How to be an effective special needs parent

How to be an effective special needs parent

“Special needs:” Parents of special needs children hear the term constantly. To them, it often holds a different meaning than it does for parents of typical children. Although some may see it as derogatory, others view it as a way to describe the supports and services that some children need to thrive.

How to be an effective special needs parent

We’ve heard the term, “special.” The word currently defines an entire community of disabled people. They have “special needs,” they may require “special accommodations,” or are eligible for “special education.”

Unfortunately, these words have been used in a derogatory manner over the years. People use them to insult each other’s intelligence or belittle it. It is shameful and insulting. I wish it didn’t happen. This is despite the fact that terms like “special needs” cover a wide range of disabilities, not just mental, but physical as well.

It is because of this negative association that we parents of special needs children worry. We worry about how our child is perceived at school, to friends, to the world. We battle with the terminology ourselves, especially when people say things like, “Well your child doesn’t look/act like they have special needs.”

Schools have tried to be sensitive to the term, although it is bittersweet. For example, my son’s school yearbook does not use the term “special education” to define any student’s class even though the teacher is listed as an SDC (Special Day Class) teacher. Such efforts are made with the best intentions, but they still imply that special needs are not something to speak of.

Please don’t get me wrong, I understand the sensitivity. I don’t have any outright solutions to change the perception of the word “special” other than talking about it.

To me, “special” terminology is simply a classification listed on an IEP (Individual Education Plan) for services, education, and accommodations. It does not mean my child is better or worse than any other child. It just means that these services are in place so that my child can learn in the least restrictive environment on equal-as-possible footing with his typical peers.

Our special needs children are unique, they are wonderful, and they have the same legal rights as any other child in this country. However, their road is more difficult. People make assumptions and judgments. People don’t always assume competence. Our children are already being stigmatized whether their disability is hidden or whether they wear it on their sleeve.

All we can do as parents is own the term. Explain to our kids on a level that they can understand who they are, what rights they are owed, and the tools they may need to have a good quality of life. We teach them how to navigate that path, how to speak up for themselves in IEP meetings when they are old enough to attend. Some of us will have to advocate for our children their entire lives. That is the reality.

So right now, this is the terminology we have. This is what we are working with. We, as parents of special needs children do the best we can. That is all we can do.

Siblings of special children also have needs

Growing up with a sibling is a source of learning. It is the first intense bond we have with an equal that becomes a close relationship that will guide us throughout life and that determines our own personality and the way in which we relate to others. Being next to a brother is a continuous trainin

Growing up with a sibling is a source of learning. It is the first intense bond we have with an equal that becomes a close relationship that will guide us throughout life and that determines our own personality and the way in which we relate to others.

Being next to a brother is a continuous training. It serves to discuss, share, play, negotiate, give in, have patience, combat envy, etc. When one of the brothers is special does not necessarily have to be negative, but it is a fact that can cause concern and ambiguous feelings in children and parents.

What happens when one of the brothers has a disability

How to be an effective special needs parent

Children are very affected by everything that happens in their environment. If one of the brothers has special needs, this will influence the dynamics of the family. The siblings of a child with a disability experience feelings that are difficult for other people to understand and that as time goes on they will evolve as the brother’s needs develop.

Growing up with a child with special needs can awaken sensations and feelings such as:

– Feeling guilty. Often these children think they have something to do with their brother’s illness.

– Loneliness and rage. The difficulty of sharing feelings with other peers in the same situation or the need for more attention from parents are the trigger for the emotions that appear when feeling alone, or isolated. The family and the environment must clothe the child to normalize the situation and that this does not happen.

– Feeling of fear. Young children have a hard time understanding the reasons why their brother is different from others.

– Shame. This feeling appears as the children get older. Know that the family you belong to is not the same as the rest of friends or have to answer uncomfortable peer questions, etc. They are difficult situations for the child.

