Children with Special Health Care Needs FAQs

Q: What car seat is best for my baby born prematurely?

A: A car seat that meets federal safety standards and fits your small baby is best. Your infant should fit in the weight and height requirements of the car safety seat. Choosing a seat that has a smaller harness and many harness slots may fit your baby better as many manufacturers also have inserts for smaller sized newborns that come with the car safety seat.  The distance from the lowest set of harness slots to the bottom of the child safety seat should be short enough so that the harness is at or below the baby’s shoulders. The distance from the crotch strap to the back of the seat should be short enough so that the baby’s bottom is held back against the child safety seat and does not slide forward.

The harness should be positioned at or below your baby’s shoulders and the chest clip positioned at armpit level.  You know the harness is tight enough if your fingers slide off the harness when you pinch the webbing at your child’s shoulder.

Q: My baby’s head and body lean to the side when in her car seat. What can I do to make her fit better?

A: Many car seats come with built-in head supports or inserts for smaller babies that have been crash tested for use with the seat.

If your baby needs more support for her head or trunk you can use a rolled blanket or towel along the side of your child’s body if allowed by the car safety seat manufacturer. You can also place a rolled washcloth or diaper between the crotch strap and your baby’s diaper to help keep her bottom against the back of the seat and prevent slouching forward.

Never use a head support insert or padding that does not come with your car seat. There are no federal safety standards for these products.

Q: I was told that my baby needs to be observed in a car seat before we can leave the hospital. What does this mean?

A: Some infants born prematurely experience breathing problems when they are sitting semi-reclined in a child safety seat. The American Academy of Pediatrics recommends that infants born prematurely or with some other medical conditions be observed through a car seat tolerance screening for breathing related problems before they are discharged from the hospital nursery.  Ask your baby’s doctor or nurse if your baby needs to a car seat tolerance screening in her car safety seat before hospital discharge.

Q: How should my baby travel if she has breathing related problems?

A: If your baby has problems with breathing, heart rate, or oxygen levels when sitting in a car safety seat, she may have to travel flat in a car bed that meets federal safety standards. A car bed allows your baby to lie down when she travels. Check with your baby’s doctor or nurse about which car bed is best for your infant and where you can get one.

Q: If my baby has to travel in a car bed, when is it safe for me to move my baby to a rear-facing car seat?

A: If your baby is using a car bed, your physician may consider scheduling a car seat tolerance screening in her rear-facing car seat to measure heart rate, breathing, and oxygen levels, within several weeks after discharge. This car seat tolerance screening might be done at home (oxypneumocardiagram), at the hospital (a polysomnogram), or as an outpatient by direct monitoring of the heart rate, breathing, and oxygen levels when in the car safety seat.

Q:Where should I put medical equipment in the car?

A: Place medical equipment such as apnea monitors and oxygen tanks on the floor of the vehicle wedged with pillows, foam or blankets. Equipment can also be secured with unused seat belts. There are no straps or belts specifically made for securing equipment in a vehicle. Some vehicles do not allow putting objects under the front passenger seat as they may interfere with advanced airbag sensors. Check the vehicle owner’s manual.

Other considerations when traveling with your infant born prematurely or low weight baby:

• Minimize travel
• Travel with an adult in the back seat to observe the baby
• Never place the car seat in front of an airbag
• Only use your car seat for travel
• Never leave your child unattended in a car seat in or out of the car

Q: What if my child has autism and gets out of her car safety seat, booster, or seat belt?

