Please read here to learn more about coping with an ill child.
Parents of special needs children often feel alone and unsupported. Many times, these families are bombarded by well-meaning friends and family who often say and do the wrong things. This may lead to the parent feeling overwhelmed or as if they are not "good" parents!
This is not the truth!
Having a special needs child is hard - one of the hardest things you'll ever have to do. But you, whether you believe it or not, you know more than you think you do. And you're tougher than you'd ever expect.
Here at The Band, we'd love to hear your stories - all of them.
Here are some tips for families of special needs children and people who love them.
If You Have The Special Needs Child:
The world of special needs is a vast and frightening one. Learning that your child has special needs can be terrifying, make you angry, make you sad, and leave you feeling helpless.
Here are some tips for coping with a special needs diagnosis.
Remember that your child is more than his or her diagnosis - he or she is a person.
Every person deals with a special needs diagnosis in different ways - there's no wrong or right way to deal with a special needs diagnosis.
Don't assume that having a special needs child is the end of the world - often times, these kids open the eyes of their world to the beauty of different.
Don't spend a gazillion hours on the internet researching all the possible complications.
If you want to research all of the diagnoses, do it the right way - through scholarly articles, published journals, and other reputable sources. These do not include article farm sites or personal blogs. The problem with the internet is that things come out very unfiltered; sometimes that's good, but in terms of Special Needs, it can be very bad.
You are your child’s best advocate. The only way you can effectively advocate is to be properly educated.
In fact, knowledge is power - learn all you can without overwhelming yourself. You're not going to do any good for anyone if you're stuck in the corner, weeping and afraid.
Stay organized to lower the overall family stress. Find a care notebook or file folder to keep important documents together in one place. Keep a running tally of questions for doctor's visits.
Remember that all Special Needs kids are different. He or she may not have all the symptoms and signs of a disorder.
You may grieve. You may be angry, in denial, and scared to death. That is fine. You need time to process the fact that your life is forever changed.
Take time for yourself - out of the house and away from your child. You need to recharge.
Admit when you can't handle things. There will be those days. You don't have to handle it all alone.
Ask for - and accept - help. Keep a running list of ways others can help and when help is offered, tell people specifically what you need from them. Don't expect other people to be mind-readers or deliberately oblique - people may not know HOW they can help.
Don't dismiss feelings as "just stress" as stress can cause future problems down the line.
See if your local hospital has classes to teach you how to cope with the demands of parenting a child with special needs.
Join a support group for parents in your situation - this is a way to make friends, pick up tips, and share your stories.
Don't be afraid to ask family members for financial help if necessary.
Say no to any requests that may be draining.
Identify things that may be changed and those which cannot. Remain flexible and recognize the limitations of yourself and of your child.
Set realistic goals and break larger tasks down to smaller steps.
Try to be healthy yourself - go to regular doctor appointments, eat well, and get enough sleep.
Ask the doctors office if they have any ideas for community support resources.
Check into insurance options (if you're in the US). You may feel trapped at a particular job, for fear that you will be denied new insurance. Find out any assistance your state may offer, check into the FMLA Act and the Americans With Disabilities Act - and if you qualify.
If you have other children, be present for them, too. Explain to them, as best you can, and at an age appropriate level, that although their sibling needs more of your time, you absolutely love them, too. Enlist their help with small chores. Don't leave them out of the process - remember this is stressful for them, too.
When someone hurts you by making a rude comment, tell them so. Don't let it fester; you've got enough going on without stewing about the obliviousness of random assholes.
If It's Your Friend With a Special Needs Child:
When someone you love has a special needs child, you may want to help. But how? What do you say? What do you do? How can you help your loved one with a special needs child?
Here are some tips for helping a friend or loved one with a special needs child.
Say, "congratulations" and celebrate the birth of their child just like any other child.
Send cards, balloons, baby gifts, toys - anything you'd buy for a new baby. Just because they have a special needs infant doesn't mean they don't want to celebrate their new child.
Acknowledge this child: use his or her name in conversation.
After receiving the diagnosis (whatever that may be), many parents feel disconnected from the world, themselves, and their families. Reach out to them - let them know they're NOT alone.
Offer to watch older kids so Mom and Dad can go to any appointments with the special needs child.
Allow them to feel whatever they want to feel, and give them the space they need to process everything without asking a million questions about the diagnosis.
Offer to help in concrete ways, like assisting with the household chores or pet care.
