Book on Disabilities in Twins (eBook)

Relief From Abnormalities to Behavioral Issues

Jamaca E. Willard (Autor)

eBook Download: EPUB

2024 | 1. Auflage
186 Seiten
10-10-10 Publishing (Verlag)
978-1-77277-612-6 (ISBN)

Infos

Expanding your family is exciting and nerve-wracking, especially when you are expecting multiples. For families whose multiples have special needs, that anxiety can be drowned out by the news of life-altering medical diagnoses. Jamaca Willard experienced all the emotional ups and downs with her twins, and shares her family's journey in The Book on Disabilities in Twins: Relief from Abnormalities to Behavioral Issues. In every chapter, Jamaca gives insight and practical tips for managing your new reality and building memories. She also talks about the grieving process, as you let go of your expectations for your children and embrace them where they are. Her wisdom and practical examples showcase how to advocate for your children, both medically and educationally. The Book on Disabilities in Twins also taps into the realities of having children who have aged out of the system but who still need care. Jamaca is realistic in outlining the challenges that you face as a parent, while building a sense of community as she shares what her family has struggled with and overcome. With a clear-eyed approach, Jamaca gets to the heart of what it means to be a parent of multiples with special needs. The Book on Disabilities in Twins: Relief from Abnormalities to Behavioral Issues is an encouraging guide that highlights your unique position as a parent, to love and advocate for your children at every stage of their lives.

Having children with special needs can be challenging at the best of times, but what if you throw in multiples, and a pandemic? Jamaca Willard faced all these challenges and more as she advocated for her twin sons, both with special needs. The Book on Disabilities in Twins: Relief from Abnormalities to Behavioral Issues is her letter to you, as the parent of multiples with various medical and cognitive diagnoses. She shares her family's challenges and the practical steps they took to address them, sharing the wisdom learned and ways you can adjust to your new reality. Jamaca also discusses the role of holistic approaches in managing her sons' health, providing alternatives to traditional medicine that have been effective for her family. The Book on Disabilities in Twins chronicles Jamaca's journey, letting you know that you are not alone in navigating this time in your child's life, whether they are just starting school or moving into adulthood. Jamaca also shares how she focused on advocating for her sons on the therapeutic and educational levels, thus providing tips you can put into practice as you work to find the best solutions for your family. With a focus on the beauty of life with twins, Jamaca highlights how the challenges can help you to grow personally and build meaningful relationships within your family. The Book on Disabilities in Twins: Relief from Abnormalities to Behavioral Issues will provide you with support, encouragement, and practical steps that you can take in order to thrive in this unique environment.

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1

Nurturing children with unique needs can be a challenging experience for parents. But when you have twins, both dealing with various diagnoses, it can be even more difficult. Perhaps you have twins, who due to being born early, are facing a variety of health issues. Intermixed with the challenges are the moments of pure joy, when they smile, laugh, and give you hugs. Their accomplishments become a source of pride. But this road of children with special needs is a complicated one.

As parents, finding out you are having a child is often a joyful experience. You spend hours imagining what your child will be like, what characteristics they will have, and what they might accomplish. In your mind, you plan out their whole life, even though they haven’t been born yet.

Then that amazing birthday comes, and you see them for the first time. There in your arms is perfection. What the doctors and nurses have to say seems secondary to this moment when you hold your precious child—until they break through, talking about medical issues. Then your child is whisked off to the NICU.

Now your life shifts to a world where you are in and out of the NICU, trying to connect with your baby while they fight for their life. Eventually, if you are one of the lucky ones, you get told the wonderful news that your baby is ready to go home. But this one chunk of time can often be the beginning of years of doctors, hospitals, and an endless round of tests and medications.

While not every child is born early or with medical concerns, for those of us who have a child born with these challenges, the road is full of twists and turns. The normal development that you imagined, simply doesn’t materialize. Instead, your world is altered. You grieve the life you thought they would have and, instead, begin the process of embracing who they are and the unique life they will lead.

Now, imagine finding out that you are having twins. The challenges you faced with one child who had unique needs are doubled. Despite that, there is also a tremendous amount of joy. For much of my journey, the perspective I chose to embrace, and my attitude, played a huge role in shaping our reality today.

The truth is that I could have spent my time lamenting the boys’ diagnoses and rattling on about how unfair it all was. But that wasn’t going to improve the situation and it certainly wasn’t going to improve the boys’ quality of life. So how did I get here?

The Shift of Our World

The day I found out that I was having twins, I recall leaving for work at 5:15 a.m., since I had to be in the office at 7:00 a.m. It normally takes me a little over an hour, depending on the bridge traffic to cross the Dumbarton Bridge. I never made it across. I was at a dead stop when I noticed a vehicle coming towards me from behind. I remember thinking, “I don’t think he is going to stop…”

Next thing I know, there are police, paramedics, and an ambulance all present. I was rushed to the hospital. Thankfully, I didn’t sustain any damage beyond the obvious jolt of being rearended. Once I was at the hospital, I was examined, and that was when the nurse practitioner mentioned that I was having twins. I cried a river as joy mixed with so many other emotions, which is so typical when you are pregnant. The rest of the pregnancy seemed to go fine, until I went into labor at 27 weeks.

