How to be an effective special needs parent

There’s often a rift in communication between educators and parents who suspect their kids have special needs. A parent describes the support that would have helped her initiate an assessment.

How to be an effective special needs parent

Even as young children, we’re able to identify a behavior that is not the norm for our peer group—the one kid in the class who seems a little more agitated than the rest, a little more loud and unruly. Across the room is a scared child. Another struggles with reading.

All of this may also be evident to a teacher, who can compare one child with his or her peers. But it may not be evident to the parent, who does not experience a whole classroom of children.

To the parent, a particular behavior may not seem beyond the norm. The first thing we parents observe is that our child is shy, or picky, or argumentative. We don’t observe that behavior and diagnose our child as anxious, having a sensory disorder, or oppositionally defiant. We see behaviors that we seek to modify, not categorize.

A Gap in Experience and Understanding

This opens up a rift in experience, understanding, and communication between parents and educators. Education specialists may speak in professional jargon that parents don’t always understand. An educator’s perspective on how a student’s behavior differs from that of his or her peers and on the demonstration of behaviors can be helpful to parents.

Parents are most often not mental-health experts, but they are experts in knowing their children. When they feel that something isn’t right, there’s reason to investigate. But most parents who have shared their experiences with me about asking for help for their children have not received it initially. Pediatricians may tell parents to be better disciplinarians. Teachers may say, “He doesn’t qualify for services.”

Many disabilities—most learning disabilities, most mental health disabilities, and many physical health disabilities—are hidden. A hidden disability is by its nature difficult to observe. Only someone trained in psychological assessment, using prescribed evaluation methods, can determine such a disability—educators generally don’t have this qualification.

State departments of education have standards for assessing and evaluating a child for special education services, yet being denied this assessment and evaluation is quite common. A discussion between the parent and teacher or principal may result in an evaluation, but parents are often forced to make repeated requests to push the issue. Parents may also not understand that requests for evaluation must be in writing.

Parents new to the individualized education program (IEP) process are then confused and angry. Worse yet, some parents accept the initial denial, and then the child does not receive an evaluation.

These problems generally occur because educators lack knowledge. In preparing general education teachers, most education programs don’t require a class on children with exceptional needs (gifted, special education etc.). States have tests and other assessments to evaluate the knowledge of an education program graduate, but even so, a teacher may not be able to recognize special needs or have knowledge about state regulations.

Parents look to teachers and principals to be experts. Not knowing what to do when a school declines to evaluate a child is a common dilemma for parents of children who are struggling. Advocacy groups may help, but a parent would need to understand that external help is available before they would seek it out. Many parents don’t understand the obligation of the school to evaluate their child, and they may not know how to push through a request for evaluation when facing resistance.

Directing Parents to Organizations That Can Help

It would be helpful if school staff referred parents to the appropriate state advocacy organization listed by the Center for Parent Information and Resources. This would steer parents toward a group that could help them to find answers.

In Kansas, our parent group, Families Together, answers questions, holds informational and training sessions for parents and education advocates, and shares documents to inform parents. No one in the school environment let my family know that this group existed, and it took us several years to find it. During that time, we felt isolated and confused. If only a teacher, principal, or district staff member had shared this information.

Hopefully a parent can initiate an assessment and evaluation. He or she will then be accosted with a host of acronyms and other special terms such as IDEA, IEP, BIP, and 504.

My personal experience has been that at no time were the evaluation process or special terms like IDEA, IEP, or 504 explained to me, and I have yet to encounter a parent for whom this did occur. The process of getting help for a struggling child is bureaucratic and complicated, and for the most part educators don’t mentor parents through it.

If they haven’t located an education advocacy group for assistance, parents usually lack the understanding needed to represent their children well through this process. Following an assessment and evaluation of a child, which requires special services to support that child’s education, the next step should be educating the parents about this process. Even a district FAQ website would be helpful. Parents should be part of their child’s education team, yet how can one contribute without a good understanding of the framework for special education services and an understanding of how accommodations can be implemented to help a child succeed?

