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10 recommendations for parents of children with disabilities
We would like to share some recommendations by Dr. Darla Clayton, PsyD in clinical psychology from Indiana University of Pennsylvania and a mother to two fantastic children, a son who has cerebral palsy and a daughter. She has put her thoughts in simple words for parents with similar situation. We hope that many parents will find these valuable recommendations useful and helpful in raising their children.
1) Remember that you are not alone.
There may not be anyone else with exactly the same symptoms as your child but there are people with similar challenges. Try to find those people. You can make friends with them, and you can be a great deal of support for each other because sometimes just speaking out to someone who understands you is like a therapy. Besides, when you know that you are not alone – it feels much better.
2) Make time to enjoy your kids
Super parents 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. They are kids above all.
3) Don’t blame yourself.
Many parents whose children were born with disabilities keep feeling guilt throughout their lives. It never ends well. Forget it. It was never your intention. You never committed a crime. You are a regular parent of a special child. Focus on making life easier for your child, stop eating yourself. Kids need joyful parents, not guilty ones.
4) Being a parent is hard. Being a parent to a child with extra needs is extra hard.
It can also be extra rewarding. Make 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. Besides, there is usually no end to this, so you will feel like a marathon runner. Have a gasp of breath a sip of water and go run again.
5) Don’t lose yourself.
Don’t let being the parent of a special needs child create or reshape your identity. Being the parent to a child with special needs is part of our identity. But it shouldn’t be all of it. 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 book, a hobby, shopping for yourself.
6) Celebrate the little things!
Brag about those accomplishments that might seem small to others but are huge for our kids! Our 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.
7) 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 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 kid.
8) Don’t compare.
This is another challenge, but worth the work. 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 their own individual strengths and challenges. Keep that in mind.
9) Make time for your marriage.
Parenting is hard work, period. Parenting a child with special needs, is especially hard work, period! But, marriage is your work, too. For those of you who are married or in a relationship, make time for that relationship away from your children.
10) Trust your instincts.
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.