A: Bullet points below can assist:

• Pull your car off the road where it is safe and re-fasten her car safety seat or seat belt.  If possible it may help to have someone sit next to her in the back seat.
• Make sure the car safety seat fits your child correctly.  Harness straps that are loose or through the wrong set of slots could make it easier to get out of the seat. The harness should fit snugly and without any slack.  Forward-facing, the harness should be through the slots at or above your child’s shoulders (Figure 1).  Read the car safety seat instructions to make sure you are using the harness the right way for your child.
• If your child opens the car safety seat’s chest clip, you may need to try other car safety seats that have different types of clips (Figure 2 and 3).
• If your child gets out of her booster seat or seat belt, try a car safety seat that can still be used with a harness.  A harness will hold your child better than a booster seat or seat belt.  A car seat with a harness is harder to escape than a booster seat or a seat belt.  Visit the website www.healthychildren.org for a list of forward-facing seats that have a harness to higher weights.
• Other types of restraints, such as large medical seats or vests (Figure 4), might work better for your child. Some will need to be ordered with the help of a healthcare professional.  Talk with your child’s medical team or call 1-800-755-0912 to learn more about these options.

Q: My child consistently escapes her child restraint. What can I do?

A: If your child consistently resists the use of a child restraint you may consider a special needs seat that offers features that may help prevent your child from undoing the chest clip or unbuckling the buckle on the car seat. Call the National Center for the Safe Transportation of Children with Special Health Care Needs at 1-800-755-0912 for details about specialized seats.

Using an EZ-On Vest with a vehicle floor mount tether may help keep your child restrained in the car.  This restraint can be used with a vehicle bucket or bench seat.  You have to get special hardware placed in your vehicle but you don’t have to use the seat belt.  Contact EZ-On at www.ezonpro.com to see if the floor mount tether will work in your vehicle.

The Merritt Roosevelt, Inspired by Drive Spirit/Spirit Plus, Inspired by Drive IPS car seat, Convaid Carrot 3 Child Restraint, and Merritt Churchill with positioning harness also have anti-escape options.  The recommended restraint will be dependent on how your child is escaping.

Although, there are buckle covers made to keep children from unbuckling their seat belt, they are not recommended as they are after-market products – because it is unknown how the device would interact with the seat belt buckle in a crash.

Q: My child likes stories. Do you have a story about car safety seats?

A: Ask your child’s speech therapist to write a special story for your child. The following story is an example:

RIDING IN THE CAR
When we go places, we ride in the car.  When we get in the car, we always have to keep our car seat buckled.  Keeping the car seat buckled makes us safe.  When I keep my car seat buckled, I will get to play with my favorite toys.  Maybe I will even get to pick the toy(s) that I want!  Making good choices makes my mom and dad happy.  When my mom and dad are happy, this makes me happy.   Unbuckling my car seat or trying to get out of my car seat is not good.  When I do something that is not good, my mom and dad are sad.  When my mom and dad are sad, this makes me sad.  It is better to be good in the car so that I get to do fun things.  I need to remember to keep my car seat buckled every time I ride in the car.

Q: Would a behavior plan help keep my child from getting out of her car safety seat or seat belt?

A: Yes. Consistent use of a behavior plan may help prevent your child from escaping her car seat.  Ask your behavioral psychologist, therapist , or pediatrician to help you make a behavior plan you can follow every ride.

Q: What should be in a behavior plan?

A: Teach your child what you expect when riding in the car and tell your child what the rules are when in the car.

Praise and reward your child

Praise your child for good behaviors and offer rewards your child likes. Give your child a reward such as a sticker for staying buckled up. At first, you may need to give your child more rewards, more often. For example, give her a sticker every time you come to a stoplight or every minute she follows the plan. Gradually increase the amount of time between rewards until she receives one reward for a full trip.

Let her choose the reward she will earn by following the plan. You may need to use a choice board with things that your child likes. Consider a special toy that she can only have in the car, such as a soft book, soft toy, or listen to music. (Hard toys could hurt your child in a crash). As your child becomes too used to the toys, replace them with different ones.

Be consistent

Make sure everyone who travels with your child uses the same behavior plan every time the child rides in the car.  Follow the plan every trip.

Set Boundaries/Discipline 

Set limits for behaviors that are okay and not okay when riding in the car and stick to them. Praise and reward good behaviors immediately. Ignore behaviors that are not dangerous.

Q: My child is bothered by light touch and complains when in her child restraint. What should I do?

