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Special Needs

Special Needs Report

I seen this on another site called Forever a family here is their link.

http://berzenji.blogspot.com/p/special-needs-report.html

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Albinism
The applicants understanding of the special need:

The applicants understand “albinism” refers to a group of inherited conditions. People with albinism have little or no pigment in their eyes, skin, or hair. They have inherited altered genes that do not make the usual amounts of a pigment called melanin. One person in 17,000 in the U.S.A. has some type of albinism. Albinism affects people from all races. Most children with albinism are born to parents who have normal hair and eye color for their ethnic backgrounds. Sometimes people do not recognize that they have albinism. A common myth is that people with albinism have red eyes. In fact there are different types of albinism and the amount of pigment in the eyes varies. Although some individuals with albinism have reddish or violet eyes, most have blue eyes. Some have hazel or brown eyes. However, all forms of albinism are associated with vision problems.

Effects of the special need and what it means to the applicants:

The applicants feel that the major effects of albinism are the vision issues, sensitivity to sunlight and the psychological effects which may impact a person with albinism. However, the applicants feel that all these needs can be addressed by the family. Vision problems may require slight adjustments to some of the family routines, while it is understood that most people who have vision related problems due to albinism have what is called low vision - not blindness. The family also feels that they have a healthy enough family unit to deal with any emotional issues which may arise due to the albinism.

Experience with the special need:

The applicants know a family who has adopted a child with albinism and have learned about the social stigmas, discrimination, and physical challenges which come with the special need.

 Arthrogryposis

Arthrogryposis is a neuro-musculo-skeletal disorder that affects various joints in the body. The condition is congenital and non progressive. The medical terminology for the disorder is Arthrogryposis Multiplex Congenita.

The joints in the body show contractures, stiffness, poor mobility or immobility and muscle fatigue.


Mobility Problems
The applicants understanding of the special need:

The applicants described people with mobility difficulties as those who have greater challenges in making active living part of their lives. This may be caused due to medical issues such as paraplegia, quadriplegia, osteoporosis, arthritis or those who are frail and worried about falling or have lower limb injuries.

Effects of the special need and what it means to the applicants:

The applicants understand that having a child with mobility problems will require different ways of travelling with the family. Special considerations may be required for their vehicles as well as special medical equipment to help promote as much mobility as possible. Depending on the severity of the condition there may be secondary health relates conditions, such as light headedness (with the blood staying in the legs and feet), infections (bed sores, fluid in the lungs, etc), weak muscles and/or painful/stiff joints, constipation, reduced blood circulation resulting in pressure sores and inflamed veins.

Experience with the special need:

The applications have a daughter who has spina bifida, and although there are no mobility issues related to her particular case the applicants had to research possible side effects of spina bifida which includes mobility limitations.

Cleft Palate / Cleft Lip
The applicants understanding of the special need:

The applicants described cleft lip as a separation of the two sides of the lip. The separation often includes the bones of the upper jaw and/or upper gum. A cleft palate is an opening in the roof of the mouth in which the two sides of the palate did not fuse, or join together, as the unborn baby was developing. Cleft lip and cleft palate can occur on one side (unilateral cleft lip and/or palate), or on both sides (bilateral cleft lip and/or palate). Because the lip and the palate develop separately, it is possible for the child to have a cleft lip, a cleft palate, or both cleft lip and cleft palate.
Many clefts appear to be due to a combination of genetics and environmental factors. The risks of recurrence of a cleft condition are dependent upon many factors, including the number of affected persons in the family, the closeness of affected relatives, the race and sex of all affected persons, and the severity of the clefts.


Complications
The applicants understand that cleft may cause problems with feeding, ear disease, speech and socialization. That due to lack of suction, an infant with a cleft may have trouble feeding. An infant with a cleft palate will have greater success feeding in a more upright position, as gravity will help prevent milk from coming through the baby's nose if he/she has cleft palate.
The applicants also understand that individuals with cleft also face many middle ear infections which can eventually lead to total hearing loss.
The applicants understand that speech is both receptive and expressive. We learn to manipulate our mouth, tongue, oral cavity, to express ourselves. Hearing is related to learning to speak. Babies with palatal clefts may have compromised hearing and therefore, if the baby cannot hear, it cannot try to mimic the sounds of speech. Even before expressive language acquisition, the baby with the cleft palate is at risk for receptive language acquisition. Because the lips and palate are both used in pronunciation, individuals with cleft usually need the aid of a speech therapist.
Bonding with the infant or socializing may be interrupted by the unexpected appearance, unusual speech and the surgical interventions necessary.

