Holidays and Traditions
Help a child with special needs deal with having surgery.
A child's surgery can be frightening for both the child and their parents, and in the case of a child with special needs, this can even be worse.You might be concerned about what-ifs when you're new to routines and information.It's possible that your child is scared of pain, broken routine, lack of access to their favorite things, and more.When your child heals, their health will have taken a step in the right direction.This article is not a substitute for doctor's advice.Ask your doctor if you have any concerns about your child's medical procedure.
Step 1: Get as much information about the surgery as you can.
To give you some peace of mind, find out as much as you can about the surgery so that your child knows what's going on.It's best to find out as much as possible, but at least try to understand the basics, such as when and where the surgery will take place.What does the surgery do?What is it like?What is the typical recovery time?Is it normal for patients to be in pain after surgery?What is the best treatment for the pain?Will your child be admitted to the hospital?Before, during, and after the surgery, what are the procedures for you and your child?Insurance information, emergency contact numbers, etc., are some things you'll need to bring with you to the hospital.Is that correct?
Step 2: Discuss your child's medical needs with the doctor.
No two children are the same, and you need to make sure that the doctor is aware of any potential medical issues that could affect your child's surgery.If your child has no other health issues other than the one resulting in the surgery, you should tell the doctor about any past surgeries or medical treatments.If you fill out a form detailing your child's medical history, ask the doctor if there is anything else they need to know.They should mention any health issues to their doctor.The doctor will need to know if your child is prone to seizures, has any allergies, or has a medical condition.Bring up pre- and post- surgery needs, for example, if your child needs to take medication in the morning or if their diet should change after the surgery.If your child will need to go on a new medication after the surgery, you should work with the doctor to find a medication that won't conflict with their existing medication.
Step 3: Discuss accommodations for surgery.
The doctors and nurses want to make the hospital more comfortable for people with special needs, because they may struggle with the change in environment.Before and after surgery, and during a hospital stay, ask about accommodations for your child.Can your child be snoozed before getting an IV?Is it possible to remove unneeded equipment from the operating room?Is it possible for the doctors and nurses to remove lab coats before entering a child's room?Would it be possible for very few people to show up at the same time to avoid scaring your child?If your child can reliably communicate, can you not communicate with them?What kind of AAC can they use?Is there a post-operative room that does not have harsh, flickering, or buzzing lights?Is it possible to dim the lights in the room?Is it possible for the nurses to make sure you're in the room when your child wakes up?Would it be possible for you and your child to tour the hospital?Discuss comfort objects with the doctor.You could say something like, "My child is on the spectrum and needs a stuffed animal to calm him down."Can we make sure that she has her fox when she wakes up?
Step 4: The surgery should be scheduled for a good time and date.
Even if your child recovers at a normal pace, they'll still need time to rest and recover, because they can have an unusual recovery time.If you can, try to avoid scheduling the surgery on a week that is busy for either you or your child, whether it's because of their school, your work, their therapy, or any outside activities that may potentially conflict with the recovery period.There are four types of surgery - major surgery to correct issues caused by birth defects, minor surgery, elective surgery and emergency surgery.Depending on the type of surgery, you may not be able to schedule it yourself.You will need to discuss your child's surgery with their teacher and school attendance if the surgery can't wait until there is a break from school.If you can't avoid scheduling your child's surgery when everyone is busy, then you need to make sure that there is an adult available to care for them.Your child's recovery is more important than their speech therapy.
Step 5: Talk to your child about what's going to happen.
Even if your child is not paying attention to you, they can still listen and understand what you are saying, and it is important that they know what's going on.It is recommended to talk to toddlers and preschoolers early due to their limited concept of time, and to older children as soon as possible so that they have advance warning, but consider your child's memory and skills at changing their routine when it comes to talking to them about the surgery.Try using social stories, a picture schedule of what will happen at the hospital, or reading age-appropriate books with your child about surgery, and exposing them to the sort of equipment they may see while at a hospital with toy medical kits.You should be careful with the language you use.Don't say things like "The doctor will cut you open" or "You'll be put to sleep".Say things like "The doctor is going to fix your stomach so that it won't hurt any more" or "They'll help you sleep for a few hours."I'll be with you when you wake up.Portray the hospital workers as kind and helpful people, not as people who will punish your child.If your child is a thinker, try not to use a lot of language.
