Special Needs Therapy and Resources

The Individuals with Disabilities Education Act (IDEA) requires a state or local government agency complete an Individualized Family Service Plan (IFSP for every child eligible for Early Intervention services from birth through age 3. The IFSP includes your child's strengths and needs, your family's resources and concerns, and the services the state will provide. Whatever services your child receives must be outlined in the IFSP, which should be reviewed every six months. Early Intervention often includes speech, physical and occupational therapy, as well as psychological counseling. Early Intervention must also include family services such as:

• Helping parents learn how to manage their child's disability
• Helping siblings learn to cope with their new baby brother or sister

If your child has a qualifying special need, she will receive Early Intervention services from birth to age 3. Afterwards, your child can then receive Special Education services from your local school district from age 3 to age 22. The district is supposed to provide this "free and appropriate public education" in the "least restrictive environment possible." Based on various forms of testing and assessment, you will create an annual Individualized Education Plan (IEP). You, as parents, will have help creating the IEP from the school's special education teacher, another academic teacher, a school administrator, a school psychologist and perhaps a school counselor or nurse.

An occupational therapist can help your family adapt your home environment to meet the needs of your child by:

• Recommending minor changes such as avoiding fluorescent lights, which irritate some children, or lowering noise levels in certain rooms.
• Purchasing equipment that will calm your child, such as a swing, trampoline, big balls, or other things.
• Teaching you how to massage or apply deep pressure to calm your child.
• Facilitating your child's use of computers and pencils by finding a mouse with the best shape or a pencil with a certain grip.
• Helping your child develop fine motor skills.
• Designing both an environment and a daily sequence of activities that would best foster your child's ability to learn.
• Assessing which kind of employment would be best when your child turns 22, and then visiting the workplace to make any helpful adaptations.
• Helping your child to enhance her work skills.

Researchers have reported many auditory processing problems in kids with FXS. Issues with attention, memory, word retrieval, and auditory sequencing often affect comprehension and production of speech and language. And speech production of people with FXS may be characterized by imprecise articulation, a fast rate of speech, unusual voice characteristics, and cluttering, all of which affect intelligibility. Speech therapists can help work on all of these factors.

Children with sensory integration disorder often benefit from occupational therapy. Finding the right balance of some (but not too much) stimulation is an ongoing issue and the occupational therapists help with:

• Arousal levels
• Tactile defensiveness (characterized by high sensitivity to touch sensations)
• Being overwhelmed and fearful of ordinary daily experiences and activities
• Fine and oral motor weaknesses
• Designing environments where parents, caregivers, and teachers can plan out the most helpful combination and timing of various sensory stimuli for each child's individual needs

One mother reported that her child had benefited from:

• Physical therapy, which helped the baby learn to roll over, sit up, and talk
• Occupational therapy, which helped with feeding, social skills, hand-eye coordination, and speech
• Speech therapy, which helped with feeding, social skills, hand-eye coordination, and speech
• Hippotherapy (horseback riding), which helped with balance
• Educational therapy (tutoring), which helped with cognitive development.

Early Intervention programs helped her child develop motor, language, and social skills. When the child was very young, weekly physical therapy helped build up muscle tone and coordination. Later on, speech and occupational therapy (which helped with issues such as language skills, hand-eye coordination, and social skills) were beneficial.

Gradually, this family replaced physical therapy (which their child disliked) with dance class, which helped integrate her into the community. She began with ballet, jazz, and tap, and ultimately had to drop the tap because it was too difficult to move quickly enough. But she continues to enjoy ballet. This child also played T-ball and soccer with other kids when she was young, but stopped when it became too competitive. This family gave up speech therapy when they found that their daughter learned more from interacting with other children in a regular preschool than she learned from her speech therapist. The natural interaction taught her a great deal.

An occupational therapist can teach your child the social and vocational skills needed in a workplace and also identify which kind of work would be most appropriate for your child.

• Arrange for counseling to teach your child accident prevention skills as well as information about nutrition, alcohol, contraception, obesity, etc.
• Enroll your child in a support group for others in her situation. This will offer both structure and support.
• Make sure your child goes to a physician who is sensitive to medical and communication issues people with Down syndrome have. This doctor should also be able to recognize and treat problems your child is at increased risk for but may not be able to verbalize.

 

Physical therapists can help with comfort level, by working to strengthen muscle tone, and with overall improvement in independent movement. Here are some examples: 

• For stiff and tight muscles, working and stretching the muscles should increase comfort.
• Weak muscles can be strengthened, and depending on your child's specific characteristics, a physical therapist might work with your child to gradually enable:
• Walking
• Use of a wheelchair
• Standing
• Climbing stairs
• Use of a walker or braces
• Kicking or throwing a ball
• Riding a bike
• Identification of appropriate exercises

My doctor recommended splints and casts for my child. Is that an old-fashioned approach, or is it still widely used?
Splints and casts are widely used to stretch or achieve the most helpful positioning of a joint and thereby facilitate movement. Orthodics -- devices to enhance foot movement and comfort -- may also be used. Other treatments include medications which help control muscle spasms.

