Tips for Parents of Special Need Children

Tips for Parents of Special Need Children

This August, many children with Special Needs will be walking down the hall for the first time. For parents of these children, this can be overwhelming as well as exciting. Here are three steps to help parents of Special Need Children prepare for the first day of school.

School  Visit

school hallway

It can be overwhelming starting a new school. If you are the parent of a child with special needs, this can cause anxiety not only for you but the child as well.  Scheduling a visit at the school is an excellent idea. By planning a visit during the summer helps the child to see the school when it is less crowded. It is important for the child to walk down the hallways and class room to get a familiarity of the place.  This tour should include the cafeteria, the library, principal’s office, the nurse’s office as well as the classroom where the student will be if that is available at the time. If the child is switching classes, this schedule should be followed in order as this will be the child routine. Also, knowing where the closest bathroom is also essential.

Picture Schedules
If your child is a visual learner, creating a picture schedule may work.  If possible, two weeks before school starts, go to the school and take pictures of the school, school buses,  and facility. Arrange the pictures in subsequent events. This picture schedule will help the child with an understanding of their schedule in pictures.  This picture schedule can be used while in school.  For example, when to change classes, or when they should go to the bathroom.  The picture should prompt the question “After we do this,then we do this. ”

Supportive Staff.
No one knows children better than their parents. It is important the first week of school to get to know the teachers and supports who will be teaching your child. If your child has an Individual  Education Plan ( IEP) or 504 plan, ensure all parties have a copy of this so they can plan how to serve your child best.  The lines of communication for both sides should be open.  If your child has an aide in the class or a paraprofessional get to know them as well. If your child will need additional resources such as Speech, Occupational Therapy and or Behavioral Services, Speak up. Advocating for your children’s needs is essential to a successful school year.

Be involved

father and daughter doing homework

Parent Teacher Association ( PTA), the school bake sales, Booster Club, whatever activity there is which requires a parent interaction and participation, if you can be active in it, then do it. It shows you support your child’s education. This behavior indicates that this parent is active in their child’s life as well as education.  These activities can be used as social interaction with other parent’s whose child may have similar diagnose, as well as be a resource for additional information which parent who does not participate may not be aware.  Parents who are involved in their child’s education may also get more support. As the slogan goes, ” Membership does have its benefits.”

As a Social Worker who works with the Autistic Community, I often courage parents as well as teachers to encourage their children to be active in school. In school inclusion is imperative to all children and help build self – esteem, friendships and as well as confidence.

As the school year starts, it’s wise to have a plan when it comes to children and education,  If you follow these three steps, your child will be off to a good start. Here is to making this school year the best year.

 

Houston, We  Have A Problem

Houston, We Have A Problem

In this world, creeps, jerks, and butt heads are everywhere, and in the world of individuals with disabilities, idiots are plentiful. It is a fact that persons with disabilities, children and the elderly are more likely to be abused, neglected and exploited. We live in an age where parents are fearful to send their “precious cargo” to school for fear someone will hurt them, and if you are a parent with a child who is non-verbal this fear multiplies. I know parents who do head to toe body checks on their kids before and after a trip to daycare. Obsessive?  Depends on who you ask. The fact that abuse and neglect can happen to their children is a paralyzing fear that settles over parents and caregivers of children with special needs.

For those parents who have made a choice to put their kids in a group home or a residential facility may feel somewhat relieved due to the amount staff a home or facility may have in these places. The fact that the Abuse Hotline phone number is located in multiple locations within the home does nothing for clients if staff cannot articulate to the clients what abuse and neglect are. To them, the Abuse Hotline number might as just be a picture on the wall.

sad kid

What is abuse? According to Webster Dictionary, Abuse is defined by a corrupt practice or custom the buying of votes and other election abuses
2:  improper or excessive use or treatment:  misuse drug abuse
3:  language that condemns or usually vilifies unjustly, intemperately, and angrily verbal abuse a term of abuse
4:  physical maltreatment child abuse sexual abuse
Abuse includes:
Financial (not paying clients’ bills when supposed to, using the money for things that have nothing to do with the client); also sexual, physical, and emotional.

 

People with disabilities are at risk because: 

abused child

They depend on others for basic needs
They are taught to cooperate with ” people in charge” like staff members.
They often live in group settings and cannot choose their roommates or caregivers.

