Early Intervention Series: Part III: What are delays and eligible diagnoses?

Part I: What is Early Intervention?
Part II: How do I know if my child needs EI and who do I contact?

First, I want to define and discriminate between a developmental disability, a developmental delay and a diagnosis. All three are seen in EI and addressed by EI therapies, however they are different, they have different outcomes generally, and are addressed in different manners.

What is a developmental disability?
For explanation I turn to wikipedia:

"Developmental disability is a term used to describe life-long disabilities attributable to mental and/or physical impairments, manifested prior to age twenty-two (I've heard 21), affecting daily functioning in three or more of the following areas:

• capacity for independent living
• economic self-sufficiency
• learning
• mobility
• receptive and expressive language
• self-care/self-direction

Frequently, people with mental retardation, Cerebral Palsy, Autism spectrum disorder, various genetic and chromosomal disorders such as Down syndrome and Fragile X syndrome, and Fetal Alcohol Spectrum Disorder are described as having developmental disabilities.Developmental disabilities are usually classified as severe, profound, moderate or mild, as assessed by the individual's need for supports, which may be lifelong."

So, a disability is generally a lifelong issue, although there are exceptions to every rule. And diagnoses are sometimes interchangeable with developmental disability, but not always. Got it? Good. That's how EI is, ever changing and confusing.


What exactly is a developmental delay?
A developmental delay is simply that, a delay in development and skills one would be expected to have at any given age. It differs from a developmental disability in that, it's usually not a lifelong issue. Parents with more than one child often notice a difference or a 'lag' in one of their child's skill areas; as being slower from their other children's development. First time parents may not notice these lags as easily, having nothing to compare to. Doctors often make the referrals for a screening or evaluation during a well child check, when they notice the child is behind in physical or communication skills, as they are the most easily spotted delays.

A child must have a 33% delay in one developmental domain, or 25% delay in 2 or more developmental domains to qualify for EI services. This varies with age and skill expecation for the age. Domains include: social/emotional, cognitive, communication, physical and selfhelp/adaptive skills. An EI evaluation will confirm suspected delays in one or more areas.

What are red flags I might notice in my child's development, signaling a developmental delay; or signaling the need for further evaluation?

Physical concerns:
*Seems either very stiff or very floppy like a rag doll; uses one side more than the other (at any age)
*Lack of head control by 4 months
*Cannot grasp a rattle or toy by 4 months
*Not rolling or attempting to roll by 6 months
*Cannot sit with help when the body is put in a sitting position by 7 months.
*Does not crawl or drags one side while crawling by 12 months
*Cannot stand when supported by 12 months
*Not using pincer grasp by 12 months
*Cannot push a wheeled toy by 18 months
*Does not walk by 18 months or walks exclusively on the toes, or other atypical motor pattern.

Social/language/cognitive concerns:
*Does not respond to sounds or turn her or his head to locate sounds by 6 months.
*Does not laugh, make squealing sounds, smile spontaneously, babble, try to attract attention, or show interest in peek-a-boo by 7 months.
*Does not point to objects or pictures, or search for objects that are hidden while he or she watches, by 12 months
*Says no single words (or word approximations such as "ba" for ball) by 12 months
*Does not learn to use gestures, such as waving, head shaking, peekaboo, clapping, by 12 months
*Does not speak at least 15 words and begin to use two-word sentences 18 months
*2 year olds should have a minimum of 50 words (about 70% intelligible to familiar people)
*Does not seem to know the function of common household objects like telephones and utensils by 18-24 months
*Does not imitate actions or words or follow simple instructions such as "give mommy the ball" by 24 months

Feeding/oral motor concerns:
*Not being able to swallow or accept spoon properly a month or so after food has been introduced.
*Not being able to accept various textures, thicknesses of foods
*Refusal of table foods/solids, preference for babyfoods/purees.
*Excessive spillage from bottle, breast or spoon while eating (babies new to solids will dribble at first)
*Inability to swallow properly, take food from spoon, or form good seal around nipple (newborns) --some children are tongue tied making this hard to do.
*Preference for one particular food/drink, refusal to accept others
*Not finger feeding self, interest in utensils by 12-18 months

*A regression in any skill your child has mastered and suddenly stops doing. This happens occasionally, a child might 'forget' the skill for a short time, but should be able to do it again.

Any atypical behaviors:
*hand-flapping
*constant head-banging (not just during tantrums, all the time)
*excessive (abnormal/atypical) 'energy' or need to run, jump, crash into things
*abnormal rocking of head and/or body
*lack of safety awareness
*continued uncoordinated movements, clumsiness

Other Sensory type behaviors:
*tags on shirts bothers skin
*can't touch certain textures (paint, pudding, koosh balls, etc. some children actually gag or drool if they touch certain textures.)
*inability to handle loud noises, crowds, many activities at once (overstimulation)
*inability to focus in those loud, crowded environments
*love of deep pressure, aversion to light touch (some of these kids love to hit so they can feel that *deep pressure input, loves jumping off couches and big bear hugs);
*or the opposite-cannot stand deep touches
*loves swinging, spinning excessively; or opposite-fear of swinging, spinning, being off the ground
*refusal to be bathed, hair washed, teeth brushed, hair cut, etc.
*difficulty transitioning from one activity, or place, to another

*Any feeling that your child's skills 'just aren't right' or 'a bit off'. Listen to that mommy intuition.

Many pediatricians tell parents to wait, and wait, and wait, with many excuses (he's a boy, boys talk late; s/he's a middle child, they're behind the eldest always; s/he's the baby of the family, everyone else talks for them; they'll catch up; it's no big deal; every child is different; don't worry; wait it out; etc.) and you risk losing valuable time doing that.

This site has great milestones divided by age and domain.


What are (recognized) diagnoses?
For EI, some diagnoses automatically qualify a child for services. It doesn't determine the amount of service a child receives, as that is decided by the team and how much of a delay the child shows due to that diagnosis. Some diagnoses are made before birth via ultrasound and testing (such as Down syndrome, or heart/brain/limb abnormalities). Some are made at birth due to appearance and physical indicators, and yet others are not diagnosed for months or years depending on the characteristics and symptoms a child shows.

Some common automatic EI qualifiers:
Autism/PDD
Down Syndrome
Prematurity (certain extreme low birth weights)
HPLH syndrome
profound deafness/hearing impairment
blindness
Cerebral Palsy
certain neurological, metabolic, or genetic disorders, chromosomal anomaly,
honestly there are several more, and I should have looked at my reference manual before I blogged this tonight!


Helpful sites:
Red Flags for Autism: http://www.firstsigns.org/concerns/flags.htm
Zero to Three: www.zerotothree.org
http://www.healthychild.net/articles/sh39redflag.html

Next up: Part IV: Process for receiving EI services