Step 6: Be available to your child.
Your child may be frightened of the surgery and start using harmful stims.Don't be impatient and be there for them.It's normal for a child to change their behavior when under stress, and that they need your support and care right now.Encourage your child to share their concerns with you if they are verbal or have access to complex AAC.This can help you comfort your child.Make sure they understand that they aren't getting surgery as a punishment.It's okay for them to be scared and cry.Encourage them to engage in therapeutic play, such as "playing hospital", before the surgery, to make the process more known and less scary.It will help your child get used to the hospital setting.Don't lie to your child to make them feel better.Say "Yes, but it will be over quickly" if they ask if something will hurt.
Step 7: You may need to purchase certain foods and drugs for your child.
It's often recommended to feed your child soft "safe foods" after surgery, even if the surgery wasn't oral or gastrointestinal, and they're going to need some help managing their pain.Before your child's surgery, make sure that you purchase foods and pain relief medications, pick up any prescriptions, and get any medical supplies that they may need, such as ice packs or bandages.You should check with your child's doctor to see if there are any necessities.Your doctor may recommend over-the-counter or prescription drugs for your child's pain.Check with the doctor if you want to use aspirin-based OTC medications.To help your child pick out food and drinks, go shopping with them.Clear liquids and bland foods are good for your child.Non-textured ice cream, pudding, apple or white grape juice and soft noodles are examples.It's possible that your child will be disappointed that they can't eat foods they would normally eat.They will be able to return to their normal diet once they feel better.
Step 8: While your child is relaxing, gather books, movies, and other things to do.
Find things your child can do after they need rest.A child who is hyposensitive to pain will need activities to help them rest, while a hypersensitive child will benefit from distraction.There are books and movies at your local library.If you have a big-screen TV where your child can lie down while playing games, video games may or may not be appropriate.Consider buying your child a gift that they can enjoy while relaxing, such as a new book about their special interest or a relaxing video game.This will make them happy.
Step 9: Your child should have a hospital passport.
Hospital passports are used to help accommodate children with special needs.Your child's likes, dislikes, sensory sensitivities and cravings, communication methods and strategies, ways to help them adjust, and things that your child is interested in should be written down.This can help the doctors and nurses work with your child, and give information to anyone who gets involved in the situation a bit later than anticipated.If you can make a few copies of the hospital passport, you will be able to give them to the nurses.If your child needs to be admitted, you can put one in their suitcase.You can put your child's medical history or emergency contact numbers on the hospital passport.
Step 10: Your child's bag needs to be prepared.
In the case of some surgeries, your child may need to be admitted to the hospital to make sure they don't have any problems.Pack the bag with your child and tell the hospital what you're packing.Pack them a bag with clothes and/or pajamas, shoes and slippers, small travel-sized toiletries, Stim toys, and activities that the child enjoys, such as books, stuffed animals, or movies.Check with the hospital to see if they will bring them.Don't bring electronic devices if you want to be careful.Cell phones and tablets are easy to misplace or break in some hospitals.If your child needs an electronic device to communicate, talk to the hospital staff to see if they will make an exception.Things can get lost, damaged, or accidentally thrown away in the hospital, so don't pack anything that you or your child would not want to lose.
Step 11: Discuss the surgery with the child's siblings
Your child will need to rest and recover from the surgery if they have siblings.Explain the surgery to the child's siblings as much as possible, and encourage them to ask questions.If they are left in the dark about it, they may become confused, scared, or betrayed.Siblings may feel a range of emotions about your child's surgery, and may express them in ways such as acting out, trying to get attention, not eating or sleeping as much, or withdrawing from friends.The signs that they are under stress should be addressed.Your child's siblings may be concerned about home life changing and not being looked after as much.Set aside blocks of time for you to spend with your child's siblings, and keep the care routines as normal as possible.Praise them when they do good things.