Effects of the special need and what it means to the applicants:

A direct result of an open connection between the oral cavity and nasal cavity is velopharyngeal inadequacy (VPI). Because of the gap, air leaks into the nasal cavity resulting in a hypernasal voice resonance and nasal emissions. Secondary effects of VPI include speech articulation errors (eg, distortions, substitutions, and omissions) and compensatory misarticulations (eg, glottal stops and posterior nasal fricatives). Possible treatment options include speech therapy, prosthetics, augmentation of the posterior pharyngeal wall, lengthening of the palate, and surgical procedures.
A child born with a cleft frequently requires several different types of services, eg, surgery, dental/orthodontic care, and speech therapy, all of which need to be provided in a coordinated manner over a period of years. This coordinated care is provided by interdisciplinary cleft palate/craniofacial teams comprised of professionals from a variety of health care disciplines who work together on the child’s total rehabilitation.
The applicants understand that with all the possible effects and medical professionals having to be involved that there would be many trips to different doctors offices, the possibility of surgeries (and repeated surgeries during different stages of the childs growth) and a substantial time commitment working with the medical professionals and speech therapists to ensure that the child would be developing physically and emotionally well.
The applicants also understand that at a young age, the child may have difficulties feeding and special bottles and feeding habits can help.

Experience with the special need:

The applicants have no previous experience with cleft lip or pallet. They are aware of the special need (donating many Cleft Bottles to their orphanage in China) as some families in their last adoption group had adopted children with cleft lip and pallets.
The applicants however do have experience with Speech Therapists as two of their existing children have undergone Speech Therapy.

Heart Defects
The applications understanding of the special need:

The applications understand that Heart Defects can come in various severity's (from a simple heart murmur to requiring open heart surgery) and complications. The applicants have listed the Heart Defects they have knowledge of and their related complications.


Patent ductus arteriosus (PDA)
Before birth, a large artery (ductus arteriosus) lets the blood bypass the lungs because the fetus gets its oxygen through the placenta. The ductus normally closes soon after birth so that blood can travel to the lungs and pick up oxygen. If it doesn’t close, the baby may develop heart failure. This problem occurs most frequently in premature babies. Treatment with medicine during the early days of life often can close the ductus. If that doesn't work, surgery is needed.


Septal defect
This is a hole in the wall (septum) that divides the right and left sides of the heart. A hole in the wall between the heart’s two upper chambers is called an atrial septal defect, while a hole between the lower chambers is called a ventricular septal defect. These defects can cause the blood to circulate improperly, so the heart has to work harder. Some atrial septal defects can be repaired without surgery by inserting a thin, flexible tube into the heart and then releasing a device that plugs the hole. A surgeon also can close an atrial or ventricular septal defect by sewing or patching the hole. Small holes may heal by themselves or not need repair at all.


Coarctation of the aorta
Part of the aorta, the large artery that sends blood from the heart to the rest of the body, may be too narrow for the blood to flow evenly. A surgeon can cut away the narrow part and sew the open ends together, replace the constricted section with man-made material, or patch it with part of a blood vessel taken from elsewhere in the body. Sometimes, this narrowed area can be widened by inflating a balloon on the tip of a catheter (tube) inserted through an artery.


Heart valve abnormalities
Some babies are born with heart valves that do not close normally or are narrowed or blocked, so blood can’t flow smoothly. Surgeons usually can repair the valves or replace them with man-made ones. Balloons on catheters also are frequently used to fix faulty valves.


Tetralogy of Fallot
This combination of four heart defects keeps some blood from getting to the lungs. As a result, the blood that is pumped to the body may not have enough oxygen. Affected babies have episodes of cyanosis and may grow poorly. This defect is usually surgically repaired in the early months of life.


Transposition of the great arteries
Transposition occurs when the positions of the two major arteries leaving the heart are reversed, so that each arises from the wrong pumping chamber. Affected newborns suffer from severe cyanosis due to a lack of oxygen in the blood. Recent surgical advances make it possible to correct this serious defect in the newborn period.