Some educators and schools are amazing. But as a college professor and a parent of a child with an IEP, I have met students who have not been supported through the K–12 years or who received only minimal support to get them through the system. We can do better, starting from the first time a parent approaches a teacher and says, “I’m worried that Olivia seems to be struggling.”

Being a parent isn’t easy in any way.

The saying goes, having kids will not only be the most challenging thing you’ll do in life, but also the most rewarding. As a parent, you take on a tremendous responsibility for your child’s well-being. Everything you do and say helps to shape or hinder your child’s development and personality. The job becomes even more challenging when you have a child with special needs.

A parent’s role is ever-changing where every day is a new day with a new set of challenges, and a new set of praises as well. You have to give love, support, and guidance to your loved ones through the easy and tough situations throughout their lives. But parents are amazing and with a little help, you can do it and be an excellent parent for your child.

Learn More about Your Child’s Needs

Knowing the specific needs your child makes taking care of them a little easier. The more you know about their needs, the better you can prepare to help your child. Learning about various autism and disability needs will also broaden your perspective.

If you don’t learn, you will focus more on what your child cannot do. You will constantly compare your child with another child. It’s not only unfair but also counterproductive and will hinder your child’s development .

Be Positive

Just because your child has a specific way of doing things, it doesn’t make him/her unfit. They do certain things differently and that’s absolutely okay! Don’t get upset and look down on your child. Embrace the new normal, stay positive and fair.

It wouldn’t hurt to adjust the expectations you have set. Having a special need doesn’t mean being unsuccessful in life. You also need to be mentally and emotionally strong for the sake of your child.

Get a Referral for Evaluation

In most cases, it’s the teachers who give a referral for a child’s evaluation of any special needs. If you notice or feel your child needs an assessment, It’s best to seek out a professional. The specifics around your child’s special needs will be revealed in the evaluation. It will help you understand your child’s differences so you can plan for his/her future better.

Enroll in Special Needs Education

As a parent, you want to give your child the best education possible. So, make it a priority to enroll him/her into a special needs class. That way the teachers can prepare your child for an Individual Education Program (IPE). The IPE is specially designed to help children with specific needs.

Help with Homework

Set a specific time for doing homework with your child. Ask questions and be patient while they figure out the answer. Don’t forget to praise them for their right ones. This will encourage their learning drive and make them more confident.

Help Build Self-Confidence

Children don’t like to think that they are different. It puts a dent in their self-confidence and makes them struggle in the classroom. This doubt will also affect how they interact with their peers. Talk to your child and try to understand why they are feeling down and encourage the dialogue. Through this process, they feel unheard and most importantly, shows to them that you genuinely care about their well-being.

It’s only natural that everyone will have strengths and weaknesses. Make them feel positive by teaching them not to give up. Set small day-to-day goals and by completing them daily, they will build up their self-esteem and rebuild their confidence.

Focus on the Big Picture

You are preparing your child for a better future. Perhaps it means having a job and a family and goes beyond just getting good grades in school. So, the main focus should be on helping your child become independent. So help your child succeed in life and not just in school.

Setup Discipline

Your child may have a special need, but he/she also needs discipline in life. This means that they need to understand and respect the rules set by their parents/guardians. You might need to adjust a few of them along the way to help their learning process.

Build a healthy life

Develop a healthy lifestyle that best suits your child. Possibilities around eating healthy, doing exercises and sleeping on time are some that helps encourage a healthier life. Also, perhaps helping your child to play outside can be another component that helps to improve their social skills. It will also help keep their mind fresh and focused.

Make sure your child is getting proper nourishment. Having a healthy meal plan is vital for their growth and development. Remember that children need a healthy amount of sleep to rest and recharge so we recommend to catch those z’s early!

Cut off screen time to make sure your child is adequately rested. A sleep-deprived child will have trouble learning in school. We encourage setting a bedtime routine, introducing it slowly, and transitioning your child to follow it.

