When a couple is blessed with a child, they think about all the fun they will have nurturing the baby and teaching the child everything they know. Sometimes the parents get a wake-up call that stops them in their tracks—the flu, a late milestone, or in some cases a diagnosis of something that most people have never heard of, or never knew existed.
Special needs is an umbrella term for a wide array of diagnoses, some resolve quickly, others are a challenge for life, some are relatively mild, others are more profound. The term special needs can include, but is not limited to developmental delays, medical conditions, genetic disorders, learning disabilities, autism, Down syndrome, cerebral palsy, or a physical handicap. They all require special accommodations, so the children can reach their full potentials.
No matter the reason, the diagnosis is useful. It can help parents obtain the needed services, set appropriate goals, and gain an understanding of the child and the stresses the family may face. Often, a stressed child will find himself in a stressed home or school environment. True the stressful environment may have been caused by the child with special needs, but the end result is that the child finds himself having to deal with stressed out adults, which is the last thing he needs.
Special needs are commonly defined by what a child can’t domilestones unmet, foods banned, activities avoided, or experiences denied. These hindrances can hit families hard and can make special needs seem like a tragedy. Some parents will always mourn their child’s lost potential and some conditions become more troubling with time. Other families may find their child’s challenges make triumphs sweeter, and that weaknesses are often accompanied by amazing strengths.
Special needs is a very broad term and every situation is unique. Families should focus on seeking the help and guidance needed for their particular concerns.
Parents, caregivers, and teachers are generally the first to realize that a problem exists. When you think about it, psychiatrists, therapists, neurologists, and physiatrists do not stand on street corners, and randomly pick children to evaluate.
Rather, kids are sent to doctors because other people have noticed a problem. Those people, namely parents and teachers are the ones on the front line. When they notice there’s a difference-that’s when the parents seek the help of psychiatrists, neurologists, etc.
Developmental disabilities can change a parent’s visions of the future and provide immediate difficulties in caring for and educating the child. Diagnoses like autism, Down syndrome, and intellectual disabilities often cause children to be removed from mainstream settings and schools. Quite often, parents become fierce advocates to make sure their children receive the services, therapy, schooling, and inclusion they need and deserve.
Learning issues: children with learning disabilities like dyslexia, an auditory processing disorder (APD), struggle with schoolwork regardless of their intellectual abilities. They require specialized learning strategies to meet their potential and to avoid self-esteem problems and behavioral difficulties. Parents of learning-challenged kids need to be persistent. This includes working with the child at home, as well as with teachers and schools, to ensure they get all the help they need. They may want to remove the child from a mainstream school and put him in a school that specializes in this area.
Children with behavior issues may not respond to traditional discipline. A diagnosis of ADHD, dysfunction of sensory integration, autism, or Tourette syndrome require specialized strategies that are tailored to their specific needs. Behavior issues can increase the risk of problems at school. The parents need to be flexible, creative, and patient.
Children’s medical issues can include, but are not limited to, serious conditions like heart defects, muscular dystrophy, cystic fibrosis, and other genetic diagnoses. A child may need frequent medical testing, hospital stays, equipment, and accommodations for disabilities. Establishing a good support system is very important when dealing with the uncertainty of any medical crisis.
People will share what they feel is helpful. They will want to try and fix your child’s challenges for you. They may also share their absurd ideas. Take these ideas with a grain of salt, pondering the advice you think might prove useful. Although every child’s special needs are different, and every family is unique, there are some common concerns that link parents. These include getting appropriate care and promoting acceptance in the extended family, school, and community. For some, planning for an uncertain future may be necessary.
Parents might also find themselves adjusting routines and expectations. Sometimes, quite often out of necessity, parents of children with special needs may be more flexible, compassionate, stubborn, and resilient than other parents.
While it may not be something parents had hoped for or expected, it is important for the child that the parents do their best. As parents, you will learn more about yourselves, once you take ownership of the process of dealing with the diagnosis. It is going to be quite a ride, but take comfort in the fact that you’re not alone. So, feel comfortable reaching out for support and as crazy as it sounds now, one day you might want to share your failures and successes to help others.
What happens when you’re out with your kids and they see someone who acts differently, but has a seemingly typical appearance? What happens when they see someone older than they are who walks funny and is drooling? What happens when they see a child that is clearly not like them and can’t talk but maybe makes funny noises? How do they respond? Do they stare, make faces or possibly make fun?
The problem with intolerance begins when we make judgments based on what we think we know, rather than on what we know. In turn, those judgments get passed on to our children. As parents, we want to set a good example for our sons and daughters, but sadly, this is not always the case. Often, we pass judgment when we don’t have all the information.
I am a mother that has children with special needs. They have a complex mixture of issues to manage. I’ve had more than my share of strange looks, rude comments, and feelings of isolation from some family members, friends, and strangers over the years.
It’s typical in our society and our community to judge what we see, which can lead to constant criticism. In my case, my children’s disabilities are clear for everyone to see— but, what about the disabilities that are sometimes hidden for example; autism, Tourette syndrome, some genetic disorders which are not necessarily obvious just by looking at the child.
No matter how old children are, they want to be accepted by their peers. They wish to have friends with whom to eat lunch in school, be invited to play dates, and simply have someone to talk to in school. How much more important is it for a child that is different to feel accepted.