The experience that a child with a special sibling can experience depends on the degree of and type of disability he or she has. In addition, age also counts. The maturational and emotional skills are conditioning the experience of the brother’s disability. The environment and the degree of family cohesion, how they communicate or help each other can facilitate or hinder coexistence with a brother with needs.

How to help siblings of special children

Rabies, shame, guilt are feelings that this type of children can experience but if help is provided from the environment and the family these children gain autonomy and personal growth But how can the environment help? :

Communication. It is important that since children are young, parents learn and use resources to be able to report the characteristics of the brother’s disability and its evolution.

– Involve the child in the decisions. This generates security in the child that is fundamental to combat the feeling of fear that is generated in the child. In addition, integrating it in decisions makes the child take commitment to help care for and care for his brother in the future

– Learn about what happens. Knowing about the origin of the disease and what it consists of to improve their quality of life can become a life project.

– Mutual assistance between equals. It is an activity in which the children meet with siblings with needs in which they meet as a group to explain their concerns and fears. Conducted by a therapist and in which different objectives are treated

The 7 Habits of Highly Effective Special Needs Parents

Did you ever notice how some special needs parents seem to be not just surviving, but doing quite well? Even with the challenges they face every day, and heavy demands on their time and energy, they’re happy, organized, energetic, all-around “put-together” people – and they hardly ever seem to be in a rush or stressed out. What are their secrets?

It’s not that their children’s special needs are any less serious. And it’s not because these parents just naturally have a sunny disposition.

From my own experience as a special needs mom, from observing fellow special needs parents, and from seeing what works best for my coaching clients, I’ve discovered over the years what it takes to be one of these “highly effective special needs parents.”

Parents of children with special needs who live manageable, balanced, joyful lives utilize a set of skills I call the 7 Habits of Highly Effective Special Needs Parents. You can learn these skills, just as I did years ago, and just as my clients do today.

So … what do highly effective special needs parents do? While everyone has their own unique mix of what works best, here are the common threads that I’ve found running through the lives of these parents:

1. They make rest a priority.
Highly effective special needs parents are in bed by 10 pm or even earlier most nights, even if it means leaving something unfinished. Parents whose children have irregular sleep patterns take naps whenever possible to make up for the late nights and pre-dawn awakenings.

2. They make time for eating well.
Highly effective special needs parents don’t skip meals – and they eat delicious, nutritious food. They get the whole family involved in weekly or monthly meal planning. They also tend to stay hydrated by sipping water throughout the day.

3. They find support.
Highly effective special needs parents get help with even the smallest things, as often as they can, from anyone and anywhere they can: family, friends, neighbors, agencies, organizations, and their community. They hire help when necessary, and find creative solutions for bartering help with family and friends. They belong to support groups for their children’s special needs and disabilities, and they’re in close contact with other special needs families in their area.

4. They guard their time carefully.
Highly effective special needs parents know they have to be careful about how many activities they sign up for, and the activities they do choose to participate in are only those that are nearest and dearest to their hearts. They save most of their free time for whatever truly matters to them most.

5. They schedule social time on the calendar.
Highly effective special needs parents regularly go out with friends, and also with their spouse or partner. They take the time and effort to train sitters, relatives, or friends on how to care for their children, so their social time can be as fun and worry-free as possible. They take advantage of respite services in their area when they need a break. They schedule social time weeks or months in advance, and then do whatever’s necessary to make it happen.

6. They nurture their own needs and interests.
Highly effective special needs parents reserve time for exercise – walking, biking, hiking, stretching, exercise videos, even gym workouts. Many exercise with friends. They engage in creative pursuits and hobbies that can be fit into small moments here and there throughout the week. And they make time for intellectual activities too, like reading or taking a class for personal growth and enrichment.

7. They intentionally practice stress-reducing techniques.
While all of the above habits are excellent for reducing stress, highly effective special needs parents take stress reduction a step further by practicing deep breathing, meditation, or anything that helps them build up their inner reserves and cultivate inner calm. Highly effective special needs parents also reserve time each day to put aside the therapy goals and the discipline issues, and relax with their children, enjoying them just the way they are.