A: Make sure the harness, vest or seat belt is snug, flat and not twisted against the child’s body. Also, make sure the harness is touching your child’s clothes and not her skin. Tight fitting underclothes or a compression vest may help prevent irritating light touch.

Q: What if my child moves a lot in the car during travel?

A: Make sure your child has a chance to move around throughout the day or before getting into the car. Running, jumping, and hopping are movements your child could do before riding in the car. If possible, stop during your trip and let your child move. Some children like to wear a compression vest which may calming and help to decrease movement during travel.

Q: What if my child screams when she hears loud noises such as sirens?

A: Teach your child to cover her ears or wear headphones to block out loud sounds. Explain to your child the reason for loud sounds to help him understand.

Q: What if my child chews on the harness?

A: Lightweight chew toys may help stop chewing on clothes, harnesses, or car safety seat covers. You can purchase chew toys at: www.abilitations.com

Q: How long should I keep my child with cerebral palsy rear-facing?

A: The American Academy of Pediatrics recommends you keep your child rear-facing until age 2 or until they reach the maximum height and weight for the car safety seat they are using. Children with cerebral palsy may have poor muscle control and riding rear-facing helps support your child’s entire body and protects her better from injury, especially to the spine.  Most new rear-facing only, convertible or all-in-1 car safety seats allow children to ride rear-facing up to 40 or 50 pounds.

Q: What car safety seat should I use when I turn my child with cerebral palsy around?

A: Use a forward-facing car safety seat that has a 5-point harness until your child outgrows the maximum height or weight allowed by the manufacturer.  Many forward-facing car safety seats allow children to remain in a harness system up to 65 pounds.

A car safety seat that can be tilted back in the forward-facing position will help keep your child’s head and back against the seat. You must check the manufacturer’s instructions to determine if your car safety seat can be tilted back in the forward-facing position.

Convertible and 3-in-1 car safety seats can be changed from rear-facing to forward-facing seats.  AN all-in-1 car safety seat or a combination car safety seat can be changed to a belt-positioning booster seat when your child is too big for the harness.

Q: What if my child has trouble sitting up or cannot hold up her head?

A: If possible, keep your child rear-facing. Riding rear-facing helps keeps your child’s head and back against the car safety seat.

Your older child may need a forward-facing car safety seat that can be tilted back in the forward-facing position or a large medical car safety seat. Large medical seats have special padding for the head and trunk and may tilt back in the forward-facing position.

You can place rolled blankets or towels along the side of your child’s head or trunk to prevent your child from falling side to side. Never put anything behind your child. If your child needs more support for her neck, a soft cervical neck collar can be used to help prevent her head from falling forward. A hard collar should be removed during travel.

Never recline the vehicle seat more than allowed by the vehicle manufacturer.

Q: What if my child has casts because of surgery or botox?

A: Your child will need a car safety seat that has enough room to fit the cast. Your child might be able to use his own car seat but make sure to try it before you leave the hospital. If the cast prevents your child from sitting, your child may need a special car bed or child restraint. Ask your child’s nurse if there is a special needs car seat program in your area that can help find the right child restraint or car bed for your child.

Q: What if my child has pain or pressure areas on her skin when she rides in a car safety seat?

A: Contact your doctor or rehabilitation therapist to help you determine what is causing the pressure or pain. Your child may need a different car safety seat that fits better, need to be repositioned in her car safety seat, or need a seat that offers more padding. Only use padding that comes with your car safety seat. Do not add extra padding behind your child’s back and bottom. Your child’s car safety seat might not work as well in a crash.

Q: When can my child ride in a booster seat?

A: Your child may be able to use a booster seat if he can hold up his head and sit without any help. Use a booster seat after your child has outgrown a car safety seat with a harness. This is usually when a child weighs about 40 pounds and is about 4 years old. The booster seat helps lift a child up so the adult seat belt fits properly.

