“As special needs parents we don’t have the power to make life ‘fair,’ but we do have the power to make it joyful.”
Like most difficult situations in life, you never really know what it is like to raise a special needs child until you have one. And even then, like all children, special needs children don’t come with a manual, and raising them can be even harder to navigate. Special needs children often require more time, more patience, and more attention than an average child. Once more, they can also need medical care that is intensive and puts additional demands on a parent’s time. It is essential to be realistic about what you can and can’t control, to keep yourself both emotionally and physically healthy. And also, to take time for yourself, even if it feels wrong.
1. Appointments, Appointments, Appointments
Thank goodness there are special therapies to help children with special needs to be successful in the world. But those treatments often require additional time from parents. It isn’t just about the driving back and forth and sitting through therapy appointments; there are evaluations, meetings with specialists, and continual and endless reevaluations along the way. Sometimes it can feel like all you see is a waiting room or a doctors’ office.
2. Sometimes you Have to Lower Your Expectations
When you were pregnant with your child, you probably had everything down from their career to their college chosen, in your mind. Parenting sometimes requires that you temper your expectations and wants for your child against what they are capable of. And that might involve lowering your expectations for them.
When it comes to raising a special needs child, if you set your expectations of them too high, not only will it end up frustrating you and potentially leading to disappointment, you can fail to see when they do things spectacular. Raising a special need child means taking delight in the smaller accomplishments instead of focusing on when they fall short.
3. You Have to Learn to Ignore Criticism
It is usually the parents of perfectly behaved children who think they have it all figured out. What the parent of a special needs child realizes is that you can be the most impressive, educated, and loving parent in the world, but you can’t change those things about your child that might make them misbehave or act inappropriately.
As a special needs caregiver, you have to learn to ignore criticism and not take it to heart. No one knows what it is like to have a special needs kid unless they actually do. So let them judge your parenting and think that they can do better. You have to know in your heart that you are doing the best job possible with significantly more hurdles.
4. You Have to Develop a Thick Skin
Even though you have a special needs child, it doesn’t mean that when they are teased or made fun of, it doesn’t hurt you just as much. As a parent of a special needs child, you have to develop a thick skin and learn to turn the other cheek. People are going to gawk and stare. And there will be children who will bully and tease your child.
Focus on making sure that your child knows how to stand up for themselves and not to internalize what is said to them. If you are hurting for them, there is a great chance they are hurting too, even if they can’t show it. People can be ignorant and make poor choices, but those choices are on them, not on you or your child.
5. You Have to be More Patient With Their Learning Curve
Having a special needs child takes more time than average parenting. On top of all of the therapies and medical problems, teaching your child takes more repetition and focus. Whereas the parent of an average child might have to show their child how to tie their shoes a couple of times, it might take you one hundred times.
And they still might not get it. Creativity is a special needs parent’s greatest tool. Try not to get frustrated if they simply can’t catch on to something. It is okay to help them do things they can’t. And if they finally get it at some point, great. If not, accept it.
6. You Have to Practice More Acceptance
It is hard to accept those things about your child that you don’t like. Even people who have children without any special needs can wish their child had a talent, a skill, or looked differently. If you hold onto all of the things that you wish they could do, you are missing out on finding their greatest talent and making sure they do great things with it. Learning to accept those things your child can’t do will help you to see all the miraculous things they can.
7. Life Skills Trump Success Sometimes
While most of the other parents you know are grooming their children for Harvard or Princeton, you might be hoping that your child can make understand how to make change to be employed. Schools tend to focus on things like multiplication and how many words per minute your child can read. It is alright that you have set the goals for your child as “life skills”.
Focus on those things that will help them to be more independent in life rather than trying to get them up to speed on those things that probably aren’t going to help them. And the issues that will just create turmoil in your home. Your child’s teacher or school might have a goal for them, but you have your own.
And that goal is that they can live happily and productively. So pay attention to what you want for them and forget what others do. Other people don’t have to live in your shoes, or your child’s.
8. You Might Have to Prepare to Always be Mom and Dad
Depending on the severity of your child’s disability, it might be realistic that your child will never be able to live on their own and maintain their independence. Being the parent of a special needs child sometimes requires that you be mom and dad forever. Your child might never fly the coup and have their own life outside of your home.
And that is okay. If you can establish a relationship with your child, then it might seem like an obligation to others, but the secret you hold is that you get to have your child with you for the rest of your life. And you get to enjoy their company and relish in their happiness.
9. It is Frustrating, so you Have to Pick Your Battles
Although it would nice to say that parents have the patience of Job, that isn’t always the case. Sometimes your special needs child simply can’t or won’t follow the rules. And as much as you discipline them, and try to model for them, they aren’t going to always do what other kids do. That isn’t on you.
Try not to get frustrated with yourself or your child. Most likely, they aren’t trying to make you angry or upset. They just don’t have the capacity to walk to the same drum as all the other children around them. As frustrating as repetition can be, you have to temper it and pick your battles far more than other parents.
10. It can be Isolating and Depressing
While all the other moms and dads are meeting at the pool and hanging out, you are caught at a doctor’s appointment. Or, your child is not included because they don’t get along or play well with others. It is hard not to take that personally or to let it make you feel excluded and left out. It is difficult to have a special needs child because, as adults, your friends are usually based on your children’s friend’s parents.
But if your child has no friends or is socially incapable, then it is hard to establish new relationships as you progress in life. Instead of pushing people away or assuming they know they are hurting your feelings, reach out to other special needs parents who understand what you are going through. And ones who know the hardships associated with raising a child who might have greater needs than an average child.
As much as being a parent of a special needs child might make you different than other people, it makes you the same as those who are in a similar situation. And common life situations are a great way to make new and supportive friends in your life who will enhance your happiness.
You are NOT Alone
No one knows what it is like to be the parent of a special needs child until it happens. Raising a child who has special needs can be frustrating, tiring, stressful, and isolating. It is important to celebrate all of the things that your child can do and not focus on all the things that they are “supposed” to do, according to other people.
It is also essential to give yourself a break and know that you are doing the best you possibly can with some significant hardships. The other people who judge you or your child, haven’t a clue of all that you are going through and what you have to endure.
If you recognize all the wonderful beauty that your child possesses, those around you will too. And if you stop trying to make your child do and be what other people want, and just let them be uniquely them, then it will lessen your stress and allow you to enjoy your child the way that you should.
Get the Support you Need
Every child and every life is a blessing. So enjoy the blessings that your child has to offer, even if it isn’t what you expected or hoped for. Just because it wasn’t what you thought, that doesn’t make it any less spectacular. If you are having a hard time parenting your special needs child or are feeling isolated and alone, you aren’t.