Parents of children with Special Needs

What does 'special needs' mean?

The term 'special needs' is used to collectively define those that require assistance due to physical, mental, behavioral, or medical disabilities or delays. This term is used in clinical diagnostics as well as in functional and educational settings. Autism, learning disabilities, and Down syndrome are all examples of 'special needs'.

Early Intervention:

Early intervention services are often provided at reduced or no cost to parents of children that have been diagnosed as developmentally delayed or disabled. Their purpose is to give children age-appropriate intensive interventions in order to improve the children's outcome. To find state-specific information on Early Intervention services go to:

www.nichcy.org/Pages/StateSpecifiInfo.aspx

Coping:

When your child is diagnosed as having special needs, families can feel and react in many different ways. Some may even feel relief when they finally have a name to put on their children's behaviors, and therefore can begin to plan what needs to be done next. Many reactions to the diagnosis are common such as: grief, anger, denial, guilt, and confusion. At some point, families tend to find acceptance, and can then begin looking to the future. It is important to realize that anything you may be feeling is completely normal, and to give yourself time to process through those feelings. While you are dealing with possible feelings of loss, grief, and anger there are things you can do to help yourself feel less powerless and uncertain:

  • Be patient with yourself, don't rush acceptance--it will come when you are ready
  • Talk about how you feel with friends, family, a therapist, or write in a journal
  • Learn all you can about your child's disability--the more informed you are, the less you will feel alone and confused about what the future might hold
  • Join a support group--talking to others who have been through and are going through the same thing you are can be a great help
  • Don't forget yourself in dealing with your child, find something you can do just for you that will help you 'take a break' from dealing with, thinking about, and talking about your child's disability
  • Focus on the fantastic things about your child--find the things they can do and do them! Remember that this diagnosis does not define your child, it is just one part of who they are, like the color of their eyes or hair
  • Begin therapy immediately for your child! Whichever therapy is available and needed, whether is is occupational therapy, physical therapy, speech therapy, or behavioral therapy: the sooner you and your child begin, the sooner it can help!

Red Flags and warning signs

Down syndrome 

  • A few of the common physical traits of Down syndrome are: low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all
  • People with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses. Children with Down syndrome learn to sit, walk, talk, play, and do most other activities; only slightly later than their peers without Down syndrome

National Down Syndrome Society

 

ADD/ADHD 

Inattention, hyperactivity, and impulsivity are the key behaviors of ADHD. It is normal for all children to be inattentive, hyperactive, or impulsive sometimes; but for children with ADHD, these behaviors are more severe and occur more often. To be diagnosed with the disorder, a child must have symptoms for 6 or more months and to a degree that is greater than other children of the same age.

Children who have symptoms of inattention may:

  • Be easily distracted, miss details, forget things, and frequently switch from one activity to another
  • Have difficulty focusing on one thing, or become bored with a task after only a few minutes
  • Have difficulty organizing and completing a task or learning something new
  • Have trouble completing or turning in homework assignments, often losing things needed to complete tasks or activities
  • Not seem to listen when spoken to; daydream, become easily confused, and move slowly
  • Have difficulty processing information as quickly and accurately as others
  • Struggle to follow instructions

Children who have symptoms of hyperactivity may:

  • Fidget and squirm in their seats
  • Talk nonstop
  • Dash around, touching or playing with anything and everything in sight
  • Have trouble sitting still during dinner, school, or story time
  • Be constantly in motion
  • Have difficulty doing quiet tasks or activities

Children who have symptoms of impulsivity may:

  • Be very impatient
  • Blurt out inappropriate comments, show their emotions without restraint, and act without regard for consequences
  • Have difficulty waiting for things they want or waiting for their turn when playing games
  • Often interrupt conversations or others' activities

National Institute of Mental Health

 

Dyslexia 

The problems displayed by individuals with dyslexia involve difficulties in acquiring and using language--reading and writing letters in the wrong order is just one manifestation of dyslexia and does not occur in all cases. Other problems experienced by individuals with dyslexia include:

  • Learning to speak
  • Organizing written and spoken language
  • Learning letters and their sounds
  • Memorizing number facts
  • Spelling
  • Reading
  • Learning a foreign language
  • Correctly doing math operations

Not all students who have difficulties with these skills are dyslexic. Formal testing is the only way to confirm a diagnosis of suspected dyslexia.