Never use a booster seat with a lap belt only. Booster seats must be used with lap and shoulder belts. Consult an occupational therapist or physical therapist if your child does not have good control of his muscles and has outgrown his car safety seat.

Q: When can my child use a seat belt?

A: Your child must be able to hold her head up and sit without any help in order to use a seat belt. She must also be able to sit all the way back against the vehicle seat without slouching, bend her knees easily over the edge of the seat, and wear the lap/shoulder seat belt flat and snug on her upper thighs and between her neck and shoulder. This is usually when a child is about 8-12 years old and is at least 4’9” tall (57 inches).

Q: What if my child uses a wheelchair?

A: If your child is transported in her wheelchair on the bus or the family vehicle you can find a detailed brochure at University of Michigan’s Wheelchair Transit Safety website describing how to use a wheelchair as a transportation device.  The wheelchair will need appropriate tie downs within the vehicle and the child will need the vehicle seat belt for protection in a crash situation.  Almost all harnesses and lap belts in wheelchairs are not crash tested – they are only to help maintain a good position when seated in the wheelchair.  The vehicle seat belt is is required to protect a rider in a in a vehicle crash.  The appropriate wheelchair tie downs will keep the wheelchair from moving within the vehicle and are separate from the vehicle seat belt.

Q: If my child has a cast, will she fit in her car seat?

A: Hopefully Yes.  However, that depends on the type of cast and whether your child can sit up.

If your child has a cast AND CAN sit up: Your child’s own car safety seat will probably work unless the cast is too wide to fit inside the car seat . Bring your car safety seat to the hospital after surgery to see if it will work. A car safety seat with low sides may work. Use a car seat with a five-point harness.  Make sure to support your child’s legs with pillows, foam, or blankets if needed.

If your child has a cast AND CANNOT sit up: Your child may need a special restraint such as the Hope car bed, convertible Quokka or Wallenberg, forward-facing Spirit Spica or Wallaroo, or the Lay Down/ Modified EZ-ON vest. Approved car beds can accommodate infants who must lie down in the car. The Wallenberg is a car seat made specifically for kids in casts, and the Quokka, Spirit Spica, and Wallaroo all have spica kits/accessories. The Lay Down/Modified EZ-ON vest is for children over two years old and over 22 pounds who need to travel lying down. In some cases, a child safety seat with lower sides and shallow seat depth may fit your child.

NEVER transport your child with a cast on a vehicle seat reclined more than allowed by the vehicle manufacturer. The vehicle seat belts will not hold your child’s body properly, and she could slide out from under the seat belt system. Your child may need to be transported by an ambulance if she doesn’t fit in an approved car safety seat, car bed, spica specific adaptive car seat, or Lay Down/Modified EZ-ON vest.

Q:Where should I put medical equipment in the car?

A: Place medical equipment such as apnea monitors and oxygen tanks on the floor of the vehicle wedged with pillows, foam or blankets. Equipment can also be secured with unused seat belts. There are no straps or belts specifically made for securing equipment in a vehicle. Some vehicles do not allow putting objects under the front passenger seat as they may interfere with advanced airbag sensors. Check the vehicle owner’s manual.

Q: When can my child ride in the front seat?

A: The back seat is the safest place for all children 12 years and under, even if your car does not have an airbag.

Q: How should my child ride in a school bus?

A: Preschool-age children who weigh less than 40 pounds should use a car safety seat on a school bus. Talk with the school about your child’s transportation needs. Make sure they are included in her IEP (Individual Education Plan). She may need to ride in a large medical seat or a wheelchair if she has trouble walking.

Q: How can I be sure my child is buckled up correctly?

A: Always read and follow the directions that come with your car safety seat and your vehicle owner’s manual. You can find a certified child passenger safety technician who is trained in special needs transportation at cert.safekids.org.  Click on “Find a Tech”. In the Search box, make sure to click “Special Needs” in the Extra Training field. If there is not someone trained in special needs transportation in your area, please call 1-800-755-0912 for further assistance.