Parenting a Special Needs Child

A child with special needs gets help from a variety of medical professionals, one of them being the occupational therapist. This article describes the role and purpose of occupational therapy in the life of a child with special needs, in the hope it will help parents to better understand what their child’s occupational therapist is aiming to achieve.

The Journey Towards Understanding

For parents with a special needs child, the journey towards understanding may begin before the child is even born. Chromosomal differences such as Down Syndrome can be detected prenatally, and other developmental disabilities can be predicted with varying rates of accuracy based on the parents’ genetic history and previous children.

The first thing that a parent with a special needs child should do is to get the facts about their child’s condition. Parents should speak frankly to their child’s doctor, asking any questions they have and voicing their concerns. Parents can also look for information on the Internet and at their local library or bookstore.

Special needs children can be divided into behavior cases, physical cases, and speech and language problem. Among behavior cases are Autism Spectrum Disorder (ASD), Attention Deficit Hyperactive Disorder (ADHD), Attention Deficit Disorder (ADD), Learning Disabilities, and other behavioral problems, while physical problems include Down Syndrome (DS), Cerebral Palsy (CP), Global Developmental Delay (GDD), and other physical disorders that affect their daily activities.

The Occupational Therapist

A child with special needs interacts and gets help from a variety of medical professionals. Among them would be an occupational therapist, a health care provider who helps patients overcome a wide range of mobility and dexterity issues.  He does this by training his patients in activities representative of their normal daily lives. The therapist first assesses the patient's conditions, defines specific activities or actions that present difficulties for the patient, and sets out a course of therapy to exercise those abilities. It requires several years of education and training to be an occupational therapist, and one who chooses to work with a specific population, such as special needs children, require even additional skills.

Goals of Occupational Therapy

The goals of occupational therapy for a child are to improve his participation and performance, and all of his “occupations” like self care, play, school, and other daily activities. The occupational therapist will assess the child and modify the environment or the way of doing a task to promote better participation and independence. Sometimes, the occupational therapist works with the child to help improve specific skills. They also work towards educating parents, teachers and others so that they can help the child to be more comfortable and to participate better in the community.

Some common strategies use various activities and even play, in order to teach the child new skills. An occupational therapist grades activities and makes them a little more challenging as the child learns the skill. They also give the child sensory input and cuing to help them perform well, plus teach various compensatory strategies to help the child to be independent.

The components that concern occupational therapy are:

Self-care: An occupational therapist will help a child perform and be independent in self-care skills like eating, dressing, toileting, bathing and grooming. They may also suggest some adaptations that will help the child to be independent or decrease the burden on the parents.

Play: An occupational therapist helps a child to participate and interact with others in play. They may suggest modifications in the position, mobility aids or modifying toys to help a child play.

School: An occupational therapist helps a child to participate and adapt to regular schools. He may suggest aids for writing, and other classroom activities to help the child participate equally with other children. A child with special needs may also require special furniture to help them sit and write better.

Environmental Modifications: An occupational therapist can suggest modifications in the home, school, or playground that will help the child to participate more easily. Helping the child to become independent early in life will encourage him to live independently as an adult.

Fine Motor Skills and Handwriting: An occupational therapist also plays a role in helping a child improve his fine motor skills and handwriting by identifying the specific deficits in the child and suggesting activities that will help improve those skills.

Splinting: Occupational therapists can also make simple splints to help the child perform activities in a better way.

Interventions for Behavioural Problems

Interventions for a special needs child that has problems in behaviors include Behavioral Therapy (also called modification of behavior) and a diet that is gluten-free and casein-free (GFCF). Positive reinforcements can go a long way with a child with special needs, so make an effort to “catch him doing something good.” Praise him when he acts appropriately or learns a new skill. Be very specific about what behavior he is being praised for. Also look for other ways to reward him for good behavior, such as giving him a sticker or letting him play with a favorite toy. Imposing punishment when the child does something wrong or displays unwanted behavior will also help to train the child's behavior. This can be done by isolating him from others or reducing rewards.

The GFCF diet was first developed for people with celiac disease, a disorder that involves a severe reaction to gluten in the diet.  Gluten is found not only in wheat products, such as bread and other bakery goods, but also in a wide variety of other food products.  Casein, a protein mostly associated with dairy products, also has the potential to cause severe reactions in certain individuals.  When used appropriately, the GFCF diet is safe and can help avoid these severe health problems.

The theory behind its use in autism is that if a person is having gastro intestinal (GI) responses to these products, the resulting inflammation may damage the lining of the intestine and lead to absorption of molecules that are not normally absorbed by healthy intestines.  Some evidence suggests that these molecules or the inflammation they cause can interact with the brain in ways that cause problems such as anxiety, mood abnormalities and mental difficulties, and perhaps worsen the behavioral symptoms of autism. Many families are trying this GFCF diet to help their children and they are seeing improvements. If you decide to put your child on the GFCF diet, it is important to pay attention to certain nutrients such as vitamin D, calcium, iron, protein, and fiber, which may be lacking in this eating plan.

20 Tips for Parents

1) You are not alone

No one else may have the same group of symptoms as your child, but there are those with similar challenges. Find those people. You can have a strong network within each separate diagnosis. You can make wonderful friends and provide a great deal of support for one another. You just have to pop into any Facebook groups and you will immediately be reminded, "I’m not alone".

2) You too deserve to be cared for

You are almost constantly placed in a position of caring for others. However, you still need and deserve to be cared for. You can ask family or friends to bring a meal every now and then, or going for a pedicure, or whatever else you enjoy doing. Whatever makes you feel special and taken care of, take the time to enjoy it, you are worth it!