Allow Independence

You don’t need to babysit your child 24/7. Let them grow into their unique personality. Allow them some independence but if you’re not sure how much, please work with your respective clinical treatment team to assess what would be realistic for your loved one.

Take Time for yourself

Don’t forget to take care of yourself. It won’t do anyone any good if you burn yourself out while tending to your child’s needs. You need to be emotionally and mentally fit to create a healthy life.

Your child depends on you. You won’t be much help to your child if you are exhausted and stressed. So please take time for yourself. Do something fun that helps you relax. You should also eat healthy and squeeze in a good amount of sleep.

If possible try and join a support group. Talking and sharing about daily struggles will help you realize that you’re not alone. Other parents facing the same struggles will encourage and support you. Besides, you might learn a few new ways of helping your child thrive.

Ask for Help

You don’t have to be a supermom or superdad all the time. Ask for help. Your spouse, family, and friends can help lighten the workload. So, don’t shy away from delegating a few tasks to your trusted circle of friends and family.

Not all days will be the same. There will be good and bad days. Think of your family as a team, because you alone cannot win this battle – proper teamwork and support from your village will!

Final Thoughts

Raising a child with special needs can take a toll on you. Nevertheless, you play an essential role in your child’s development. You are your child’s best guide and role model.

We hope these pointers will help you plan a little better in taking care of your loved one.

Nearly nine years ago I gave birth to a beautiful baby girl named Claire. I had all of the standard prenatal testing that my doctor recommended and had a very easy pregnancy and delivery. So, it was no small surprise when just before we were set to be discharged from the hospital a neonatal nurse told my husband and me that she thought something was wrong with our baby and we would not be able to take her home.

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Although it took a couple of years, we finally got a diagnosis of a genetic disorder so rare it has never been written about in any medical journal and we have only been able to identify one other person with the same genetic disorder in the entire world.

Claire’s birth, and the host of developmental and medical issues that accompany her syndrome, thrust us into a world I knew nothing about and never wanted to be a part of. The family and friends who supported and surrounded us were given a glimpse into the world of special needs as well and often struggled about how to help and support us. Often they did not know what to do, what to say, or how to act around us which made for awkward moments. Even almost nine years later some do not know quite how to react to preteen who cannot speak or feed herself, wears diapers, bites and pulls hair, and uses a wheelchair.

If someone you love, know, or even come into contact with casually has a child with special needs there are some things you do to better support your friend.

1. Ask specific questions. I love it when people ask about my kids – all parents do. When people ask how Claire’s siblings are doing it is easy to talk about how the baby is about to roll over or about how my first grader has recently tackled reading chapter books. It’s even easy to talk about how my 4-year-old is going through a streak of being fiercely independent and ask for advice. But with Claire there are always a lot of things going on, some good and some bad, and most of which no one without a child with special needs can relate to easily. Asking specific questions makes it easier for me to know where to start. If you ask about how her physical therapy is going or if she has learned any new signs I’m more likely to answer with more than “fine” since you’ve let me know what you are interested in hearing and given me a starting point.

2. Be inclusive. Although a child with disabilities may be limited in what she can do, there are likely still plenty of things she can enjoy. Claire enjoys playgrounds and movies but not all playgrounds and movies are appropriate for her. Asking us if we would like to meet at a playground that has adaptive equipment or to see a sensory-friendly showing of the latest kids’ movie sends that message that you want to include our entire family on outings. While I certainly don’t expect all activities to be planned around my daughter’s needs putting a little extra thought into how she can be included goes a long way.

3. Be respectful of parents’ needs. As much as I appreciate being asked about Claire and any attempt to include her, I sometimes I need a break. Other times I need to let off steam. There are many times when things are not going well — when she’s not reaching another milestone, when she facing another surgery, or when I am facing another battle with insurance. During these times I may be consumed with her care and just need a break or I may need to talk for a half-hour straight about a current struggle. If I don’t seem to want to talk about Claire, respect that I don’t want to think about special needs for that moment and would rather talk about which show I am currently binge watching instead. Or, if I need to rant for a half-hour about how Claire’s insurance denied coverage for her hearing aid, wheelchair, or ABA therapy just humor me. I’ll feel so much better when I’m done.