People with disabilities may not report abuse because:
They feel guilty
Do not want to get their abuser in trouble
Do not know they are being abused

Signs of Abuse:
*Bruises, cuts, burns, grip marks
*Any injury that is unusual, unexplained or the explanation does not make sense
*Genital pain, or itching or sexually transmitted diseases.
*Not having enough money in the bank for bills, after monthly deposits, items may be disconnected such as water or power, after they were supposed to be paid, (this applies to individuals who live on their own  and have a Supported Living Coach who helps them pay bills)
*Not enough food in the refrigerator or pantry (this generally for individuals who live on their own and have a Supported Living Coach who helps them pay bills) or clients buying staff items with their own money e.g. groceries, fast-food or giving their money to staff.

As a Social Worker who works for this vulnerable population exclusively, I see clients on a monthly basis. I continue to educate clients on what abuse looks like in ways they can understand asking, ” Who would you tell If I hit you?” I always ask them if I can have some money, and most of the time, they say, “No” In the event in which one of my clients forget, I then re- educate them on the importance of not giving their money to people. I follow-up with a phone call to their circle of supports and explain my finding and re-educate the circle of supports on other ways we as a collective can educate the people we serve. It is important to me as advocate, dedicated educator and supporter of the Special Needs community; our clients are aware and educated on Abuse, Neglect, and Exploitation.

For more information about this topic please go tohttp://flfcic.fmhi.usf.edu/

Havercamp, S.M. & Veguilla, M. ( 2009). Abuse, Neglect, and Exploitation: How to Protect  Yourself

Summer Camp for Children with Special Needs

Summer Camp for Children with Special Needs

The Summer is right around the corner.  Any ideas on what to do with the little ones this Summer? What about Summer Camp. Finding the right match for your child can be a daunting task, but here are some import things to consider when looking for a camp for the Summer. There are a plethora of options when it comes to Summer Camp options, but how do parents choose what works? Here are some things to consider when looking for a camp.
Objective
What experiences would you like your child to get while attending camp?  Will your child learn to increase his or her social skills? Does the camp have a therapeutic approach such as therapeutic curriculum, e.g.,( Equestrian or Pet therapy)?What about academic? What will the camp do for your child and how do these objectives help with the overall support of the child?
 If your child will be attending a camp which is inclusive based, what are the protocols for when a child has a maladaptive behavior? Are there policies and procedures in place for such things?  Will Specialty service such as Occupational and Speech Therapist be able to come to camp to render services?
Structure

The structure of the camp is critical when considering camp. What type of activities will the child be engaged in while at camp? Are the camp activities sensory based? How will the camp incorporate social play? Will there be times dedicated to alone time in quiet areas? If so is the child allowed to bring his or her items such as  IPAD or Tablets,  and will this be incorporated into the schedule?

kids playing tug-a -war

Logistics
Along with structure, another question to consider is location. How far is the camp from the nearest relative in case of emergency? Does the camp have transportation?  Will there be field trips involved?  Will a parent have to pay the full rate for a kid who only goes half days or are there discounts and financial benefits in place for this?
Medical Issues
Does the camp have a nurse on hand or are staff trained to take care of things such as seizures? Is the camp equipped to handle your child diet restrictions?

nurse

 Lots to consider when picking out a camp. I hope these questions help organize important things to consider when choosing a camp. I hope these tips were helpful.
Can Early Intervention help your child?

Can Early Intervention help your child?

Times have changed since I was a young child. I remember being dropped off at grandmother’s house and sitting and watching Black and White movies of The Three Stooges on a floor model television in the living room. I remember watching the Price is Right and clapping my hands because I saw the audience do this on TV. Now we have which help children with eye- hand coordination, Leap Frog which helps children read .

As a Social Worker, I am always concerned with the growth and development of my children. I often, compare my kids’ growth to the milestone chart given by the pediatrician to see if my client is developing according to the benchmarks. The questions are, what happens if children are below where they need to be and are there anything parents can do to help? What is Early Intervention? How does it help families? And what happens if a child has a diagnosis as being developmentally delayed at a young age?

kid reading

Early Intervention is an organization which helps children who may have developmental delays. Early Intervention helps infants and toddlers get intervention and services they need to learn within their first three years of life. These skills include cognitive, physical, communication, and self- help. According to Early Intervention Services, they will tailor services to meet the child’s needs which might include the use of technology, Medical Services, Nutrition Services, Occupational and Physical Therapy Services. Early Intervention also helps parents understand the needs of the child as it is not easy raising a child with special needs parents are offered support to help with this challenging concept.