Step 12: You can get support from family and friends.
It's important for you to get support from other people because you will be stressed out by the surgery.If you can, ask for help from friends, your parents or siblings.Discuss your fears with a mental health professional.Don't let stress and fear affect you.It's normal to worry about your child during this time.You are not being silly or having unjust fears.If you have friends or family members who have had a child who has undergone surgery, ask if they can give you some advice.There's some advice that is universal, such as the type of comfort objects your child should have, or how to ease your worries during the surgery, even though techniques for neurotypical children may not work for autistic children.
Step 13: It's a good idea to make your child a meal before they go to bed.
It's best to make your child a meal that they'll eat a lot of because they won't be able to eat or drink until midnight after the surgery.They need to drink as well.Give your child a treat for dessert after you encourage them to eat as much as they want.A specialized diet is required for some surgeries.If this is the case, you won't be able to follow this step unless there's something in the restricted diet that your child enjoys.If your child has poor impulse control, hide the food and stay with them to make sure they don't try and sneak food.The surgery will have to be changed if your child eats or drinks before the surgery.Discuss with the doctor whether or not your child can take their medication on the morning of the surgery if they need to take it in the mornings.
Step 14: Allow your child to dress appropriately.
This does not mean to put their clothes on for them if they do not need that kind of help, but to help them pick out clothing that is comfortable and won't get in the way.They may have to change into a hospital gown if they choose clothing that is light, comfortable and easy to slip off.Encourage your child to wear glasses if they wear contacts.Your child should have a jacket or sweater.Hospitals can be cold.If you think your child will resist changing from their clothes to a hospital gown, be careful with a sweater - it can be difficult to get them to take them off.Encourage your child to leave their hair down if they have long hair.Buns and high ponytails can make it hard for them to rest their head on the pillow.Side ponytails or braids can help keep your child's hair out of their face and look great at the same time.
Step 15: Allow your child to have a toy.
It's not unusual for children with special needs to carry around a comfort blanket, toy, or object.Allow your child to pick out something that they can carry with them for comfort, and request that the doctors and nurses don't take it from them suddenly.It's best to take something big, rather than a small toy, as they are less likely to be lost.If the toy looks age-appropriate, focus more on your child's comfort.If it helps them keep calm, it's okay for anyone of any age to carry around a big stim toy or stuffed animal.
Step 16: Take things for yourself.
You will not be able to leave the hospital while your child is undergoing the surgery, so bring things that can keep you occupied during the waiting period.Hospitals sometimes have reading material in waiting rooms, but they should consider bringing written games.If they're allowed, electronic devices, and any charge for them.
Step 17: If your child has a health problem, alert the nurses.
When your child is being checked into the hospital for their surgery, make sure to mention any health problems that they may have, and bring up their needed accommodations to the nurses working with them.The nurses can help your child by reminding them of their needs.Don't be afraid to tell your child's story.Bring it up to the nurses so they can give your child some extra support and accommodations if they need it.If you're bringing up your child's condition, say "autistic", instead of "Asperger" or "PDD-NOS".It's possible that the nurses aren't familiar with other diagnoses.To avoid panicking, ask the nurses to not restrain your child.
Step 18: There is a chance that your child will temporarily regression.
It's possible that your child may lose some of their abilities because of the stress.Keep an eye out for things your child is struggling with, and be extra patient with them.If you suspect your child may lose their verbal ability, bring a form of AAC that they can use.If your child gets stressed out by broken routines, sensory input, or even not having eaten for several hours, it may be overwhelming.Do everything you can to help your child.
Step 19: You can comfort your child during the waiting process.
It is possible that you and your child will need to wait during the pre-surgery preparations.Stay with your child and keep them company, even if that means not saying anything as they play with a stim toy or as you talk with them until the doctor arrives.You'll be there when they wake up if you remind them that.If your child is in pain, try to distract them.They can be distracted with a TV show on the hospital TV, offered a hug or rubbed their back or hand.Help them stop using agitated and harmful stims.
