Disorders connected to an issue with the developing brain (cerebral)
that affects the control and use of a person’s muscles (palsy)
THERE ARE 4 MAIN TYPES AND SOMETIMES VERY DIFFERENT EFFECTS
Some may just walk a little differently, others may have seizures, challenges with seeing, hearing and speaking, and be unable to walk at all.
can cause stiffness in different parts of the body, on only one side, all four limbs, and other challenges as well
can make controlling movements difficult, whether with limbs, hands and feet or the face and tongue
affects balance and coordination and can make everything from walking or writing challenging
the label used with anyone who has symptoms of more than one type
THE FIRST SIGNS
• A child who doesn’t roll over, sit, stand and start walking around the same age as other kids.
• A baby under 6 months who is so floppy her head lags, or if she is stiff, pushes away or crosses her legs oddly when picked up.
• A baby under 10 months who doesn’t roll over, bring her hands together or bring them to her mouth.
• An infant who crawls unevenly, using one hand and leg more than the other side, or scoots around on his backside or knees.
Call your doctor or ask for assistance when you see these signs.
Diagnosing CP earlier means getting started on helpful interventions sooner.
Remember, your child may have some of these delays and not have CP.
Autism is a label that is used to describe very different individuals so is not always clear or helpful
WHAT CAUSES A DISABILITY?
Sometimes the cause of a disability is clear, and in other cases it is not even all that important. But the explanation is often found in one of these three places.
There are disorders that explain why a child is born with a condition that causes disabilities. Some of these are common and have names (like Down Syndrome) and many are so rare that not very much is known about it.
An infection during pregnancy, untreated jaundice or an illness in a very young child that affects the brain can all cause lasting problems.
There are many kinds of trauma that can cause developmental delays and problems in later life. Here are two of the most common.
Birth trauma can cause damage to the brain, often because the baby did not get oxygen during the delivery.
A head injury can be serious for any person, but when a child has a traumatic brain injury it can affect their development. Of course, toddlers and little kids bang their heads all the time without being badly hurt.
A challenge with a child is often noticed when they are not developing as expected, or not reaching developmental milestones. It’s always good to check with a doctor if you think, your child is not developing.
AT 2 MONTHS
Babies respond to things
• their parent’s voices
• bright colors
AT 6 MONTHS
• pick up objects
• roll over
• turn when their name is called
AT 1 YEAR
• Start to sit up and stand
• play simple games
• wave bye-bye.
AT 2 YEARS
• feed themselves with a spoon
• show affection
AT 3 YEARS
• start to play with other kids
• use sentences
• learn skills like putting on their shoes
• opening doors
• riding a tricycle
AT 4 YEARS
• understand numbers
• counting and time (a little)
• speak in 5 or 6 word sentences
• remember and tell stories
AT 5 YEARS
• dress and undress without help
• swing and climb
• can learn to print some letters.
YOUR CHILD TESTED
The sooner a child with challenges gets help, the better. Of course, you can only do something to help once a challenge has been noticed, and with real children in the real world, that’s not always so easy.
Your child’s doctor or teacher, or even a friend or babysitter with experience may suggest testing if they see signs that your child is not progressing like other children. Getting your child tested may turn up nothing out of the ordinary, or it may help you identify strengths as well as issues that need attention.
As parents, you also want to know what to look for. During a regular doctor visit children are checked to see if they are reaching their developmental milestones. But as parents you may be the first to notice that your child isn’t growing, walking or talking like other children their age.
SPEECH & LANGUAGE
A real delay in learning to speak
Trouble understanding language
Speaking in an odd voice
Speaking in a flat tone
Odd walk or body posture
Getting stuck on one topic
WITH OTHER PEOPLE
Not making eye contact
Not showing interest in other people
Not responding when someone is hurt or crying
Unusual trouble separating from a parent
Every child grows in their own way and none of these mean your child has a problem. Almost every child gets clingy with a parent at some point or seems to only be interested in one friend or topic. When you’re told not to worry because ‘She’s just doing things in her own time or ‘He’ll catch up with himself’ it may be exactly right, and tests may support that opinion. That’s always good, but so is finding out when early intervention is needed.
The plans that help kids who need help
Remember, plans are designed to change with a child.
PARENTS WITH A
Balance is Everything.
Most parents make a big deal about little things at some point, whether about a missed nap, a slight fever or the first day of kindergarten. But when a child has a disability, it can be hard to avoid making parenting a project.
After all, most children grow up just fine without a parent hovering over them, but that’s ‘most kids’. Parents of a child with differences are often way too tired and stressed, which makes everything harder.
No one wants to miss an opportunity to be helpful with a child who needs the extra help, but it’s important to be realistic. Sometimes good enough really is good enough. The Occupational Therapist encouraged you to let her do every button herself, but this morning you were running late and didn’t have the time. Good enough. You’re encouraging him to use words but sometimes just hand him the toy he points to before he gets frustrated. Good enough.