If you don't know how to help, ask your friend what he or she needs; heck, sometimes she just might need you to grab something as simple as toilet paper from the store!
Come by and visit. It's hard to get out with special needs children sometimes, and your friend is probably extremely lonely.
Avoid questions like "How are you?" and "Can I help you?" Instead, show up with a coffee and a tabloid magazine. Remember, your friend's life is upside down - a little dose of the "real world" often serves as a balm.
Know the difference between hearing and listening. You may not understand what is going on - and that's okay! Listening allows your friend to let some of their emotions out.
The world of special needs is huge, difficult to navigate, and full of paperwork. Offer some spare time to help with that paperwork.
Offer to join your friend on a trip to the doctor. An extra set of hands is great - if even for just jotting down notes!
If your friend is running around to therapies and doctors and hospitals, show up with a casserole unexpectedly. Truly, nothing says love like a hot meal.
Educate yourself on the special needs world. Learn that there are things you should and should not say.
Offer your friend a break. Even if it's just for an hour so s/he can go grocery shopping alone. Those precious moments are deeply coveted.
Offer to do an overnight stay and let them get some nighttime uninterrupted sleep. Sleeping in the day is fine, but there's nothing quite like a good 6 hour stretch in the night to make a parent refreshed.
Be there for him or her. It's very isolating to deal with a special needs child.
Continue to invite your friend and their children (including the special needs child) to age-appropriate events like family birthday parties and other celebrations. Just because a person has a special needs child doesn't mean that they can't have a little fun!
Help your friend with the special needs child celebrate every milestone. Sure, they might be different than the milestones your own child reaches, but that doesn't mean they don't deserve celebration.
Don't forget about the siblings of the special needs child. They'll need some extra TLC, too.
Offer to help with transportation to school or after-school activities.
Offer to stay with the special needs child so the parents can attend activities with their other children.
Listen, really listen, to what the other children have to say. Often kids don't tell their parents how they really feel because they're afraid of being labeled "bad" for feeling the way they do.
They may be having a hard time adjusting to a special needs sibling; they may feel resentful because they're not getting attention from their parents; they may even be getting bullied at school because of their sibling. Let the kids know they can come to you for help if they need it.
Ways NOT To Help A Friend With A Special Needs Child:
Even the most well-meaning of people can say or do the wrong thing. It's hard to know how to handle a friend or loved one who has a special needs child - that's okay.
Here are some tips for how NOT to help a friend with a special needs child.
Remember that your friendship and support really matters - it may be a lifeline for your loved one. So, if you say you're going to help, commit to it. Having someone back out when your child needs help can be more devastating than you can imagine.
Don't be pushy. If your friend is hurting, s/he may or may not want to talk it out. Time is a healer.
Prognoses are often unknown - don't ask after them unless you're truly interested in hearing the words, "I don't know," which your friend is probably dead sick of saying. Most special needs kids don't have a definitive outlook or prognosis - it's just one day at a time.
Don't bring up the latest diet/fad you heard about on talk shows, or anywhere else and suggest that your friend try it.
Don't pressure your friend into doing more - just because your friend can't go out doesn't mean she doesn't want to.
Don't judge your friend for feeling whatever he or she feels - everyone copes with a special needs diagnosis differently.
Don't use guilt. Your friend feels guilty enough as it is. Don't try to get your friend to do more by guilting him or her.
Don't compare your friend's kid to someone else with the same diagnosis.
Don't tell horror stories about the diagnosis. Your friend is scared enough WITHOUT you telling them about someone you know who died from the very same thing!
Don't expect your friend to ever be the person s/he was before the diagnosis. Having a special needs child is life-altering.
Don't be phony about the child and excessively compliment him or her.
Avoid cliches. No one likes to hear - "but this was God's Plan for you." While it might make YOU feel better to say or think this, it's not helpful to the parents of a special needs child.
Keep your heart and ears open…and remember, you've got The Band too!
Things To Avoid Saying To A Loved One With A Special Needs Child:
"Your child looks FINE!"
"Are you sure he/she is sick?"
"I heard about this new diet on Oprah for kids with XXXX condition. You should try it."
"Did you do something to cause it?"
"I don't know how you handle it all."
"This child is a blessing."
"Special parents for special children."
"God chose you for a reason."
"My friend's friend's friend's kid has this condition and he died last week."
"Don't you wish you'd aborted him/her?"
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