Hypoplastic left heart syndrome
This combination of defects results in a left ventricle (the heart’s main pumping chamber) that is too small to support life. Without treatment, this defect is usually fatal in the first few weeks of life. However, over the last 25 years, survival rates have dramatically improved with new surgical procedures and, less frequently, heart transplants.

Effects of the special need and what it means to the applicants:

The applicants are aware that the severity of the heart defect will directly impact how the child will participate in family activities. They are also aware that the severity of the heart defect will also impact the level of medical care required. Surgeries may be required on an on going bases for the remainder of the child’s life.

Experience with the special need:

The applicants have provided day care (for over 3+ years) for a little boy who has a severe heart condition which has undergone open heart surgery many times. The applicants understand the medical risks and concerns associated with his severe heart condition, how his pace-maker operates, different devices which may interfere with his pace-maker (security scanners at department stores, etc), and signs to watch for if he is requiring medical attention.

Missing Digits
The applications understanding of the special need:

The applications understand the special need to include missing fingers or toes. Aside from the obvious missing digit, there would be no other special need, as a missing digit is not an indicator or other special needs.

Effects of the special need and what it means to the applicants:

The applicants expect that normal daily routines may be managed without supplemental aid or care. They also understand that in extreme cases, supplementary tools may be required to make daily care easier (such as special cutlery to make eating easier).

Experience with the special need:
The applicants have no previous experience with missing digits.


Facial Deformities
The applicants understanding of the special need:

The applicants understand that facial defects or deformities are deformities in the growth of the skull and facial bones. They understand that these are congenital deformities (present at birth) and can be corrected by reconstructive surgery. Face Defects or Deformities can be Craniofacial Deformities (affecting the skull), Maxillofacial Deformities (affecting the upper jaw) and Dentofacial Deformities (affecting the bony structure and teeth).
Some examples of facial deformities are:
Cleft Lip - Cleft Lip or Hare Lip is a birth defect where the upper lip is split or separated either in the middle, on one side or on both the sides.
Cleft Palate - Cleft Palate is a condition when there is a cleft or a gap in the palate or the hard part of the roof of your mouth
Facial Cleft - This is a rare Face Defect / Deformity where a bone or skin in the middle of the face may be missing.
Craniosynostosis - This is a congenital Face Defect where the sutures (fibrous joints) of the skull bones fuse inappropriately and prematurely.
Plagiocephaly - In this type of Face Defect / Deformity, the forehead and the brow stop growing. This Face Defect / Deformity produces a flattening of the forehead and the brow on the affected side while the forehead on the opposite side tends to be excessively prominent.
Brachycephaly - This type of Craniofacial Deformity refers to a wide and high forehead region to be wide and high and the eyes may appear wide apart.
Trigonocephaly - In this type of Face Defect / Deformity, the forehead looks pointed, like a triangle, with closely placed eyes. This Face Defect occurs due to closure of a suture that runs from the top of the head down the middle of the forehead, toward the nose.
Scaphocephaly - This type of Face Defect / Deformity occurs when the suture that runs front to back, down the middle of the top of the head fuses prematurely. As a result, the shape of the skull becomes long and narrow. The skull is long from front to back and narrow from ear to ear.
Facial Palsy - This occurs due to paralysis of the facial nerve. In this kind of Face Defect, there is loss of control over facial expressions.
Chin Deformity - In this type of Face Defect / Deformity the chin is unusually small (mirognathia) or may be unusually large (macrognathia)
Upper Jaw (Maxillary) Deformity - One of the most common type of Upper Jaw (Maxillary) Deformity is called vertical maxillary excess. In this Facial Defect, there is excess bone of the upper jaw, the face appears long, the chin is recessed and the nose large in the profile view.
Lower Jaw (Mandibular) Deformity - There are two most common mandibular deformities; mandibular excess (protrusion) and mandibular deficiency (retrusion).
Deformational Plagiocephaly - This refers to asymmetrical shape of the head from repeated pressure to the same area of the head. This kind of Craniofacial Deformity usually results from keeping the infant's head in one position for long periods of time or it also be due to torticollis which is persistent tilt of the head to one side.
Vascular Malformations - Also known as lymphangioma, anteriovenous malformations or vascular gigantism. Vascular malformations are present at birth and increase in size as the child grows.
Hemangiomas - Also unknown as port wine stain, strawberry Hemangiomas and salmon patch. These are also called birth marks and mostly are present at birth (congenital).
Hemifacial Microsomia - In this Face Defect, the soft tissues and bones of the ear, mouth and jaw areas on one side of the face are under developed.
Microtia - In this Facial Deformity, the ear on one or both sides does not grow properly and may be accompanied by atresia of the ear canal.