Step 20: If your child is getting an IV, you should keep them away from it.
It can be difficult to get a child to cooperate with you when needles are involved.Offer a stuffed animal, a stim toy or encourage them to infodump while the IV is in to distract them from the process.Talk to your child about a happy event if you know they enjoy it.If your child is receiving anesthesia through a mask, they may attempt to remove it.Don't restrain your child, but talk to them and try to hold their hands.Don't pin your child down, restraining them will result in them becoming fearful or panicked and fighting you, and these practices have been proven to not be beneficial.All children on the spectrum are different.Hypersensitive children may try to jerk away from the IV in fear, while hyposensitive kids may not even feel it.
Step 21: You should stay with your child as long as you can.
Parents are often encouraged to stay with their children before the surgery even if they don't like it, as they find comfort in having a familiar person nearby.It's recommended to calm your child by talking to them, but just being in the room with them can be a big help.If your child is still awake, you will not be allowed in the operating room.When they wake up, tell them that you'll be there.
Step 22: Prepare for the wake-up time after surgery.
When your child wakes up after surgery, they will be confused.Make sure they know you're there by softly talking to them.It can take some time for your child to wake up, so be patient.Don't wake your child before they're ready.They need rest, not only to heal faster, but also to allow pain medications to kick in.Some parents say their child is trying to pull the IV out of their arm.While the nurses are trained to deal with children doing this sort of thing, you may want to stay near your child during the wake-up process.
Step 23: The instructions for your child's post-operative care should be written.
You won't be able to remember what happened when your child comes home because they're going to need different care.You can either get this information during or after your child's surgery, but make sure you get a written form for post-operative care so that you don't get confused.Print-outs from the doctor can be useful.Take notes on how to treat your child's wound, what activity they can and cannot engage in, who to call if there is an issue, and what symptoms are and aren't.If you need to call the doctor about your child's treatment, write down their phone number.
Step 24: Hospital admittance is taken into account.
Many surgeries no longer require your child to stay for an extended period of time at the hospital to recover; however, some do, or there may be potential health problems that result in the need for a longer stay.It's possible that this will distress you and your child, especially if an unexpected event has resulted in the need for admittance, but keep it in perspective.The hospital workers are trying to help your child get better, not take them away from you.You can stay with your child in the hospital.Make sure they have comfort objects, enjoyable activities, and things that remind them of home if that isn't the case.If you need to leave the hospital while your child is there, tell them where you are and when you should return.If you need to be gone for a long period of time, have another family member stay with you.If your child needs to be in the inpatient ward for more than a day, you should create a schedule for them so that they have a routine.
Step 25: When your child arrives home, encourage them to rest.
Even if your child is still tired from the anesthesia, it's important to make sure they rest to help the healing process.For the first few days, encourage them to rest as much as possible and to only get up to use the bathroom.Roll your child onto their side to sleep.If children are on their side, they are less likely to choke if they vomit in their sleep.If your child feels capable of performing normally, make sure they rest.Hyposensitive children may try to go about their lives as normal, which can potentially hurt them or slow their healing.It is common for children to sleep more than usual for a few days after surgery.Constipation, gas, urinary retention, nausea, sore throats, and dizziness are all common.The symptoms should go away within a few days.
Step 26: There is a form of AAC that you can offer.
If your child is stressed out and unable to communicate, or if their surgery affected their mouth or throat, they may not be able to speak.A simpler form of AAC may be needed for some children who can use one form.Since your child will need to be able to communicate with you during recovery, pick out a form of AAC that works best for them.A child can try ringing a bell or pressing a button to call.The Picture Exchange Communication System (PECS) is a system for exchanging pictures.They can be useful for requests, but can't be used for conversation.Communication boards can be used to express emotions, but not for conversation.It can be difficult for a child to use them if their motor skills have been affected by surgery.School-age children who have developed enough fine motor skills to use complex AAC apps can use them.