4. Offer to help. Life can be overwhelming for everyone at times but these times tend to occur more frequently when a child with special needs and the stress that comes along with her care is thrown into the mix. Offering to tag along to a pediatric therapy session with a Mom or Dad still learning how to navigate the world of special needs, putting a parent in touch with another local family with a child with special needs who may know about great resources, watching other children so a parent can spend a little more time at a doctor’s appointment, bringing over dinner for when a child is sick, or even bringing a Mom some coffee and magazines when her child is in the hospital can be enormously helpful.

5. Treat us normally. Parents of children with special needs often face challenges our friends with typically developing children do not. But, friendship is a two-way street. Just because Claire will never learn how to add doesn’t mean I’m not interested in hearing about your child is a whiz at algebra. Your child’s achievements and struggles are just as important as my child’s and I don’t expect you to support me without also being there for you when you need someone with whom you can share your own parenting frustrations or your child’s accomplishments.

Parents of children with an intellectual disability can face significant challenges, especially during the adolescent years. With our Special Needs Programme you can support parents to manage these challenges, improve their family’s well-being and strengthen their links with other parents.

This programme is practical, solution-focused and draws on parents strengths. It is suitable for parents who are raising an older child or adolescent with a mild, moderate or severe intellectual disability, and who may also have an additional diagnosis, such as Autism Spectrum Disorder (ASD) or a physical disability. See here for more information on who the Special Needs programme is for.

It is flexible and can be delivered over 6-12 weeks in small groups or with individuals.

By training as a facilitator of this programme, you will learn how to support parents of an adolescent with special needs to:

  • Manage behaviour and emotional problems
  • Deal with puberty, sexuality and relationships
  • Reduce their own stress as parents
  • Support all relationships in the family
  • Build self-esteem and confidence
  • Advocate for their child or adolescent
  • Support education and development
  • Prepare their child for adulthood and future transitions

The Parents Plus Special Needs programme is a MOMENTOUS piece of work that will have real benefits for families with children with special needs. ParentsPlus have a strong track record and really impressive results delivering positive outcomes for families. As we come out of the pandemic, the support of the new Parents Plus Programme is needed now more than ever. This will make a real difference to family lives on a daily basis.

Minister for Children, Disability, Equality, Integration and Youth, Roderic O’Gorman TD, Speaking at the launch of PPSN

What you will Learn

The Special Needs facilitator training is practical and solution-focused and will provide you with the essential skills and learning to achieve the best outcomes for the parents and families who attend your service.

The training focuses on:

  • Developing an in-depth understanding of this programme
  • Delivering the programme via face-to-face and online sessions to groups and individual families
  • Providing opportunities to observe and practise the skills to become a solution-focused facilitator
  • Building on parents strengths as a basis for ongoing change
  • Strengthening inter-agency and community partnerships

The Parents Plus Special Needs Programme is without doubt the solution to the crippling problems that parents of adolescents and young adults with I.D. need. The programme will change the future for children with special needs, their parents, their families and their communities. It should be compulsory and offered to every family affected by special needs. It really is that important.

Eleanor Kent, Social Worker

Facilitator Training
The next available facilitator training for this programme starts on 2nd Feb 2022 and consists of three online workshops delivered via Zoom. Participants are also invited to complete a short assignment between workshops. The Training schedule is:

2nd Feb 9am-1.30pm
Goals, Background, Evidence-base, Course Content
4th Feb 9am-1.30pm
Groupwork and Session Delivery Practice
9th Feb 9am-1.30pm
Individual Sessions, Getting Groups Started, Dealing with Challenges

Parents Plus offer a small number of part-sponsored places on the training when accessing finance is difficult.