Young Children:

Signs of dyslexia in young, preschool children include: talking later than expected, a slowness to add new words, difficulty rhyming, and trouble following multi-step directions. After a child begins school, the signs of dyslexia include:

  • Difficulty reading single words, such as the word on a flashcard
  • Difficulty learning the connection between letters and their sounds
  • Confusing small words, such as at and to
  • Letter reversals, such as d for b
  • Word reversals, such as tip for pit

Having one of these signs does not mean your child has dyslexia; many children reverse letters before the age of 7. But, if several signs exist and reading problems persist, or if you have a family history of dyslexia, you may want to have your child evaluated.

Younger Students:

Does your 1st, 2nd, or 3rd grader...

  • Remember simple sequences such as: counting to 20, naming the days of the week, or reciting the alphabet?
  • Have an understanding of rhyming words, such as knowing that hat rhymes with cat?
  • Recognize words that begin with the same sound, for example: that bird, baby, and big all begin with b?
  • Easily clap hands to the rhythm of a song?
  • Frequently use specific works to name objects rather than words like 'stuff' and 'that thing'?
  • Easily remember spoken directions?
  • Remember names of places and people?
  • Show understanding or right/left, up/down, front/back?
  • Sit still for a reasonable period of time?
  • Make and keep friends easily?

Answering "no" to some or most of these questions may indicate a learning disability. Not all students who have difficulties with these skills are dyslexic. Formal testing is the only way to confirm a diagnosis of suspected dyslexia.

International Dyslexia Association

 

Autism 

In clinical terms, there are few 'absolute indicators', often referred to as 'red flags’ that indicate a child should be evaluated. If you baby shows any of these signs, please ask your pediatrician or family doctor for an immediate evaluation.

  • No big smiles or other warm, joyful expressions by 6 months
  • No back-and-forth sharing of sounds, smiles, or other facial expressions by 9 months
  • No babbling by 12 months
  • No back-and-forth gestures, such as pointing, showing, reaching, or waving by 12 months
  • No words by 16 months
  • No two-word meaningful phrases (without imitating or repeating) by 24 months
  • Any loss of speech or babbling or social skills at any age

Autismspeaks.org & Firstsigns.org

A person with autism also might:

  • Not respond to their name by 12 months
  • Not point at objects to show interest (like an airplane flying overhead) by 14 months
  • Not play 'pretend' games (like pretend to 'feed' a doll) by 18 months
  • Avoid eye contact and want to be alone
  • Have trouble understanding other people's feelings or talking about their own feelings
  • Have delayed speech and language skills
  • Repeat words or phrases over and over (echolalia)
  • Give unrelated answers to questions
  • Get upset by minor changes
  • Have obsessive interests
  • Flap their hands, rock their body, or spin in circles (self-stimulatory behavior, or 'stimming')
  • Have unusual reactions to the way things sound, smell, taste, look, or feel

Center for Disease Control

 

Cerebral Palsy 

The signs of cerebral palsy vary greatly because there are many different types and levels of disability. The main sign that your child might have cerebral palsy is a significant delay reaching the motor or movement milestones. If you see any of these signs, call your child's doctor.

A child over 2 months with cerebral palsy might:

  • Have difficulty controlling head when picked up
  • Have stiff legs that cross or 'scissor' when picked up

A child over 6 months with cerebral palsy might:

  • Continue to have a hard time controlling head when picked up
  • Reach with only one hand while keeping the other in a fist

A child over 10 months with cerebral palsy might:

  • Crawl by pushing off with one hand and leg while dragging the opposite hand and leg
  • Not sit by himself or herself

A child over 12 months with cerebral palsy might:

  • Not crawl
  • Not be able to stand with support

A child over 24 months with cerebral palsy might:

  • Not be able to walk
  • Not be able to push a toy with wheels

Center for Disease Control

 

Speech/Language Delays 

An infant who is not responding to sound or who is not vocalizing is of particular concern. Between 12 and 24 months, reasons for concern include a child who:

  • Is not using gestures, such as pointing or waving by 12 months
  • Prefers gestures over vocalizations to communicate by 18 months
  • Has trouble imitating sounds by 18 months
  • Has difficulty understanding simple verbal requests