 

Early Intervention Services are generally at the request of parents, and sometimes a referral is made by a Developmental Pediatrician. The assessment service is free of charge. The Family Service Coordinator will explain the processes and ask the parent/ guardian for permission to assess the child. According to Parent Center Hub, “The evaluation group will be made up of qualified people who have different areas of training and experience. Together, they know about children’s speech and language skills, physical abilities, hearing and vision, and other critical areas of development. They know how to work with the kids, even very young ones, to discover if a child has a problem or is developing within normal ranges. Group members may evaluate your child together or individually. As part of the evaluation, the team will observe your child, ask your child to do things, talk to you and your child, and use other methods to gather information. These procedures will help the team find out how your child functions in the five areas of development. ”

When the child has a diagnosis by the child’s pediatrician, or a certified Infant and Toddler Developmental Specialist, the parents should do their research about the child’s’ diagnosis. Getting as much information about the diagnosis which includes how this diagnosis will affect their child future and what other milestones they should be aware of for the child.
Assistive Technology is helpful. There many Smartphone applications as well as any items on the I pad application which help with the education of the child with delays. There is also adaptive equipment from agencies such as Fun and Functional and Zyrobotics which used technology to create switches to turn on computers or sensory items for kids who need sensory stimulation. Technology has come up with ways where a child can use eye gazing to answer the question a computer app has asked them.

It is important for parents to know they are not alone. There are communities which help families understand the child’s diagnosis. There support groups at local and community hospitals, as well meet- up support groups for the parent of children with special needs. It is also helpful for parents to know what is being discussed from the local, state and nationally regarding their child’s diagnosis. Parents and caregivers may also benefit from joining different national associations. Children often benefit from going to support groups with their peers. Parent Support groups become impromptu play dates where children can be with similar children who look and act similar to them. National Associations such as Autism Speaks, National Society of Down Syndrome and much more have resources available on their websites which include information sheets, up to date facts and what is happening on the local and national level.
All in all, Children who are given a diagnosis with a developmental delay can receive early intervention services. The referral process in simple and can lead to other doors such as support groups for parents and caregivers in the local community as well as the national level. Support groups help parents communicate with their peers to express any concerns about being a parent of a special need child.

Spring Fling

Spring Fling

I recently attended a Father- Daughter/ Mother- Son Dance presented by Amazing Kidz Therapy, PLLC.  The fundraiser event was to raise money for The Autism Speaks Walk. The children that were in attendance ranged from grades K- 5. The children dressed in their Sunday best dancing to famous artists such as Bruno Mars and Justin Timberlake. The dance floor was rarely empty; at some points more adults were dancing on the floor then the children.

 

Amazing Kidz Therapy provides premier pediatric occupational therapy services to children from birth to the age of 18. Quality care and customer experience are the cornerstones of this agency.  Amazing Kidz Therapy believes every child is unique and deserves services that reflect the same to maximize their independence within all of their natural settings, including home, school, and play.

Amazing Kidz Therapy believes therapy is not just performed within the therapy clinic, but are continues throughout a child’s home and school environments through collaboration with all involved in the child’s care.  Amazing Kidz Therapy provides at home resources to parents and caregivers to assist in continuing progress throughout the week. There programs and specialties include but not limited to:

Handwriting Support

Handwriting Groups

30-minute handwriting groups are tailored to meet the needs of children that are having difficulty with the physical act of writing.

Amazing Kidz Therapy utilizes the Handwriting Without Tears® approach, which includes first learning letter formation with a multi-sensory approach and then progressing to putting pencil to paper.  A systematic approach for learning letter formation is utilized to solidify rudimentary skills and then building upon those for more complex writing strokes.

girl in a tutu dancing

Fine Motor Coordination and Strengthening

Fine motor skills are required to perform activities such as handwriting, eating, playing and manipulating smaller objects, self-care skills, and skills needed for success in academic setting.