What about you?
I’ve seen it time and again: the more you practice these 7 Habits, the more productive and efficient you become, the more you’re able to handle whatever comes your way, and the more things fall into place in your life. Many of these habits are about taking excellent care of yourself, so you can continue to take excellent care of your children and family.

It’s well known that when parents lead low-stress, balanced lives, children do better socially, emotionally, and academically. Try some of these 7 Habits, starting today – you’ll be amazed at what a huge difference they’ll make – for you, your children, and your family.

Financial Planning for a special needs child family means planning for two generations. The crux of the planning is providing financially for the child for the time when you are not there. But even within your life time, meeting the child’s needs is a complex exercise due to several factors and there is no choice of which factor to consider first and where delays are possible. So parents need to take a financial planning approach while planning the child’s future.

The financial planning process can be understood by breaking it down into a few steps. Here we shall look at the various aspects which should be covered in a special need financial plan:

Identify The Special Needs Planning Stages

There will be life stages of the child where parents will feel financial pressure. When therapies and medications start, when the child reaches 15 which is a transition to an adult, when child turns major i.e. age 18, when a parent retires, and on death of either a parent. What situations can emerge at these critical stages in the life of a special needs child and how to deal with them, must be considered at the planning stage itself. . For example when a child is transitioning to an adult stage, there will be a change in living needs, behaviour and financial requirements, which parents must accommodate in their finances. Thus, parents should draw the life stages of the child and identify clearly where they need to plan.

Below is a map which illustrates the situation that may arise at different life stages of the child:

How to be an effective special needs parent

Legal and Estate Planning

In many situations parents need to deal with legal issues such as obtaining the legal guardianship of the child once he or she attains the age of 18, or addressing issues related to making the child a beneficiary in financial assets. Appointing Guardians, Caregiver and Trustees who will be responsible for the child’s affairs when parents are no more, needs special attention. A Will and a Trust must be factored into the planning, to ensure that the child’s future is secure. Also, all the personals who will be attached with child care need to be made aware on the child’s requirements for which a Letter of Intent, although not a legal document, may be considered. Lastly, options for the child’s residential needs when parents are not there should be factored into estate planning.

Insurance Protection

The planning of insurance for a special needs family is different from traditional planning. Here, great value needs to be attached to the parent taking care of the child at home unlike traditional planning where only the wage earner insurance is considered. So insurance needs of both the parents should be identified and planned. Also, this is the most effective way for leaving a higher corpus for child care and forms a major source for funding the trust in case of contingencies.

Cash Management and Budgeting

Budgeting involves identifying child expenses separately. This helps parents become aware of the regular financial requirements for the child that may be accommodated in their day to day finances. By identifying child expenses separately a more accurate estimation of the financial requirement for the child can be done.

Cash Reserves with Special Needs

Families with a special needs child may have to plan additional cash reserves than just 4-6 months expenses as advised in traditional planning. The higher cash reserves are meant for situations like sudden disability, change in caregiving requirements, and expenses for child’s medical support etc.

The Guardianship

Appointing the right guardians is crucial for special needs children families. Until parents are alive they assume the role of guardians. Once the child reaches 18 they have to obtain legal guardianship from the court. But it is more important to identify a suitable guardian to look after the child’s needs, as desired, after the parents’ death. Parents need to make the guardian aware of the child’s requirements and behaviour. After ensuring the identified guardian’s capability and willingness to take responsibility, take consent and make it official.

Retirement Planning

This is critical as parents with a special needs child will have to plan retirement differently. They might have to relocate, cut down on lifestyle expenses. Many a time parents have to delay their retirement to ensure their child’s needs are taken care. Identifying the funds required and options for residential needs of the child needs to be included in retirement planning.