Some people have recommended Botox therapy for my child. Isn't it used for cosmetic treatment?|
In addition to being used cosmetically, Botox has been found to be very helpful for children with cerebral palsy. It can reduce their spasticity, relax muscles and increase range of motion.

I have heard that some children with cerebral palsy respond well to aqua therapy. Is that true?
Yes, being in the water allows many children to move more easily than they can at other times, as it reduces pressure on bones and joints. This then enables the children to strengthen muscles in the water by doing exercises there. It also can be a place where parent and child can have fun together, with water play. In addition, children with cerebral palsy can work on aerobic exercises in the water, improving their overall muscle tone and cardiac health. The water can enable increased coordination and endurance and reduce stress.

What are the advantages of horseback riding therapy (hippotherapy) for kids with cerebral palsy?
This therapy has many advantages. It offers children a way to have fun while also improving muscle function, balance, posture and movement, and lowering blood pressure. The horse's stride is similar to a human stride and so accustoms children to that gait. Most children sit with a therapist behind them on the horse, holding them in the correct position. Those that are able to hold themselves up adequately have the therapist walk alongside the horse. Therapy sessions last approximately 30 minutes.  The therapy gets kids out of the house and experiencing new situations, sights and feelings, and is therefore stimulating.

For information on treating autism and Asperger syndrome please visit our Autism Treatment and Therapy section of the Care.com Caregiver Guide to Special Needs.

Here are some suggestions offered by the Mayo Clinic:

Substitute any of the following for one cup of wheat flour:

• 1 cup plain cornmeal, fine
• 3/4 cup plain cornmeal, coarse
• 3/4 cup rice flour
• 5/8 cup potato flour

It may be helpful to bake longer and at a lower temperature when using these substitutions. You will have to experiment with combining different ingredients at different temperatures to find what works best for your family in your oven.

Substitute any of the following for 1 tablespoon of wheat flour:

• 1 1/2 teaspoons cornstarch
• 1 1/2 teaspoons arrowroot starch
• 2 teaspoons quick-cooking tapioca
• 1 1/2 teaspoons potato starch
• 1 1/2 teaspoons rice flour

My child feels she is the only one in the world who is so limited in what she can eat. How can I find others in her situation for her to talk to?
Many people with celiac disease find support groups very helpful. In these groups people:

• Offer the perspective of others in the same situation
• Share tips on how to deal with a difficult situation
• Give advice on how to adapt recipes to make them taste better

For approximately 80 percent of those with epilepsy, drugs or other interventions effectively control the condition, as long as they are taken as directed. For the other 20 percent, however, seizures may be ongoing, significantly interfering with life.

Here are some suggestions to keep children safe:

• Install a monitor in your child's bedroom so that you can hear when a seizure occurs.
• Make sure your child sleeps in either a regular bed or a mattress on the floor, as opposed to a top bunk, in case a seizure occurs when your child is in bed.
• For children who have frequent and severe seizures in which they fall down, a helmet that fits well and has a face guard can protect against head and facial injuries.
• Avoid situations in which there will be flashing or strobe lights -- which can occur in movies, videos, on TV and in dance clubs -- as they can induce seizures.
• Make sure your child wears a life vest whenever he or she is near water, including a backyard pool.
• Closely monitor showers and baths to prevent serious injuries from seizures and make sure drains are not clogged o prevent drowning.
• Take extra precautions when your child is around traffic (crossing streets) and in elevated locations. It is safest to have someone who is capable of intervening accompany your child in those situations.
• Create an easy-to-follow list of what to do in case of a seizure and put it on the refrigerator or other accessible location. Go over this list with all babysitters and be sure to include contact information for you, another responsible adult, the doctor, and 911. Send a copy of this list along with your child to any friends' homes, and talk with adults in charge about what to expect and do if your child has a seizure.
• Try to find a middle ground between safety and overprotection. You may have to continually adjust your precautions based on your child's health and age.

My child resists taking his medication. What can I do about it?

Some children strongly dislike taking any medication. Plus, some kids feel that if they don't take the medication, then that means they don't have a problem -- a form of denial.

• Try reasoning with your child. Most kids are very motivated to not have seizures or preventable incidents at school. Taking the medication is a way to prevent that.
• Try to incorporate your child's medication into normal family routines so it becomes an accepted part of the day.

Once my child developed epilepsy she went from being a straight-A student in honors classes to a B-student in standard classes and now feels she is "dumb." Is there anything I can do about this?

Unfortunately, some of the seizure medications interfere with brain activity and leave children slow at processing information. Remind your child that she is smart but that the medication has side effects. Speak to the doctor to see if another medication might minimize mental side effects. For children struggling with acceptance, support groups (both in person and online) can be helpful ways to cope.

My daughter's medication led to a weight gain of 30 pounds, exacerbating her low self-esteem. How can I help?

Any child would be upset by a significant physical change. Speak to your child's physician about the consequences of this medication and see if it is possible to substitute another one. Make sure your doctor is taking your child's feelings seriously.

Care.com is a website that lists caregivers throughout the United States who provide assistance to people with special needs. You can search for caregivers near you and review caregiver profiles including photos, references and background checks, and work history. For specific listings of special needs caregivers, go to Care.com.