Effects of the special need and what it means to the applicants:

The applicants indicated that the optimal time to seek surgical treatment for your child to repair Face Defects is before one year of age since the bones are still very soft and easy to work with. Surgical intervention may be necessary at a much earlier age depending upon the severity of Craniofacial Deformity. In some cases, surgery may have to be performed in stages to obtain optimum results. The applicants understand that their child's healthcare team will comprise of several health professionals (Craniofacial Team) with different expertise to assess and monitor your child's progress as they grow up. The Craniofacial Team will educate you and your family on how to best care for your child at home, and will also outline specific problems that require immediate medical attention. The applicants also indicated that it is important to note that Craniofacial Deformities do not exist in isolation and may be accompanied by other congenital abnormalities.

Experience with the special need:
The applicants have no previous experience with Facial Deformities.

Birthmarks / Port Wine Stains
The applicants understanding of the special need:

The applicants understand that Birthmarks can include a wide range of different Special Needs. Many of these were researched by the applications and are listed below along with other considerations, including other complications which may arise because of the specific special need.


Café au lait Spot
Flat patches.
Occur anywhere on body.
Tan to light brown.
Permanent.
If child has several spots, consult doctor. Could indicate
Neurofibromatosis.


Cavernous Hemangioma
Bluish or bluish-red in color.
Lumpy mass.
Borders not visible as with other hemangiomas.
Grows fast during first 6 months – then slows.
95% disappear by 10-12 years of age.
Treatments are the same as for strawberry hemangioma.


Congenital Pigmented Nevi
Appear as hairy moles.
Can vary in color – light brown to dark/almost black.
Giant pigmented nevi are not as common as small ones.
Large nevi should be examined for malignancy.


Hemangioma
Reddish in color.
83% occur on the head and neck area.
Occur 5 times more often in females.
Some visible at birth or within 1 to 4 weeks after birth.
Can grow for up to 18 months, then start to involute.
Involution can last 3 – 10 years.
Some can be life threatening – interfere with eating, breathing, seeing, hearing, speaking, cause strain on heart.
Internal hemangiomas can be very dangerous and hard to detect – some internal lesions require no treatment and shrink in time.
If more than 3 hemangiomas are present, entire body scan should be done.


Other Considerations:
The vast majority of hemangiomas are not associated with complications. Hemangiomas may break down on the surface, called ulceration. If the ulceration is deep, significant bleeding may occur in rare occasions. Ulceration on the diaper area can be painful and problematic. If a hemangioma develops in the larynx, breathing can be compromised. A hemangioma can grow and block one of the eyes, causing an occlusion amblyopia. Very rarely, extremely large hemangiomas can cause high-output heart failure due to the amount of blood that must be pumped to excess blood vessels. Lesions adjacent to bone can also cause erosion of the bone.
The most frequent complaints about hemangiomas, however, stem from psychosocial complications: the condition can affect a person's appearance and can provoke attention and malicious reactions from others. Particular problems occur if the lip or nose is involved, as distortion can be difficult to treat surgically. The potential for psychological injury develops from school age onward. It is therefore important to consider treatment prior to school if adequate spontaneous improvement has not occurred.
Children with large segmental hemangiomas of the head and neck can be associated with a disorder called PHACES Syndrome.


Lymphatic Malformation
Excess fluid accumulates causing lymphatic vessels to enlarge.
Sponge-like masses of abnormal channels and spaces containing clear fluid.
Leakage from skin can occur – can lead to cellulitis.
If lymph vessels in face affected, face will swell.
Can occur anywhere on body but most common in head and neck area.
In mouth area, looks like frog eggs.
Can increase and grow with the individual.
Only skilled surgeon should treat.
MRI and CAT scan are used to diagnose.
Laser treatment, sclerotherapy, and surgery used to treat or remove.