Every family needs balance, yours included.
If you want to appreciate the power of love, see how even the youngest sister or brother looks after a sibling with a difference.
But siblings have other feelings as well. It’s not only that every child feels angry or impatient with a brother or sister at times. When there is a difference in the family, it is common for siblings to feel they need to be perfect. After all, their parents are dealing with so much already and they aren’t the ones living with unusual challenges.
Parents can’t make that feeling disappear, but they can make it OK to complain, to share negative feelings, to be angry and resentful. She can be protective of her little brother but also feel embarrassed when strangers stare. He may be proud of his sister but also get annoyed when she gets praise for doing things he does even better.
Children with differences may be defined by their imperfection, but their brothers and sisters should also be allowed to be less than perfect.
Taking the Bad with the Good.
Grandparents don’t always have an easy time adjusting to the fact that their adored grandchild has a disability.
They may not fully understand what the challenges are or simply be scared. It’s not uncommon for grandparents who have never heard some of the terms now being used to suspect that too much fuss is being made about a child who is just ‘going through a phase’.
The reality is that grandmothers and grandfathers of a child with individualized needs are often needed more, but end up feeling the opposite. And all the little disagreements and differences of opinion that happen between two generations can get that much worse. That just makes patience and good faith more important. After all, what everyone in the family shares is love for the child concerned.
TIME OUT TOGETHER
When you’re still getting used to having a child with needs that take up a lot of time and space, it can feel like you’re never going to have time to relax together.
But parents who are bit further down the road can tell you something surprising. The fun times can be more fun, there are often more opportunities to celebrate, and somehow happy occasions together can be even sweeter.
No one hopes their child will have challenges, but the truth is that dealing with all this can be enriching to a family in many unexpected ways. Ordinary achievements –she fed herself! He held the dog’s leash! –can be the occasion for a celebration when they represent a small but important step forward. And even when there is no reason, taking the time to step away from real life to just enjoy time together is important.
There are tough and sometimes even truly painful days in the life of any family. For families that have more than their share of those, it’s that much more important to take time out.
GOOD ENOUGH PARENT
THE PERFECT WAY
Try to do everything right as a parent.
Find out this is impossible.
Get mad at yourself.
Try to always do exactly what the therapist
or doctor suggested.
Find out this is impossible. Get mad at
the therapist or doctor.
Expect your child to always
behave in public.
Find out this is impossible. Get mad
at your child and embarrassed.
Always expect to know exactly
what to do.
Find out you don’t. Get mad at
your parents for not teaching you.
ADMIT YOU’VE IMPERFECT.
RETURN TO 1 AND TRY HARDER.
THE RIGHT WAY
Try to be a good enough parent.
Find out this could work.
Try to do what the therapist or
doctor suggested whenever you can.
Find out this works well enough,
Expect your child to behave well in public when
they’re not tired, cranky or just impatient.
Find out no one dies from embarrassment.
Feel good to be out of there.
Give it your best shot,
because there is no guidebook
Feel free to share this news:
someone has to tell your children.
FEEL GOOD (ENOUGH).
PEOPLE FEEL SORRY FOR YOU
You’re told ‘You are being so brave about all this!’ or ‘I don’t know how you do it’
YOU FEEL BETTER
You might gently help them see why that’s silly: it’s your child, not your burden
Try: ‘All children have challenges: we’re not so different from any other family
Or: ‘We have more to celebrate because every small step can be a big deal’
YOU FEEL PROUD YOU MADE AN EFFORT
You wonder if they are right
YOU FEEL TERRIBLE AND YOU’RE NOT EVEN SURE WHY, EXACTLY
If that kind of remark sounds a lot like ‘how unfortunate!!’
Try: ‘She reminds us every day it’s OK to not be perfect. Who does that for you?
We all have needs: Is yours saying things like that?
Every child has challenges to overcome—even yours!
YOU DON’T FEEL ANNOYED ANYMORE
IF IT WAS EASY, YOU WOULDN’T BE READING THIS
For most children, making friends is as natural as going down a slide in a playground, hanging out with other children or riding a tricycle. It just happens.
Except when it doesn’t.
When a child with a disability finds it difficult to make friends, there may be a reason. They can’t keep up, they don’t make eye contact, respond to social cues or speak clearly. It doesn’t mean we don’t all need friends. We do.
If it was easy, you wouldn’t be reading this
Disabilities and delays don’t always present a barrier to making friends, but they don’t often make it any easier.
Things can get more complicated for many as children get older and fitting in depends more on participating in sports and knowing the music, games and movies the others are talking about. When children are old enough to go to school the business of fitting in with others requires social skills, sports ability and understanding cultural references come into play.