Step 27: Clear liquids for your child.
It's not a good idea to give your child solid foods early on in the recovery process.Make sure they have clear liquids that are easy to access, such as water, apple juice, ginger ale, or Popsicles, so that they stay hydrated.It may be a good idea to keep a sealed cup by your child's bed, so that you don't accidentally knock it over.If your child isn't vomiting, you can give them a light meal, such as soup or crackers.Your child needs to be able to tolerate the food's texture or flavor.
Step 28: If your child needs someone to watch or help them, stay close to them.
Even if your child is fairly independent, they won't be able to do most things on their own.They may need to be checked on periodically.Make sure that your child is being cared for and checked on often enough, and that you are nearby so that they can call for you or otherwise get your attention.If you need to leave the room for a short period of time, you can give the child an object such as a bell or another person to watch over them.Older children can text you.Contribute to caregivers.Your spouse might be able to watch over your child while you run out to the store or pharmacy, and your children's siblings could be playing board games with you.If your child feels the urge to stim, bring their box of toys.
Step 29: Follow your doctor's instructions for care after surgery.
Your child may need to take medication, have a hot or cold compress applied to the surgical site, or have bandages changed.Follow the instructions to help your child heal.To help the child understand what's going on, talk with them while they help with the procedures.I'm going to put an ice pack on you.It's going to be cold, but it will help you heal quicker.Even if your child struggles, don't restrain them.It will cause your child to fear these times.Make it manageable for them by working with them.If your child won't cooperate no matter what you do, contact their doctor and ask if there's an alternative way to treat them.
Step 30: According to the doctor's orders, administer the medication.
Determine who is in charge of the child's medicine, and make sure that everything is done according to the schedule.If your child is older and more responsible, someone should be with them when they take their medicine to make sure they are doing it correctly.The child should not be expected to keep track of their own medicine.The exhaustion of surgery may make an otherwise responsible child unable to reliably take medicine according to the doctor's orders.Try to keep a list of what has been taken.
Step 31: Encourage your child to stay out of the operating room.
If your child is curious, they may want to visit the surgery site.Make sure that your child understands that they shouldn't touch the stitches or the area around it.They need to not scratch if it breaks the stitches.Encourage them to learn about surgery by showing them books and websites.If they have a reason for touching the surgical site, give them something else to distract them.If you suspect that your child will pick at the stitches and pull them out, you should put soft pads or bandages over them.If the surgery was in an area that was frequently touched on a regular basis, be cautious.Their hand or mouth.Help your child with tasks that involve this area so that they don't hurt themselves or reopen the wound.Pick pajamas and clothes for your child that are less likely to rub against the surgery area and cause pain.
Step 32: You can give your child low-energy activities.
If your child's surgery requires an extended period of resting, it may be easy for them to get bored or want a distraction from the pain.Offer them activities that don't require a lot of energy, such as: watching a movie or reading a book.Don't allow them to engage in activities that may hurt your child.
Step 33: The child should be comfortable.
It's important to spend time with a child with special needs so they don't get stressed out by surgery.It can be helpful to have a loved one by your side if your child is struggling.Please read to them.If they are willing to have conversations, then so be it.You can sit next to them while you use your phone or read.If your child likes cuddles, offer them.
Step 34: Help your child deal with pain.
Hypersensitive children may struggle with pain management after surgery.If distraction isn't enough, then you may need to administer pain medication.If your child is capable of taking pain medication in pill or liquid form, you should follow the instructions on the prescription or the post-surgery care instructions.If your child is still in pain after taking the medication, contact the doctor.If a child is hyposensitive or non-verbal, it can be difficult to recognize pain.If your child seems extremely subdued or shows less interest in their activities than normal, they may be unable to use a part of their body.They may be in pain after having their leg operated on.If your child has a health problem such as a heart problem, blood clot, or asthma, don't give them aspirin or other NSAIDs unless their doctor says it's okay.You should check on your child's pain occasionally.A plain 1-10 scale is often used to describe pain, but it can be difficult to write down what the numbers mean, for example, "I hurt so much that I can't focus on anything else."It's best to give your child pain medication when the pain isn't very intense, since it can take longer for the medicine to work.