Mongolian Spot
Blue or slate grey in color.
Resemble bruises.
Common in babies of races with dark skin (African/African-American, Mediterranean, Asian or Indian descent).
Can be found on buttocks, back and sometimes legs and shoulders.
No treatment needed – usually fade over time.


Port Wine Stain or Nevus Flammeus
Red or purple in color.
Can appear anywhere on body.
Most are readily visible at birth – congenital.
Can be flat or slightly raised.
Usually permanent.
Laser treatment used to help reduce color, and to improve the texture of the skin (helps to prevent nodules and pws growth which can affect lips, gums and other tissues).


Salmon Patch or Nevus Simplex
Salmon-colored.
Sometimes called “angel kiss” or “stork bite”.
Most often found on the nape of the neck.
Also appear on the forehead, upper eyelids, and around the mouth and nose.
More than 95% lighten and fade completely.


Strawberry Hemangioma
Vascular malformation.
Red, soft, raised appearance.
Size varies.
May be present at birth or first few weeks thereafter.
Will grow, but start to fade (involute), turn grey in color.
Usually disappear between ages 5-10.
Surgery might be necessary to remove – depending on size and location of lesion.
Other treatments - compression and massage, steroids, X-ray therapy, laser therapy, cryotherapy, or injection of hardening agents.


Venous Malformation
Abnormality of the large deep veins, sometimes mistaken for hemangioma.
Can be deep or superficial – deep can have no color but show a protruding mass.
Jaw, cheek, lips and tongue are most common areas affected.
Soft to the touch, color disappears and empties when the lesion is compressed.
When a child cries or is lying down the lesion expands and the vessels fill and the color becomes more intense.
Slow, steady enlargement – it will grow – some things cause more rapid growth such as serious sickness, trauma, infection, hormone changes (puberty, pregnancy, menopause).
Partial removal is not recommended, as these lesions will grow back.

Effects of the special need and what it means to the applicants:

The applicants understand that each of the different types of birthmarks may require a different form of treatment, they can be broken down into two main groups of vascular birthmarks; hemangiomas and the malformations. Malformations can consist of different types of vessels and various combinations of vessels. There is often a predominant type of vessel in a malformation. PWS consists of capillaries and small veins (venules) primarily. Venous malformations consist mainly of veins and thus have a bluish color. Lymphatic malformations consist primarily of lymphatic vessels, but often are mixed in with veins and capillaries. AVMs are arteriovenous malformations which have a pulse and have arterial connections as well as venous connections. Malformations are present at birth, but may not become obvious until later in life, when the vessels get larger. Each type of malformation is treated in a different way. AVMs must be treated surgically or by blocking off the abnormal arteries with coils, etc. PWS are treated with laser in most cases. When there is tissue overgrowth, that can be treated surgically. Venous malformations may be treated with sclerotherapy or by surgery. Lasers are usually not effective for treating them. Lymphatic malformations tend to be extremely challenging lesions, since they often recur after surgery. There are experimental treatments, but not all patients are candidates for these.
Malformations, like hemangiomas, can occur anywhere in the body. It is important to establish the correct diagnosis, since that will dictate which treatments are most appropriate.
The applicants understand that there may be surgeries required to help correct any unhealthy birthmarks. They also expect there to be emotional and social stigmas to work though as a healthy family unit as “fitting in” may be difficult for the child depending on the severity of their birthmark.

Experience with the special need:
The applicants have no previous experience with birthmarks.

Club Foot
The applicants understanding of the special need:

Club foot is a condition where one (unilateral) or both (bilateral) of an infant’s feet are rotated inward, often giving the impression of being ‘upside down’. The deformed foot may be smaller than normal, and the affected leg may be weaker and smaller than the unaffected leg. This condition occurs more frequently in boys.
Club foot does not affect other aspects of the child’s development and children are usually of normal intelligence.