The article first published in the book ” Financial Planning for families having children with special needs”

About the Author

Jitendra P.S. Solanki

Jitendra is a SEBI Registered Investment Adviser (INA10000184) and has earned the much-respected professional designation of Certified Financial Planner (CFPCM ) and Chartered Trust & Estate Planner (CTEPTM). He is a post graduate from IIT – Roorkee and has spent 15 years in Financial Services Industry working with leading financial institutions & Banks, advising families on their Financial well-being. Jitendra specializes in advising families with special needs children on various financial & legal aspects.

2 Comments

Your views have been very elaborate would like to meet you once for financial planning for our daughter who is a special child.please let me know how to connect to you. Thanks a lot

You can call me on 9971845454 to discuss.

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Raising a child on your own is never easy; especially when your child has special needs. It’s said that a single parent carries both the challenge of meeting all of their kids’ needs and ensuring that they receive the proper medical care and attention for their health concerns.

How To Support A Child With Special Needs As A Single Parent

Thus, solo parents are believed to carry a heavy burden upon their shoulders and have to support their children and themselves no matter the circumstances are which in itself seems like an insurmountable responsibility to take on.

But the good news is that you don’t have to do it alone. There are simple ways a simple parent like you can support your child with special needs without compromising one’s wellbeing and sense of identity. Check them out below.

How to be an effective special needs parent

Know More About Your Child’s Condition

Before thinking of ways to support your child, it’s best to arm yourself with the proper knowledge about their condition.

For instance, if your kid is diagnosed with an Autism Spectrum Disorder (ASD) or other related conditions, identify how to provide appropriate care for their needs with the help and guidance of a licensed medical professional. Read books or reputable online sources to gain useful information.

Only by finding out what your child has, can a parent like you will know how to support their kids better.

Join A Support Group

It’s also critical that you reach out to a community of solo parents with children who have special needs just like you. Understand what you have in common with other group members and form relationships with them. Learn how to support your child better by trading tips on the best and worst practices in raising a special needs child alone during group sessions.

It’s said that similar shared experiences can help foster stronger and more fulfilling connections. You may be able to find the understanding you’ve been longing for from people that you have something in common.

Search online to find support groups nearest you. If not, look for similar groups that do their meetings online in the meantime. These groups often have their own page on social media platforms. Some offer parent knowledge resources that offer useful information in exchange for a small fee. If you want to save on some online learning costs, you can bond with other parents by looking for free parenting courses from Yo! Free Samples and other similar services.

Joining a support group is believed to help solo parents equip themselves with enough knowledge on both child-care and self-care strategies.

Seek Help From Family Members And Friends

Many think that asking for help is a sign of weakness or giving up but one shouldn’t have this mindset. On the contrary, it means that seeking help aid in building up additional resources useful for your child.

You may consider yourself as the best multi-tasker in the world, but it may not be enough to get you and your kid by, what with the doctor’s appointments, therapies, and homeschooling all more than enough to keep your hands full.

It’s recommended to ask your family and friends for support. Your older children can help you out with a few errands, for example, while you focus on your child with special needs. Or, you can ask a trusted friend or loved one to keep taking care of your home while you’re taking your child out for their therapy sessions.

Some local governments have special programs for single parents of a child with special needs. Find out in which assistance programs you may qualify for and start fulfilling your legibility requirements to obtain much-needed added support.

How to be an effective special needs parent

Take Care Of Yourself Too

Make time for yourself in order to take care of others. As a single parent to a child with special needs, you may sometimes think that you’re racing against time to accommodate your kid’s needs and everything else that you need to do.

It’s advisable to take time to stop and realize that you need to empty and recharge yourself before you get exhausted. This can be done by enforcing different time and task management strategies in your household.

For instance, make sure that you establish an early sleeping time for your kids. As a result, you may not need to stay up until the wee hours of the morning just to do what you want to do like taking a long, warm bath or watching your favorite show uninterrupted.