Regardless of age, appropriate social skills are critical when it comes to being accepted. Some people with autism have difficulties verbalizing their thoughts and being part of the group. They want to fit in, but often don’t know how. They may also lack the ability to read body language or pick up on social cues. Someone with Tourette syndrome may exhibit verbal or physical tics that could cause other kids to become scared or confused or just perceived as strange. A child that has a physical disability clearly stands out from the rest.
Promoting friendships amongst special needs and atypical children is not easy but is priceless for both children involved. One of the biggest obstacles in promoting such friendships is the social taboo. This taboo can be overcome by educating children about disabilities. Like everyone else, children are often scared of the unknown. When they are unfamiliar with children who suffer from disabilities, they are more likely to shy away from them. Acceptance begins at home, as parents, we have many teachable moments, including the lessons of tolerance and compassion. Rather than shun the person who is different, educating all children will promote tolerance and acceptance of the differences between them.
Another important part of promoting friendships between special needs and atypical children is to try and treat all children as equally as possible. Every child is different and requires special care in one way or another, but it is important to avoid calling undue attention to these differences. By treating the children, the same way as much as possible they will feel as though they belong to one cohesive group, rather than feeling as though they are two groups of children merged together.
There is one thing that may need to be addressed—attention. Children with special needs often require more attention than an average child, which can make the typical child feel left out. This feeling of isolation may lead them to act out, either by ignoring the child receiving the attention or by misbehaving to compete for the attention. If both children can participate in the activity, for example therapy, games, and baking then it is best to include everyone, even if it is geared toward one child or another. This inclusion helps build relationships and promote an understanding between the children.
Once educated, children are often forgiving of the differences in others. With the proper knowledge and the right amount of attention, all children will learn how to build lasting friendships with one another. My children, like all children with special needs, are gifts to this world. They are sweet, loving, non-judgmental, and pure—qualities, we want all children to possess. While they have other traits that prevent them from fitting in as easily as most children, it doesn’t make them any less special or less deserving of getting the most out of life and being treated with respect, compassion and dignity like everyone else.
When parents have a child with special needs, they grapple with all sorts of emotions. At the same time, they have to learn to decode all the foreign language that comes along with it. If you are one of those parents, you might also worry that your child isn’t getting everything he/she needs. Know that your experience can be influenced by how you present yourself and your child’s needs, because information is power!
Parents need to start with the facts about their child’s special needs, while trying to keep their emotions out of it. Be current with fact-based knowledge from doctors, specialists, special education experts, attorneys, and teachers. C.A.R.E. for Special Children can help with deciphering, obtaining and understanding this information.
Ask a lot of questions like “who, what, where, when, and why.” Listen carefully to the answers you receive. Document the responses instead of relying on your memory. Learn how to best ask questions so they don’t come across as antagonistic or defensive. It’s the best way to get open and honest replies.
I know that approaching school teachers, administrators, doctors, lawyers, etc. can be nerve-wracking and downright intimidating, but you know your child best, you spend more time with him than anyone, and you are the expert, which is why you are your child’s best advocate. A parent’s perspective is invaluable and something only you can bring to the table. No one knows what is best for your child like you, so trust your instincts when something feels off, and don’t be intimidated. Fake your confidence if you must, find a source of strength to be that confident parent when talking to a professional. If you think your child needs more therapy, then ask for it. Call an I.E.P. (individual education plan) meeting and express your concern.
Under the law, and practically speaking, parents have the most power to influence their child’s school program, medical protocol, etc. Knowing your rights is one way to find the confidence you need. Be seen, it’s very important that you are seen in all the circles where your child is being serviced or cared for. Let the doctors see and hear you, let the teachers and school administrators see you at meetings and school events, and hear from you via email. Make friends with the doctors and their office staff, with the professionals, and teachers.
Smile when you see them and take the time to get to know them. Develop a connection, because remaining a presence tells them that you care about their efforts to help your child. Set emotions aside, (it’s not easy of course) and approach your meetings with schools or doctors, like a business negotiation. Keep a professional tone. Adopt an approach of cooperative problem-solving. Working with your child’s teachers, therapists, or doctors, typically equals better results.
Propose solutions or help create a plan that works best for everyone involved. Be open-minded and hear proposed solutions from the other side as well. While in the hospital, if you think you need to get all your doctors on the same page, ask for a team meeting. The worst outcome— you won’t get what you want. Even if that occurs, you’ve demonstrated that you’re an engaged and thoughtful parent, committed to your child’s best interest.
Bring backup, ask family members, friends, or your local community advocate to accompany you to these appointments, meetings, or events. The importance of their input may surprise you. It always helps to have a second pair of ears and another perspective. It also shows that you have support and a community advocate behind you.
Also, know your limitations. Advocating for your child with special needs can be very demanding, so it is important to know your strengths and weaknesses. It is especially important to pay attention to those weaker areas and find others who can assist you where you need it.
Time and time again, we see that when children are in the right environment in school, or getting the right care in the hospital, with the right doctors they thrive—and that is our goal. So, be a force for your child—a kind, thoughtful, and polite force—but a force, nonetheless, to be reckoned with.