The burden is great if you are a parent of a child with special needs. A recent study found that mothers of children with autism had levels of stress hormones comparable to soldiers in combat. Finances are often a struggle, as well as the school system, the medical billing, the ignorance from other people, and the lack of support. Frequently one parent, usually the mother, sacrifices her career to attend to the child’s needs with a resulting loss of income for the family. How can you be a good parent for your child with special needs when you are mentally, emotionally, and physically exhausted from all the stress?
To be sustained through the marathon of caring for a child with special needs, it is essential that parents attend to their own needs. Check out these tips that moms and dads who are coping with the ups and downs of life with a child with special needs can use to cope.
There may not be anyone else with the same constellation of symptoms as your child with special needs but there are people with similar challenges. Find those people. You can make wonderful friends and you will find—and also provide—a great deal of support within each of these.
You are placed in a position of caring for others nearly constantly. However, you still need and deserve to be cared for. That entails asking friends or family to bring a meal by every now and then or going for a pedicure, or a date night, 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!
No one is perfect. We all make mistakes. We can wallow in our goof-ups or move on! Try to shift your thinking, maybe there was a good reason you missed that appointment, that you were sure was on Tuesday but apparently was on Monday. Maybe your child with special needs had a tough day at school and just needed the night off. Who knows? But beating yourself up isn’t going to change the situation, so try to move on.
You may not leap buildings in a single bound or run faster than a speeding bullet but you are a superhero none the less. Every day, you manage situations that a regular parent would think are impossible. You stretch tight muscles, remember pills, inject and infuse medicine. You hold hysterical children during horrendous medical procedures. You deal with tantrums and meltdowns. And most often, you manage not to have a tantrum or meltdown yourself. You encourage your child with special needs to do things doctors told you he would never do but you never gave up hope. You are a therapist, nurse, doctor, friend, and confidante. You are not a regular parent.
As a super parent, you tend to be fairly busy and often overscheduled. 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, engage with them with what’s important in their worlds. Make memories outside of hospital walls.
Don’t let being the parent of a child with special needs create or reshape your identity. We are many things, 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 their needs, who you are can get lost. Find things in your life you enjoy doing, a glass of wine, a hobby, shopping for yourself.
Brag about those accomplishments that might seem small to others but are huge for your kids! Your kids develop on their own clock, they learn many skills late and some they 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.
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 their butt rather than being up on their feet. Try to remember that these people lack the context that we are constantly embedded in. Explain, teach, be patient, raise awareness amongst 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 kiddo.
Marriage is hard work, period. Parenting is hard work, period. Parenting a child with special needs, is especially hard work, period! For those of you who are married or in a relationship, make time for that relationship away from your children.
You know your children 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 their needs. While the professionals are experts in their areas, you are the expert on your child.
If you feel overwhelmed and you need help, please contact us.
American Advocacy Group is on the front lines every day, making positive change happen for people diagnosed with Autism, Down syndrome and a range of diagnoses across the continuum. As a leading advocate for all people with intellectual and developmental disabilities and their families, and the premier provider of the support and services people want and need, we understand the system and know how to take action in regard to your best interests.
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