If you’re feeling overwhelmed, ask a friend or a family member to take on your role even for just a few hours while you get a relaxing massage or any activity that would make you feel recharged and revitalized.

Don’t Be Too Hard On Yourself

There’s no way to be a perfect parent and that’s believed to be especially true for guardians of children with special needs.

Teach yourself as you understand more things about your child and their condition. Don’t spend too much time regretting things that have been said and done. Committing errors of judgment while taking into consideration what’s best for your children is acceptable. Instead of sulking on your mistakes, recognize your gaffes and learn from them before you move forward.

If you’re too hard on yourself, there’s a chance that you may radiate off that energy to your kid. Make your time with your child memorable by allowing for playful interactions between you two and other members of the family. This can help everybody to create lasting and fun memories that may serve as an inspiration to fully take on the challenges that lie ahead.

The Wrap Up

When it comes to supporting your child with special needs, it’s believed that there’s no one-size-fits-all rule to follow. The whole process is considered to be both a rewarding and challenging experience full of hits and misses.

Once you take a more relaxed and proactive approach to parenting, you’ll become more forgiving of yourself and others. Ultimately, you’ll learn to be more flexible, calm, and patient-few of the fundamental traits needed in successfully raising a child with special needs.

How to be an effective special needs parent

By The Mom Kind

Alicia Trautwein is an Autism advocate, writer, motivational speaker, and dedicated mom of four. Alicia’s desire to advocate for Autism comes from her own autism diagnosis and that of her three children, niece, and brother. Her life’s mission is to educate on autism acceptance and change the world for future generations of autistic individuals.

Leave a Reply Cancel reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Raising a child on your own is never easy; especially when your child has special needs. It’s said that a single parent carries both the challenge of meeting all of their kids’ needs and ensuring that they receive the proper medical care and attention for their health concerns.

How To Support A Child With Special Needs As A Single Parent

Thus, solo parents are believed to carry a heavy burden upon their shoulders and have to support their children and themselves no matter the circumstances are which in itself seems like an insurmountable responsibility to take on.

But the good news is that you don’t have to do it alone. There are simple ways a simple parent like you can support your child with special needs without compromising one’s wellbeing and sense of identity. Check them out below.

How to be an effective special needs parent

Know More About Your Child’s Condition

Before thinking of ways to support your child, it’s best to arm yourself with the proper knowledge about their condition.

For instance, if your kid is diagnosed with an Autism Spectrum Disorder (ASD) or other related conditions, identify how to provide appropriate care for their needs with the help and guidance of a licensed medical professional. Read books or reputable online sources to gain useful information.

Only by finding out what your child has, can a parent like you will know how to support their kids better.

Join A Support Group

It’s also critical that you reach out to a community of solo parents with children who have special needs just like you. Understand what you have in common with other group members and form relationships with them. Learn how to support your child better by trading tips on the best and worst practices in raising a special needs child alone during group sessions.

It’s said that similar shared experiences can help foster stronger and more fulfilling connections. You may be able to find the understanding you’ve been longing for from people that you have something in common.

Search online to find support groups nearest you. If not, look for similar groups that do their meetings online in the meantime. These groups often have their own page on social media platforms. Some offer parent knowledge resources that offer useful information in exchange for a small fee. If you want to save on some online learning costs, you can bond with other parents by looking for free parenting courses from Yo! Free Samples and other similar services.

Joining a support group is believed to help solo parents equip themselves with enough knowledge on both child-care and self-care strategies.

Seek Help From Family Members And Friends

Many think that asking for help is a sign of weakness or giving up but one shouldn’t have this mindset. On the contrary, it means that seeking help aid in building up additional resources useful for your child.

You may consider yourself as the best multi-tasker in the world, but it may not be enough to get you and your kid by, what with the doctor’s appointments, therapies, and homeschooling all more than enough to keep your hands full.