Effects of the special need and what it means to the applicants:

The applicants understand that when left uncorrected, club foot can be crippling and painful. Adoptive families change the future and lives of these children.
Also, some additional therapy/surgery may be needed as the child grows, although many children do not need this.
Surgery and/or casting can correct the condition. Children with club foot sometimes use braces or special splints in conjunction with physical therapy to straighten and strengthen their affected feet. These braces may be worn at night until the child is four years of age to prevent a relapse. Once they reach the completed stage of correction, children can run and play normally and can wear regular shoes.

Experience with the special need:
The applicants have no previous experience with Club Foot.

Limb Length Differences
The applicants understanding of the special need:

The term, Limb Differences, is used in reference to the congenital (something a person is born with) absence or malformation of limbs. Some limb differences may be acquired as the result of an injury or disease that requires amputation.

Effects of the special need and what it means to the applicants:

The applicants understand that a child who has an acquired limb difference through surgical amputation is more likely to feel a profound and deeply personal sense of loss. The child must adjust to a different way of living. This takes emotional and physical adjustments. Just as different amputation levels place different demands on a person, the demands resulting from amputation or a congenital difference are different.
Also, the applicants understand that a child’s emotional reaction to limb differences may vary. Some medical literature states that children who are born with a limb difference do not feel a sense of loss. Their body is the only body they have ever known. According to this point of view, it’s rare in the early years for a child who has a congenital difference to grieve. Still, as the child grows and becomes more socially aware, there can be a sense of loss or of being physically “different” from those who have fully functional limbs. This can then lead to frustration (“Why me?”) and some of the same feelings that occur while grieving.
Infants and very young children with a lower-limb difference can better explore their world by wearing a prosthesis, as it will help that child get to a standing position more easily. Children limb differences affecting the arms often learn to compensate very early for the missing limb. With the love and support of a family, these children go on to live active, full lives.

Experience with the special need:

The applicants have no previous experience with Limb Differences.

Mild Spina Bifida
The applicants understanding of the special need:

Occulta
Often called hidden Spina Bifida, the spinal cord and the nerves are usually normal and there is no opening on the back. In this relatively harmless form of Spina Bifida, there is a small defect or gap in a few of the small bones (vertebrae) that make up the spine.
There may be no motor or sensory impairments evident at birth. Subtle, progressive neurologic deterioration often becomes evident in later childhood or adulthood.
In many instances, Spina Bifida Occulta is so mild that there is no disturbance of spinal function at all. Occulta can be diagnosed at any age.


Meningocele
The protective coatings (meninges) come through the open part of the spine like a sac that is pushed out. Cerebrospinal fluid is in the sac and there is usually no nerve damage. Individuals may suffer minor disabilities. Additional problems can develop later in life.


Myelomeningocele
This form of Spina Bifida occurs when the meninges (protective covering of the spinal cord) and spinal nerves come through the open part of the spine. This is the most serious type of Spina Bifida, which causes nerve damage and more severe disabilities.


Tethered Cord Syndrome (in relation to Spina Bifida)
The spinal cord extends from the base of the brain through the boney spine to the lower back. Soon after conception, special cells come together to form a tube that will become your baby's spinal cord. If this tube does not completely close, the spinal cord can become tethered. The cord is said to be "tethered" when it is abnormally attached within the boney spine.
If your child was born with spina bifida (open spine) then the cord could become tethered because of the scar tissue that resulted from surgically closing the spine at birth. This scar tissue causes the cord to attach abnormally.
The spinal cord can also become tethered with spina bifida occulta. This can occur without visible outward signs although usually half the children have visible symptoms.
In both cases, the tube that forms the spine failed to completely close during pregnancy.This may not be a problem until the child develops symptoms. Normally the spinal cord is able to move freely when your child bends or stretches but when it is tethered, it is stretched, especially with those movements. This abnormal stretching puts tension on the cord that can cause permanent damage to the muscles and nerves that control the legs, feet, bowel and bladder. Early detection and treatment is important to prevent this from occurring.

Effects of the special need and what it means to the applicants:

The applicants understand that having a child with spina bifida means that there will be many doctor appointments, possible surgeries, and mobility problems. There can also be different issues arising during periods of growth and that just because a child is healthy now, they may not be healthy later. Growth can cause issues with tethered cords, or even the extra weight put on the spine as the child matures can lead to the curvature of the spine, and that many children may wind up in a wheel chair (while some exhibit no major mobility issues). The applicants understand that there may be issues related to bladder control (incontinent, inability to empty bladder, etc) which may require subtle changes in life style.