It helps to remember that many parents with perfectly typical children watch their kids struggle to figure out friendships. It can be heartbreaking to see your child left out when it seems all the other’s are having fun together, and every parent learns that this is one place where you not be able to do everything you wished you could to ease your child’s path in life.
There are no easy answers, but it helps to talk and share experiences with other parents and experts who understand. This is the start of that conversation.
Some parents today are old enough to remember being amazed by their first video call. And anyone old enough to be grandparents may still be dazzled by all that, because now there are programs to help senior citizens socialize with ‘tele-visiting’…. and they are often very popular!
Older people aren’t the only ones who may be grateful to discover that they can find friends and companionship online. Virtual connections make it easier to find others who share the same interests, like to watch movies together or just hang out. Not everyone has a computer or smartphone, but a nearby library or your child’s school can often help.
If your son or daughter finds it difficult to make friends in the usual ways, this may be just right for them. And for some–including children who aren’t able to speak clearly or interact in a crowd–chatting with the help of text can be a life changer.
When parents get worried about their children’s social lives, they may just simply be focused on the wrong things. After all, children learn what friendship means over time and sometimes take a while to figure out where they fit in. Everyone who remembers being a kid knows it isn’t always easy, and most parents try not to get over-involved.
If you have a child with challenges, it is sometimes very clear that they may not be able to work it out on their own.
It is not easy, but patience is really important. Putting your child among other kids to encourage friendships, whether at an activity group or in playground, is a good start. It may feel painfully slow. Even if you’ve got used to seeing your child work harder than most, it can be really painful to watch them try to connect with others and just not get it right.
Sometimes a child’s first friend isn’t another kid. All his adult life, Fred Rogers heard from people whose shyness or disabilities made them lonelier than most, and what they told him was remarkably similar: watching his program was like spending time with a friend. Of course, he was an adult broadcasting from a studio, but many, many children didn’t seem to mind.
We also know that there are children who are so deeply connected to a pet that they cannot imagine growing up and feeling good about themselves without that companionship. Research tells us how deep this can go, and we now see specially trained animals having a life-changing effect on individuals with many kinds of challenges.
Community is hard to define, but we know what it means to feel that you are part of something bigger than your immediate family. Typically, happens school or the neighborhood enlarges a child’s world. But not all children are typical.
It may take a little effort and a few tries, but being a parent sometimes means looking at things from new and unfamiliar perspectives. Wishing others would befriend your child is understandable, but there are times when trying a different approach might be more successful.
ABA Applied Behavioral Analysis
ABC Antecedent, Behavior, Consequence
ADA American with Disabilities Act
ADD Attention Deficit Disorder
ADHD Attention Deficit Hyperactivity Disorder
ADLs Activities of Daily Living
ADR Alternative Dispute Resolution
AIM Accessible Instructional Material
APE Adaptive Physical Education
APR Annual Performance Progress
ASD Autism Spectrum Disorder
ASL American Sign Language
AT Assistive Technology
AYP Adequate Yearly Progress
BEESS Bureau of Exceptional Education and Student Services
BD Behavioral Intervention Plan
CAPD Central Auditory Processing Disorder
CBI Community Based Instruction
CC Closed Captioning
CERT Considerations for Educationally
CF Cystic Fibrosis
CP Cerebral Palsy
DD Developmental Delay
DS Down Syndrome
EBD Emotional Behavioral Disorder
ESE Exceptional Student Education
ESOL English for Speakers of Other Languages
ESY Extended School Year
FAPE Free Appropriate Public Education
FBA Functional Behavioral Assessment
FC Facilitated Communication
FERPA Family Educational Rights Privacy Act
GE General Education
GT Gifted and Talented
HI Hearing Impaired
HoH Hard of Hearing
IA Instructional Assistant
ID Intellectual Disabilities
IDEA Individuals with Disabilities Education Act
IEE Independent Educational Evaluation
IEP Individualized Education Program
IFSP Individualized Family Support Plan
IHE Institute of Higher Education
LD Learning Disability
LEA Local Education Agency
LEP Limited English Proficiency
LRE Least Restrictive Environment
MD Muscular Dystrophy
MD Multiple Disabilities
MH Multiply Handicapped
MDR Manifestation Determination
MTSS Multi-Tiered System of Support
NIMAS National Instructional Materials Accessibility Standard
OCD Obsessive-Compulsive Disorder
ODD Oppositional Defiant Disorder
OHI Other Health Impairment
OI Orthopedic Impairment
OT Occupational Therapy
PBIS Positive Behavior Intervention Supports
PD Physical Disability
PDD Pervasive Developmental Disorder
PLEP Present Level of Educational Performance
PLP Present Level of Performance
PT Physical Therapy
RDA Results-Driven Accountability
RS Related Services
RTI Response to Intervention