It’s recommended to ask your family and friends for support. Your older children can help you out with a few errands, for example, while you focus on your child with special needs. Or, you can ask a trusted friend or loved one to keep taking care of your home while you’re taking your child out for their therapy sessions.

Some local governments have special programs for single parents of a child with special needs. Find out in which assistance programs you may qualify for and start fulfilling your legibility requirements to obtain much-needed added support.

How to be an effective special needs parent

Take Care Of Yourself Too

Make time for yourself in order to take care of others. As a single parent to a child with special needs, you may sometimes think that you’re racing against time to accommodate your kid’s needs and everything else that you need to do.

It’s advisable to take time to stop and realize that you need to empty and recharge yourself before you get exhausted. This can be done by enforcing different time and task management strategies in your household.

For instance, make sure that you establish an early sleeping time for your kids. As a result, you may not need to stay up until the wee hours of the morning just to do what you want to do like taking a long, warm bath or watching your favorite show uninterrupted.

If you’re feeling overwhelmed, ask a friend or a family member to take on your role even for just a few hours while you get a relaxing massage or any activity that would make you feel recharged and revitalized.

Don’t Be Too Hard On Yourself

There’s no way to be a perfect parent and that’s believed to be especially true for guardians of children with special needs.

Teach yourself as you understand more things about your child and their condition. Don’t spend too much time regretting things that have been said and done. Committing errors of judgment while taking into consideration what’s best for your children is acceptable. Instead of sulking on your mistakes, recognize your gaffes and learn from them before you move forward.

If you’re too hard on yourself, there’s a chance that you may radiate off that energy to your kid. Make your time with your child memorable by allowing for playful interactions between you two and other members of the family. This can help everybody to create lasting and fun memories that may serve as an inspiration to fully take on the challenges that lie ahead.

The Wrap Up

When it comes to supporting your child with special needs, it’s believed that there’s no one-size-fits-all rule to follow. The whole process is considered to be both a rewarding and challenging experience full of hits and misses.

Once you take a more relaxed and proactive approach to parenting, you’ll become more forgiving of yourself and others. Ultimately, you’ll learn to be more flexible, calm, and patient-few of the fundamental traits needed in successfully raising a child with special needs.

How to be an effective special needs parent

By The Mom Kind

Alicia Trautwein is an Autism advocate, writer, motivational speaker, and dedicated mom of four. Alicia’s desire to advocate for Autism comes from her own autism diagnosis and that of her three children, niece, and brother. Her life’s mission is to educate on autism acceptance and change the world for future generations of autistic individuals.

Leave a Reply Cancel reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Parents of a child with special needs must learn to effectively navigate the maze of special education laws and go to bat for their kids. In a nutshell, this means they must learn to be advocates.

Learn All You Can About Your Child’s Special Needs

How to be an effective special needs parent

Information is power, and parents need to start with the facts about their child’s special needs. Try and keep emotion out of it; parents need to have fact-based knowledge from their child’s doctors, specialists, special education experts, parents of kids with similar special needs, attorneys, teachers, and anyone else who can provide information.

Ask Lots of Questions and Listen to Answers

Become like a reporter: Ask questions like, “who, what, where, when, why and when” and then listen carefully to the answers you receive.

Research relevant questions and then document responses instead of simply relying on your memory.

Learn how to best ask questions and don’t come across as antagonistic or defensive to get the best open and honest replies.

Become a Pseudo-Lawyer in Special Education Law

Parents of special education kids don’t truly need to become lawyers; however, it is good to become extremely knowledgeable about special education law. Learn the details behind the federal law that effectively created special education, now known as the Individuals with Disabilities Education Act (IDEA).

Always Avoid the Blame Game

An adversarial relationship between parents and teachers is typically never in the best interest of the child. It’s sometimes easy to fall into the trap of blaming others or even pointing the finger at bureaucracy for disappointments or a particular situation. But the blame doesn’t typically result in anything more than bad feelings and an ill-willed situation. Instead, avoid blame, and try the opposite approach. Keep calm, know the facts, and advocate about meeting your kid’s unique needs.