 

Self -Care, Life and Social Skills

Activities of daily living references the everyday tasks that one participates into care for themselves: dressing, bathing, hygiene, eating, grooming, toileting, etc.  For some children, learning and developing these skills can be hard and daunting tasks. Occupational Therapy works towards breaking down the steps and skills required for each age appropriate task to assist in increase the child’s independence and build their confidence and much more.

 

About the Owner: Kathleen Pici, OTR/L, and CAS

Kathleen attended Utica College of Syracuse University where she received her Bachelor’s of Science degree in Occupational Therapy in 2002. She is Certified Autism Specialist through the International Board of Credentialing and Continuing Standards.  Her experience spans evaluating and treating a variety of populations including (but not limited to) Autism and ASD, Sensory Processing Disorders, Behavioral Disturbances, Down Syndrome, Selective Mutism, Fetal Alcohol Syndrome, ODD, ADHD, Spina Bifida, Cerebral Palsy, Torticollis and congenital neurogenic motor disturbances.  Her evaluations and treatments are centered on the whole child to ensure that all needs are addressed to allow the child to maximize their development and thrive within their multitude of environments.

http://www.amazingkidztherapy.com/spring-fling—charity-event.

you can find  Amazing Kidz here https://www.amazingkidztherapy.com/ and call follow them here https://www.facebook.com/amazingkidztherapy/

Are You Afraid of Your Child  Becoming An Adult?

Are You Afraid of Your Child Becoming An Adult?

 

“So what happens when my child turns 18?” “Can you explain guardianship?” As a Social Worker who works primarily with the Intellectual Disabled and Autistic population, I get asked this question on a daily basis.
Here is the dilemma, when an individual who is Intellectual Disabled reaches the age of 18, in the eyes of the law, they are considered an adult.  The word “adult” is a very scary word for parents who have children with Special Needs. Fear settles, and panic rears its ugly head because now parents realize their child can make legal decisions regarding their life. As a result, the role of natural guardians who are usually the parents, could be lost if legal steps are not taken ahead of the 18th birthday.
Why so much planning? Because the parent must realize that in order to assist their adult child with most of the decision making, which include but is not limited to medical, educational, as well financial matters, the law must determine how this will be achieved.
Whether your child has a diagnosis of Profound and Severe to High Functioning Autism, there is always the question of  “What if?”

I will not get tired of saying it over and over, if a parent is considering guardianship, it is best to start early and get educated as much as possible.

In the Tampa Bay area, there is an impressive advocacy group. This group meets periodically. Under the banner of Just Autism No Panic Right, Yadira Calderon has created a forum, a safe place where parents, as well as professionals, come together to discuss pressing issues regarding their Special Need Children. Most importantly, it is a great opportunity to network.

On March 29, the topic discussed was Guardianship and related legal matters. Some  questions asked were, ” Guardianship, do I need it and why?” Who can be a guardian and what is the cost? These, as well as other perplexing questions, were addressed at this forum.  The panelists were parents who have been through the guardianship process as well Attorneys who specialize in guardianship law.
Here is the information in a nutshell.
In the book Planning Ahead, the diagnosis of a disability does not automatically mean that a person needs formal decision-making assistance. Supporting an individual with disabilities and encouraging them to make their own decisions is always encouraged.There are levels to this. What are my options?Guardianship according to the law is defined as being legally responsible for the care of someone who is unable to manage their affairs.Full Guardianship removes all rights relating to both person and property and requires that first be an adjudication of the individual as utterly incapable of handling any personal decisions, money or property.  This act of guardianship takes away the person’s rights.   Full  Guardianship dictates where they can live, to marry, to be employed  This process is can be very expensive, may be considered as a last option as this is the most restrictive and can take a significant amount of time.

Guardian Advocacy
For those individuals who demonstrate they can perform some decision- making tasks then Guardian Advocate maybe a better option. The Guardian advocate is a process for families to obtain guardianship without deeming the individual incompetent. Guardian Advocate is a least restrictive alternative and less expensive as well.There are other legal options such as Power of Attorney, and Representative Payee which are even less restrictive, however, all decisions should be looked at from all angles and should have a person- centered approach.If you are a parent or a professional and need more information regarding guardianship, I have provided links and resources to help. Please ask questions, get educated regarding legal matters and your child.