Seek an evaluation if a child over 2 years old:

  • Can only imitate speech or actions and does not produce words or phrases spontaneously
  • Says only certain sounds or words repeatedly and cannot use oral language to communicate more than his or her immediate needs
  • Cannot follow simple directions
  • Has an unusual tone of voice (such as raspy or nasal sounding)
  • Is more difficult to understand than expected for his or her age
  • Parents and regular caregivers should be able to understand about half of a child's speech by 2 years old and about three-quarters of their speech by 3 years old
  • By 4 years old a child should be mostly understood, even by people who do not know the child

kidshealth.org

Fetal Alcohol Syndrome (FAS) 

Fetal Alcohol Syndrome is 100% preventable if a woman does not drink alcohol during pregnancy.  There is NO known safe amount of alcohol to drink while pregnant.  There is also no safe time during pregnancy to drink and no safe kind of alcohol.

Signs a child might have fetal alcohol syndrome may include:

      • Been born small/low birth weight
      • Problems eating and sleeping
      • Problems seeing and hearing
      • Small head circumference
      • Failure to thrive
      • Developmental delay
      • Organ dysfunction
      • Facial abnormalities, including smaller eye openings, flattened cheekbones, and indistinct philtrum (an underdeveloped groove between the nose and the upper lip)
      • Epilepsy
      • Poor coordination/fine motor skills
      • Poor socialization skills, such as difficulty building and maintaining friendships and relating to groups
      • Lack of imagination or curiosity
      • Learning difficulties, including poor memory, inability to understand concepts such as time and money, poor language comprehension, poor problem-solving skills
      • Behavioral problems, including hyperactivity, inability to concentrate, social withdrawal, stubbornness, impulsiveness, and anxiety
      • Need medical care all their lives

Missouri Affiliate of the National Organization on Fetal Alcohol Spectrum Disorders

Midwest Regional Fetal Alcohol Syndrome Training Center

 


 

 Available Therapies 

Physical therapy (PT)  

  • What is it? 
    • Doctors recommend PT for injuries or movement problems associated with illness or disability. 
    • Physical therapists can often relieve pain and help children with daily activities.  
    • PT can help children gain or regain strength, range of motion, and learn to prevent injury. 
  • Who needs it? 
    • developmental delays
    • cerebral palsy 
    • genetic disorders
    • orthopedic disabilities
    • heart and lung conditions
    • birth defects (such as spina bifida)
    • effects of in-utero drug or alcohol exposure
    • acute trauma
    • head injury
    • limb deficiencies
    • muscle diseases
  • What to look for in a physical therapist and how to find one:
    • PTs must have either a master’s degree in physical therapy, or a doctoral degree in physical therapy (DPT) & have passed a state-administered licensure exam
    • PTs can be found through local hospitals, private practices, and rehabilitation facilities. Can also ask your regular doctor for a referral.

Speech Therapy/Speech-Language Pathology (SLP)

  • What is it?
    • Speech-language therapy is the treatment for most kids with speech and/or language disorders. A speech disorder refers to a problem with the actual production of sounds, whereas a language disorder refers to a difficulty understanding or putting words together to communicate ideas.
  • Who needs it?
    • hearing impairments
    • cognitive (intellectual; thinking) or other developmental delays
    • weak oral muscles
    • birth defects such as cleft lip or cleft palate
    • autism 
    • motor planning problems
    • respiratory problems (breathing disorders)
    • swallowing disorders
    • traumatic brain injury
  • What to look for in a speech-language pathologist (SLP) and how to find one:
    • SLPs need at least a master's degree and state certification/licensure in the field, as well as a certificate of clinical competency from ASHA 
    • SLPs can be found through phone book (make sure to check for appropriate credentials); you can get referrals from the school system or from your regular doctor.

