundance, gratitude, and of self-worth. 
Here is to knowing “Faith without works or practice is dead”