Experience with the special need:

The applicants have a child with Spina Bifida and have undergone many test, doctors appointments, and care. The experience has been a good one, with no ill effects. Their child with Spina Bifida has bonded exceedingly well with the family, and continues to play and be an active participant in all family activities.

Ocular Motor Nerve Paralysis
The applications understanding of the special need:

Oculomotor nerve palsy is an eye condition resulting from damage to the third cranial nerve or a branch thereof. As the name suggests, the oculomotor nerve supplies the majority of the muscles controlling eye movements. Thus, damage to this nerve will result in the affected individual being unable to move their eye normally. In addition, the nerve also supplies the upper eyelid muscle (the Levator palpebrae superioris) and the muscles responsible for pupil constriction (termed miosis) and dilation (termed mydriasis). The limitations of eye movements resulting from the condition are generally so severe that the affected individual is unable to maintain normal alignment of their eyes when looking straight ahead, leading to strabismus and, as a consequence, double vision (diplopia).

Effects of the special need and what it means to the applicants:

The applicants understand that some of the issues arising from ocular motor nerve paralysis can be addressed though surgery (including clipping, gluing, coiling, or wrapping of the berry aneurysm by a neurosurgeon in the acute stage; eye muscle resection or recession to treat persistent and stable-angle diplopia) or corrective lenses (to correct alignment, etc), while other issues may not be correctable.
The applicants understand that there would be many medical appointments and specialists involved in the medical care of their child.

Experience with the special need:

The applicants have no previous experience with Ocular Motor Nerve Paralysis.

Visual Impairment
The applications understanding of the special need:


Strabismus (crossed eyes)
Strabismus is the condition where the eyes are misaligned. Different types of strabismus include crossed eyes (esotropia, the most common type in children), out-turned eyes (exotropia), or vertical misalignment (hyper or hypotropia). The problem may be present intermittently or constantly. Treatment options depend upon the type of strabismus, and may include glasses, prism lenses, and/or surgery.


Amblyopia (lazy eye)
Amblyopia, commonly known as lazy eye, is the eye condition noted by reduced vision not correctable by glasses or contact lenses and is not due to any eye disease. The brain, for some reason, does not fully acknowledge the images seen by the amblyopic eye. This almost always affects only one eye but may manifest with reduction of vision in both eyes. It is estimated that three percent of children under six have some form of amblyopia.


Glaucoma
Glaucoma is a disease caused by increased intraocular pressure (IOP) resulting either from a malformation or malfunction of the eye’s drainage structures. Left untreated, an elevated IOP causes irreversible damage the optic nerve and retinal fibers resulting in a progressive, permanent loss of vision. However, early detection and treatment can slow, or even halt the progression of the disease.


Cataracts
Congenital cataract is a lens opacity that is present at birth or shortly after birth.
Congenital cataracts may be sporadic, or they may be caused by chromosomal anomalies, metabolic disease (eg, galactosemia), or intrauterine infection (eg, rubella) or other maternal disease during pregnancy. Cataracts may be located in the center of the lens (nuclear), or they may involve the lens material underneath the anterior or posterior lens capsule (subcapsular or cortical). They may be unilateral or bilateral. They may not be noticed unless the red reflex is checked or unless ophthalmoscopy is done at birth. As with other cataracts, the lens opacity obscures vision. Cataracts may obscure the view of the optic disk and vessels and should always be evaluated by an ophthalmologist.
Removal of a cataract within 17 wk after birth permits the development of vision and cortical visual pathways. Cataracts are removed by aspirating them through a small incision. In many children, an intraocular lens may be implanted. Postoperative visual correction with eyeglasses, contact lenses, or both is usually required to achieve the best outcome.
After a unilateral cataract is removed, the quality of the image in the treated eye is inferior to that of the other eye (assuming the other eye is normal). Because the better eye is preferred, the brain suppresses the poorer-quality image, and amblyopia develops. Thus, effective amblyopia therapy is necessary for the treated eye to develop normal sight. Some children are unable to attain good visual acuity because of accompanying structural defects. In contrast, children with bilateral cataract removal in which image quality is similar in both eyes more frequently develop equal vision in both eyes.
Some cataracts are partial (posterior lenticonus) and opacify during the 1st decade of life. Eyes with partial cataracts will have a better visual outcome.