For me, the world of twins with special needs started when my boys were first born. The two of them were adorable, although they were very small. I didn’t even get to hold them right away, since they both needed to go directly to the NICU.

Since the twins were so early, the doctors let me know that their development would likely be about three months behind because they were preemies. Naturally, I didn’t worry initially when they were not talking or crawling. After all, it was to be expected. I thought, “Well, I can live with that.” But as they got older, it became clear that this was more than just delays from being preemies. If only it had been that simple. Instead, I went from being in a relationship to being divorced by the time our boys were three years old. The struggle of raising my twins was compounded by the fact that I still had their sister to raise, who was 9 years older. She ended up being a great help to me over the years and is still a critical part of our household to this day.

Perhaps your children initially had similar experiences and the delays in their development were chalked up to early births, a reality for multiples. As parents, we build up a store of dreams about what we expect our kids to do and be. We envision their first steps, first days of school, birthdays, driver’s licenses, and then graduations, careers, and families of their own. The vision is incredible, because we can see all the potential our children have to offer and everything that is possible.

A diagnosis is often like having a bucket of cold water thrown on you. Naturally, you are shell-shocked, as doctors start filling your head with all the things your children won’t be able to do. Whether they realize it or not, these doctors and medical professionals trigger a type of grieving that you will do for the rest of your life. You will see other children reaching milestones and find yourself sad because you know that your child is unlikely to ever experience that.

My sons are autistic and nonverbal, among a host of other diagnoses. There were many times when we were trying our best to stay afloat as the years progressed, and so did the disability. I really believed there had to be a way to correct this wrong. I was really lost and trying to figure out how this could happen to me. I mean, I had always taken care of myself by exercising and eating as healthily as I knew how, including moving to a vegetarian lifestyle.

I remember calling my mother and asking if anyone in the family had this disease. Of course not, she responded, almost as if to say, “What is autism?” My life was to do the best a single mother could do to raise her three children and pray that it would come to an end. Like any other parent, I want my twins to have a good life and my daughter to have a life outside of caring for her baby brothers. It is every mother’s dream to have her children healthy and able-bodied as they mature and age out of the nest. The dream I had was that not only they could travel again and sightsee, but I could also, while still having a front row seat to their accomplishments.

That dream was smashed up, shattered into large and small broken pieces of glass. There was also plenty of anger. In those early years of their lives, I felt as if I had been lied to. Every time I pointed something out, I was told to wait and that they would catch up. Now I was wrestling with them not being able to communicate verbally. It is a lot of assuming, guessing, chancing, and just plain rolling with the punches.

As a mother, I spent a lot of time trying to read the cues on their faces to figure out whether they were hurt, in pain, sick, hungry, happy, bored, anxious, and so much more. While other parents can ask questions and get answers that help them determine the best course of action, I was often playing a guessing game, trying to eliminate wrong answers as quickly as possible so that they didn’t start melting down. They would often get so frustrated because I couldn’t understand them. Trust me, I was just as frustrated as they were.

After all, as a mother, caring for your children means being able to see to their needs. It can feel like you are failing when you can’t figure out what they need at the most basic level. Eventually, because they were my children and I was with them every day, I had some ideas of what they wanted and liked to do. It wasn’t always easy, but we kept plodding forward, praying it would improve.

Learning about their diagnoses meant that I was constantly adjusting to dealing with different challenges. It wasn’t always easy. My boys were small for their age, so it was easy to pass them off as younger, just to avoid judgments from others about their meltdowns, which were often triggered by misunderstandings or their sensory sensitivities.

The truth is that the term nonverbal actually implies they cannot communicate at all, which is not accurate. My boys use facial expressions to tell us a variety of things, although it did take years for us to be able to read their faces and understand what they were trying to say.

The medical community has traditionally thought that children who are not speaking by the age of five will never speak, but anecdotal evidence suggests that language development can still occur, sometimes up to 13 years of age. Intense therapy efforts have proved to assist in this process, but it does not necessarily have the same impact for every child.

To be clear, just because a child is nonspeaking doesn’t mean they are less intelligent than those that are more traditionally linguistic. The absence of verbal communication does not mean communication is not occurring; it just means that communication is taking place through less traditional means.

My boys have continued to communicate in these less traditional ways, but as I learned over the years, paying attention gave me a way to get to know their personalities, even if it took a little more work to achieve.

The Reality of Compounding Diagnoses

When it comes to my precious children, I am a proud mom. Yet, when the twins were finally diagnosed with...

Produkt-Details

• Erscheint lt. Verlag: 20.6.2024
• Vorwort: Raymond Aaron
• Sprache: englisch
• Themenwelt: Sachbuch/Ratgeber ► Gesundheit / Leben / Psychologie ► Familie / Erziehung
• ISBN-10: 1-77277-612-2 / 1772776122
• ISBN-13: 978-1-77277-612-6 / 9781772776126