Step 35: Pick up your child's homework if you can, or get a friend or sibling to do it.
If your child's school isn't on break, they'll need to get the classwork and homework assignments that are being assigned.You can either pick up your child's homework or a friend or sibling can drop it off at the school.It's a good idea to not let it pile up until your child returns to school, since it can be a lot of work to get a large stack of papers on a single day.Encourage your child to rest.Recovery is more important than schoolwork for a child after surgery.It's a good idea to prevent your child from doing heavy lifting after surgery.The internet can be used to your advantage.Homework assignments, lessons, and the daily schedule can be offered online by some teachers.The assignments may be sent over email.Depending on how long they are out of school, ask if they can record the day's lesson to review later.
Step 36: Your child's siblings should also be involved in the recovery process.
Since your time has to be divided between your children, if your child has siblings, they may get bored or frustrated more easily.If you want to avoid your other children getting agitated or being unkind to your child, involve them and have them help out.Encourage them to play with and talk with your child to help them feel less lonely.Older siblings may be able to help out with some mild care tasks, while younger siblings can help by playing games.If your child needs something, you can choose between the two age ranges.Set up a block of time for your child's siblings to spend with them and don't overload them with sibling time.Half an hour every few hours is needed so that your child doesn't feel lonely and that their siblings are more involved.Be prepared to shorten the time.Younger siblings can be a source of frustration for your child if they pester them about the surgery and why they can't do what they normally do.Make sure your younger children understand that they should talk to you about the more technical aspects of the surgery and recovery, and leave the personal questions.What was the hospital like?To your child.
Step 37: As your child recuperates, start serving food that is easily digestible.
It's okay for your child to take some time before they feel ready for more.To adjust your child to eating more solid foods, serve the soft foods you bought to them.Make sure your child gets enough fluid intake if they don't feel ready to eat.Don't give them food that has to be chewed heavily or that is very spicy because it could interact with the surgical area and cause a blood clot.When not under stress, your child may reject foods that don't align with their sensory preferences, or refuse to eat things that they may eat.It's normal for children with special needs to refuse certain foods under stress, and eating enough is more important than eating well.
Step 38: There are signs of illness after surgery.
It's normal for your child to be confused after the surgery.Hypersensitive children may experience a lot of pain.If your child isn't showing any signs of improvement after surgery, you should speak with the doctor as soon as possible as it may be a serious problem.If you notice that your child has any of the following symptoms, contact the doctor immediately.
Step 39: Encourage your child to return to activities slowly.
As your child recovers from surgery, they will begin to feel more capable of taking on certain tasks, like working on their schoolwork or getting back into sports or clubs.Since their body isn't finished healing, they need to rest.If your child feels like they don't need to go slowly, encourage them to do their activities slowly and cautiously.It's a good idea to give your child time to work on their homework.Give them a low-energy activity to do, like watching their favorite movie, when the time is up.Even if they don't need them, make sure they take breaks from their daily activities.Your child's health can be at risk if you return to normal activities before the healing process is over.
Step 40: Be patient with your child
The recovery process can be frustrating, upsetting, or painful for a child, and your child may be upset while they're recovering.It's possible that you're frustrated because your child is angry or because the recovery process is tiring.Remember, though, that your child can't magically make themselves get better and that taking out your frustration on them will upset them and make them feel guilty or like they're burdening you.If you can, be patient with your child during the recovery process, without snapping at them or doing actions that would upset them.Get support from family and friends.It's not a good idea to tell your child that you're frustrated or upset because you don't need to feel guilty.You don't have to upset your child by talking to others.It's okay for your child to be upset or annoyed at the recovery process if you remind them that they will get better.Many people say things they don't mean when they're angry or upset.Even if it's not on the schedule that most people would expect, your child will recover, and they won't be in pain forever.Don't worry!
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