3) You aren’t perfect and that’s ok!

No one is perfect. We all make mistakes. Try to shift your thinking: maybe there was a good reason you missed that appointment, maybe your kid had a tough day at school. Who knows? But beating yourself up isn’t going to change the situation, so try to move on…

4) You are a superhero

You may not leap buildings in a single bound or run faster than a bullet but you are a superhero nonetheless. Everyday, you manage situations that a regular parent would think are impossible. You stretch tight muscles, remember pills, inject and infuse medicine. You hold a hysterical child during terrible medical procedures. You deal with tantrums. You encourage your child to do things doctors told you they would never do; you never gave up hope. You are a therapist, nurse, doctor, friend and confidante.

5) Therapy is play

For a child, therapy is play and play is therapy. The best therapists find ways to make your child engage in challenging activities – activities that he would have baulked at -- by making it a game that he wants to play. Just do the same at home.

6) Play is therapy

This is different from number five. After being discharged from therapy, you can seek extra curricular activities for your child that would offer therapeutic benefits. He can play hockey, run on a track team, learn archery, and take swimming lessons. All of this is therapy. He will be learning, having fun and getting stronger.

7) Make time to enjoy your kids

Super parents tend to be fairly busy and often over scheduled. However, while everything on your calendar is important, it’s also important to make time to play, laugh, be silly, and just enjoy your kids. Read to them, snuggle with them, and engage with them with what’s important in their world. Make memories outside of hospital walls.

8) You will be obligated to make heart turning decisions

You will have to make painful decisions that leave you questioning everything you thought you knew or understood. Knowing that you are doing your best, remember number three. Talk about your challenge with others and trust yourself to make the best decision for your child. Make it and move on, don’t rethink it. Easier said than done, but worth a try!

9) You won’t always get it right

Many of the choices you are forced to make have no right answer, just the lesser of the hard and painful wrong choices. You will do your best but you won’t always get it right -- no matter how many sleepless nights you spend agonising over how to handle a situation.

10) Forgive yourself

Yes, you will screw things up sometimes, despite the very best of intentions. No amount of torturing yourself will make you feel better, nor will it help you to make better choices. Remember many of the toughest decisions have no right answer.

11) Being a parent is hard. Being a parent to a child with extra needs is extra hard.

It can also be extra rewarding. Your child makes you extra passionate. And will almost always make life extra interesting. With the challenges come the rewards. Sometimes you have to search your heart for the rewards, but they are there if you look for them.

12) Parenting a child with extra needs is like a marathon

For those folks who are trying to win a marathon, there are no breaks. If you want to stay in the race, you eat, drink and even pee while running. But your marathon will go on for the predictable future and beyond. So remember, you don’t need to win, just make it to the end. The guy who comes in last place in the marathon, he took breaks, he stood and drank some water, grabbed a quick bite, then got back on the road. Give yourself those moments, however brief.

13) Don’t lose yourself

Don’t let a special needs child create or reshape your identity. We are many things, and being the parent to a child with special needs is part of our identity. But it shouldn’t be all of our identity. When you focus all of your life, all of your contacts, all of yourself around your child and his needs, who you are can get lost. Find things in your life you enjoy doing, a hobby, shopping for yourself.

14)  Keep your sense of humor

Certain things get under our skin, we all have our issues. An example can be people first language. But if you’re not careful, you can become overly sensitive to so many things that people start to avoid your company. Statements like “I almost had a stroke” or “I nearly had a heart attack” are disconcerting to parents whose child has in fact had a heart attack or a stroke. However try to remember that people are not making these comments to offend or upset you.

15) Celebrate the little things!

Show off about those accomplishments that might seem small to others but are huge for your child! You child develops on his own clock, he learns many skills late and some he may never master. A wiggled toe that couldn’t wiggle before, a word, a sentence, a smile, a hug, whatever that milestone may be, share it with those who love you and your child.

16) Don’t let typical parents get you down

I know how hard it is to hear from parents that their child six months younger than yours is walking and yours isn’t. Or dealing with the well meaning stranger who asks why your 2-year-old is scooting around on his butt rather than being up on his feet. Try to remember that these people lack the context that we are constantly embedded in. Explain, teach, be patient, raise awareness among those who just don’t get it. And remember, typical parents deserve the right to brag too and their pride at their child’s accomplishments is not meant as a knock to your amazing child.

17) Don’t compare

All kids are different, typical, or with extra challenges, and they will grow and develop at their own pace. If a developmental milestone isn’t met as you think it should be, certainly talk to your child’s doctor. Comparing siblings, cousins, kids in the daycare class, or even comparing kids within the same disability type rarely serves to make you feel better. Your child is unique, and will have his individual strengths and challenges.

18) You don’t have to be “THAT” parent

You know the parent who spent 10 hours creating the amazing snack shaped like an animal with whiskers. The one who sends adorable treat bags every holiday. The one who finds the coolest gifts for the teachers every year. And whose child is always dressed in the cutest outfits that somehow never get dirty. If that’s the mum you think you want to be, more power to you! You will find that there are always enough of those mums in your kid’s classes to supply them with cute snacks and treat bags. Since you have bigger fish to fry, let them have all the glory!

19)     Make time for your marriage

Marriage is hard work. Parenting is hard work. Parenting a child with special needs is especially hard work! Make time for your marriage away from your child.

20)     Trust your instincts

You know your child best. Doctors, teachers, therapists are all fantastic resources, but if you don’t feel like you’re being heard, or your child’s needs are being met, it’s very reasonable to get a second opinion. Don’t be afraid to fight for your child and his needs. While the professionals are experts in their areas, you are the expert on your child.