We didn't have any relatives with severe disabilities. No brothers or sisters, cousins, or extended family with the sort of problems we were facing. We were ignorant simply due to inexperience, not because we didn't care. We had a crash course of dealing with disabilities to learn!
It begins with the diagnosis, and when it's a baby you are trying to figure out it can be so frustrating. Babies can't tell you what is wrong except through how they respond to you. They can only react. It can be hard to tell whether they are crying because they are hungry, wet, hurting, or sick. Often times you only notice something isn't quite right when they fail to make their "milestones" as they grow.
Our grandson had a small head, a sign of his microencephaly, and it became more apparent as he got older. He didn't roll over, pull up, or try to mimic sounds. He was a fussy baby, didn't sleep well, had trouble swallowing causing a problem with eating. So what do you do? Deal with one problem at a time. We learned it will quickly overwhelm you if you are trying to solve everything at once. If the child has multiple problems, work on the most serious one first. As you learn how to take care of that one, move on to the next. Breaking things down into smaller bites will make it much less scary and hopeless.
It is important to involve the whole family in the process of learning how to help you child thrive. Don't get bogged down in trying to be the super hero for them. You will only set yourself up for exhaustion and burn out. They need so much time and attention, and especially love. We sometimes feel like we are protecting them by isolating them. We are robbing them of so much when we do this. Ask yourself how you would like to be treated if it was you instead of your child. Include them in your family's life and activities. You will also have to learn to deal with the stares and questions of strangers. Sometimes it can seem hurtful or rude, but remember they probably don't have a handicapped family member so it is ignorance not malice. Educate them gently. You'll be doing us all a favor.
What will tomorrow hold for your child? Will they grow up to be independent? Will they live long enough to grow up? Will they always be able to get the care they need? Will you be able to hold yourself together to care for them? These questions are so frightening. I have learned to handle today. It is the only day I can live at a time. I can pray for the tomorrows that may come, but I must deal with today.Growing Old Does Have Its Problems
How To Add Vitality, Joy and Years To Your Life!
Realizing You Have Become A Senior Citizen
How Can I Be a Work at Home Grandparent?