Reduced Vision/Low Vision

Anyone with reduced vision not corrected by spectacles or contact lenses can be considered to be visually impaired. The World Health Organization uses the following classifications of visual impairment. When the vision in the better eye with best possible glasses correction is:
20/30 to 20/60 : is considered mild vision loss, or near-normal vision
20/70 to 20/160 : is considered moderate visual impairment, or moderate low vision
Legal blindness
20/200 to 20/400 : is considered severe visual impairment, or severe low vision
20/500 to 20/1,000 : is considered profound visual impairment, or profound low vision
More Than 20/1,000 : is considered near-total visual impairment, or near total blindness
No Light Perception : is considered total visual impairment, or total blindness
There are also levels of visual impairment based on visual field loss (loss of peripheral vision).
In the United States, any person with vision that cannot be corrected to better than 20/200 in the best eye, or who has 20 degrees (diameter) or less of visual field remaining, is considered to be "legally blind" or eligible for disability classification and possible inclusion in certain government sponsored programs.

Effects of the special need and what it means to the applicants:

The applicant understand that the severity of the visual impairment will determine the amount of extra care required for their child to lead a full and active life. The applicants understand that there would be many medical appointments and specialists involved in the medical care of their child. Some of the visual impairments may not be degenerative, while others may continue to deteriorate over time. The applicants expect that a child with visual impairments will still have vision and be able to operate at a high level of independence.

Experience with the special need:

The applicants have no previous experience with Visual Impairments.

Hepatitis B
The applications understanding of the special need:

Hepatitis B is a virus transmitted through blood and other bodily fluids. Children rarely have symptoms and the virus is usually found during a routine blood test. Hepatitis B cannot be ‘caught’ through daily interaction such as hugging, coughing or eating food prepared by someone with the virus.
Hepatitis B can affect the liver, however most children do not develop the chronic form causing cirrhosis.


Challenges
Many families have found that keeping their child’s medical diagnosis private prevents others from making judgments before understanding the condition.
Your child has an infectious virus living inside of his blood. Every child in the USA is inoculated for Hepatitis B, so your child cannot infect other children within the USA. Adults within the home should undergo the Hep B. series of inoculations.

Effects of the special need and what it means to the applicants:

The applicants expect that there will be many issues to overcome with Hepatitis B. Most schools in the area will require special procedures in place for the child to ensure the safety of staff and other students. The applicants will educate the whole family (and extended family) in the care of a Hepatitis B child, including how to handle cuts, bleeding, etc. The child will have to be educated about Hepatitis B. Sporting groups and other social activities may be prone to not allow the child to participate in events. The applicants expect some emotional trauma as the child may feel they are a danger to those around them, including their family.

Experience with the special need:

The applicants have no previous experience with Hepatitis B.

Other Minor or Correctable Handicaps
The applications understanding of the special need:

The applicants are also open to other special needs which may not be explicitly covered any of the aforementioned conditions. These are special needs best described as minor or correctable handicaps. The applicants feel that with the excellent medicare provided by the local Chindren’s Hospital of Eastern Ontario there are many correctable handicaps which can be more easily addressed by Canadian specialists.
Some of the other correctable or manageable conditions the applicants are open to are thalassemia, anemia, rickets, hernia or diabetes.

Effects of the special need and what it means to the applicants:

All other correctable handicaps should be a non-issue since they are correctable. Blood related special needs (thalassemia, anemia, etc) may require ongoing monitoring and treatment.

Experience with the special need:

The applicants have no previous experience with many of the other special needs – yet feel confident that the family would be loving and accepting of their new brother or sister regardless
 

Our Timeline

First Adoption

Started the process in Jan/11
Home study approval Mar/11
DTC May 16. 2011
LID June 1, 2011
Referral July 26, 2011
Sent letter of Intent July 28, 2011
PA Aug 4 , 2011
LOA 119 Days....Nov 28, 2011
TA Dec 20, 2011
January we're Parents!

Second Adoption

Started Process Feb/13
Provincial Approval April 26/13

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