Be a Problem-Solver, Not a Problem-Maker

Working together to solve problems with a child’s teacher or childcare provider typically nets better results than becoming a problem maker. Propose solutions or create a possible plan that works best for child-parent-provider/teacher. Be open-minded and hear proposed solutions from the educational side as well.

Think Long-Term and Become a Futurist

Parents not only have the responsibility of planning their child’s education and requirements today; they are also faced with the difficult task of thinking long-term.

In other words, parents must be active futurists in setting up their child’s successful life down the road.

Become a Master Planner

Parents typically have goals for their kids, and families of special education students, in particular, should establish goals along with a strategy to obtain them.

Really Get to Know Your Child Care Provider or Teacher

Don’t assume that childcare providers or teachers don’t want to meet your child’s unique needs and provide educational benefits. Most do. However, a wide range of need combined with limited resources often creates the potential for conflict between what reasonably can be provided vs. parents wanting what they believe is “best” for their kids. Parents and providers/teachers should do everything possible to establish a positive, partnership-based learning approach and team together.

How to be an effective special needs parent

Guest blogger Ellen Stumbo has been thinking about an issue important to parents of kids with special needs: how to be an effective advocate. In today’s post, she shares about how her perception of effective advocacy has changed and mentions a good book put out by Wrights Law, an organization that trains parents to advocate for their kids in school.

Am I an Effective Advocate?

Speak up for those who cannot speak for themselves, for the rights of all who are destitute.
Speak up and judge fairly; defend the rights of the poor and needy.

Proverbs 31:8-9

When Nichole was born with Down syndrome I began to learn as much as I could about her condition. I felt the need to become an expert and help educate people. I was passionate and vocal…really vocal. I had become her advocate, but was I an effective advocate? This is a thought I have been processing lately, because in order to see positive results, I need to be an effective advocate.

Advocacy in the Early Days

You see, when Nichole was a baby, I was learning how to be the mom of a child with special needs. Out of my great love for her, I wanted others to see her just the way I saw her. I wanted people to understand Down syndrome and see the beauty I saw.

Looking back, I believe that sometimes my “all-out” ways stunted me from being an effective advocate and perhaps even approachable. I know I spent energy focusing on weather people used People First Language, or if they used the correct terminology or up-to-date information. I did not expect people to be at the same level of awareness I was, but I think maybe I did expect them to arrive to the place where I was once I had explained the ins and outs of Down syndrome. I wonder how many people felt overwhelmed by me.

I was learning to do life with Nichole, and the many layers of my life touched by Down syndrome. She is only 3 years old, and I still have a lot to learn. However, Down syndrome is so common for me, and for our family, that I believe I can look more objectively at what an effective advocate is. After all, I now have 2 girls to advocate for. (Actually, make that 3, Ellie needs her mama to advocate for her at times.)

Advocacy Now

Why am I thinking about this right now? I just got the book From Emotions to Advocacy and I am learning about being an advocate in the school system. This book, however, has challenged me in the “personal level” advocacy, and the many times that I have allowed my emotions to take over. Effective advocacy happens when emotions are under control, it is hard to advocate when you are angry, or hurt by a comment or an action.

Advocacy to Change Lives

But being Nichole’s and Nina’s advocate means that I get to practice Proverbs 31:8-9. I get to speak up for Nichole and for Nina, for their rights, and for their needs. Why? Because I want to see Nichole and Nina’s lives changed, I want them to thrive! Regardless of their disabilities, they have great potential, they have gifts and talents to contribute to those around them.

How Have You Changed as an Advocate?

Can you identify with the change Ellen has been experiencing lately? I certainly can. What are some ways you’ve changed as an advocate? What tools and resources have you discovered? Share your wisdom by leaving a comment.