Occupational Therapy (OT)

  • What is it?
    • Occupational therapy treatment focuses on helping people achieve independence in all areas of their lives. OT can help kids with various needs improve their cognitive, physical, and motor skills and enhance their self-esteem and sense of accomplishment. Occupational therapists can evaluate kids' skills for playing, school performance, and daily activities and compare them with what is developmentally appropriate for that age group. OTs focus on not only gross (large) motor skills, but fine (small) motor skills as well.  
  • Who needs it? 
    • birth injuries or birth defects
    • sensory processing disorders
    • traumatic injuries (brain or spinal cord)
    • learning problems
    • autism/pervasive developmental disorders 
    • juvenile rheumatoid arthritis 
    • mental health or behavioral problems
    • broken bones or other orthopedic injuries
    • developmental delays
    • post-surgical conditions
    • burns 
    • spina bifida
    • traumatic amputations
    • cancer 
    • severe hand injuries
    • multiple sclerosis, cerebral palsy, and other chronic illnesses
  • What to look for in an Occupational Therapist and how to find one:
    • There are two professional levels of occupational practice — occupational therapist (OT) and occupational therapist assistant (OTA).
    • Since 2007, an OT must complete a master's degree program (previously, only a bachelor's degree was required). An OTA is only required to complete an associate's degree program and can carry out treatment plans developed by the occupational therapist but can't complete evaluations.
    • All OT practitioners must pass state licensure exams.
    • OTs can be found through school system, rehabilitation clinics, hospitals, or your regular doctor can provide a referral. 

Applied Behavior Analysis (ABA) 

  • What is it?
    • Focuses on how behaviors (all behavior, not just misbehavior) are learned and how physical or social environments can affect behaviors and impact learning. Utilizes positive reinforcement techniques to increase useful behaviors and decrease behaviors that may be harmful or might interfere with learning. 
  • Who needs it?
    • Learners of all ages, with and without disabilities
    • Autism and related disorders
    • Neurodevelopmental disorders
    • Developmental delays
    • Chronic behavior concerns
    • Individuals who display inappropriate behavior which significantly interferes with their ability to learn or consistently utilize adaptive and/or communication skills, appropriately interact with others, and/or results in a more restrictive environment
  • What to look for in an ABA therapist and how to find one:
    • Board Certified Behavior Analysts®;  should have had supervised experience providing ABA therapy 
    • Typically in private practice or through private agencies; this makes checking for credentials very important when looking for ABA therapists.   

Local Resources for therapy options

Local Resources to find additional help 


At home tips:

Parenting a child with a disability will require a lot of structure at home. This will help not only the child, but you and your family as well. Routine and communication will become even more essential.

  • Keep records about your child -- you know your child better than anyone and your advice and input may help professionals who work with your child
  • Keep open lines of communication -- siblings may have questions or concerns about the disability or how to explain it to friends, allow them to openly talk about their feelings with you
  • Find a routine that works for your family and stick to it -- having something ordered and dependable can help when other things around you are chaotic and out of your control

At school tips:

Sending a child with a disability off to school can be a stressful time for families. Keeping communication open between you and your child's school is extremely important in order to ensure your child's needs are being met appropriately. When teachers and families can openly communicate, they are able to work together for the benefit of the child.

  • Teachers are able to send information home to help the parents maintain consistency for both school and home
  • Parents can offer added insight into their child's behaviors, and may know strategies that can help teachers more effectively educate the child
  • Have a communication journal go back and forth to school in your child's backpack, this allows both parents and teachers to make comments regarding the child. Don't just use the journal to report 'negatives', make sure you are praising the children's efforts, too!
  • Use phone calls, emails, and parent/teacher conferences to keep up to date about your child's behavior, work, schedule, and progress at school

Links for Special Needs families

 General

Local Resources

Down syndrome

Dyslexia

ADD/ADHD

Autism

Physical Disabilities

Fetal Alcohol Syndrome

 

  • National Organization on Fetal Alcohol Syndrome (NOFAS)
  • Department of Health and Human Services, Center for Disease Control and Prevention, Fetal Alcohol Spectrum Disorders
  • Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Fetal Alcohol Spectrum Disorders
  • Click here for a video clip on the dangers of drinking during pregnancy.

Learning websites for Children

These websites can help children with reading skills, math readiness, and their overall ability to focus. The games they can play are fun, and they are also educational which will add to their scholastic abilities. Playing these educational games also allows children to go at their own pace, without getting frustrated or feeling embarrassed.

Support Groups:

Online support groups

Listing of several disabilities and links to various support groups that can be joined online