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

Guardian Advocacy.. What Parents Need  To Know

Guardian Advocacy.. What Parents Need To Know

With graduation season upon us, parents are face to face with the reality their child is no longer a baby, but a bonafide adult. It is these facts which make parents aware of the responsibilities that come with being an adult. Being an adult comes with its challenges, however becoming an adult who has special needs is a challenge in itself.  As parents make the best decision for their children, how does one determine what legal aspects to consider?  Legal guardianship comes up many times, specifically in the areas of medical matters.  So, let’s talk Guardian Advocacy and what does that mean for yourself and your child.

 

Guardian Advocacy is a process for families, caregivers, and friends of individuals with an intellectual disability to obtain a guardianship without having to have an examining committee appointed to determine that the person is incompetent.   A Guardian Advocate needs to be selected when a person with a developmental disability turns he or she turns 18.   Upon becoming any adult, the parent no longer has the legal ability to make decisions for their child.   To obtain guardian advocacy over an individual, the person with an intellectual disability must have a disorder or syndrome that falls under certain criteria.

 

If the individual has an Intelligent Quotient of below 70,  Cerebral Palsy, Autism, Spina Bifida, Prader-Willi Syndrome, Down Syndrome, Phelan- McDermid Syndrome, which manifests before the age of 18. Not everyone with an intellectual disability needs a legal guardian. One is necessary if the person is not able to make the necessary decisions relating to daily life activities (where to live, financial decisions, educational decisions, etc.). If you fear your child may not be able to make sound decisions regarding their life, Guardian Advocacy may be the way to go and is the least restrictive regarding what is best for the individual in the future.

 

Background Check Requirements and who may not serve as Guardian Advocate:

 

A person who may not be appointed as a Guardian Advocate includes anyone who has been convicted of a felony; suffers from any incapacity or illness that makes them incapable of discharging duties of a Guardian Advocate, or is otherwise unsuitable to perform the functions of a Guardian Advocate; has been judicially determined to have committed abuse, abandonment, or neglect of a child.

 

As an advocate, and Social Worker, I understand making the best decision for your loved one is not easy, and I applaud anyone who takes into consideration their loved one’s future.

 

If you or your loved one have any more questions or want more clarification, please reach out to attorney Laurie Ohall at www.Ohalllaw.com (she does free workshops to help you figure out how you can file for guardian advocacy over your child on your own and without having to hire an attorney) and also check out the following links  to the guardian advocacy statutes – http://www.leg.state.fl.us/statutes/index.cfm?App_mode=Display_Statute&Search_String=&URL=0300-0399/0393/Sections/0393.12.html.  If you are in Hillsborough County, here is the link to the Thirteenth Judicial Circuit – http://www.fljud13.org/CourtPrograms/ElderJusticeCenter/Forms.aspx.

Spring Break is gone,but Summer is around the Corner.

Spring Break is gone,but Summer is around the Corner.

  What did you do for Spring Break? Nothing fun, fresh or exciting well, I can honestly say, my spring break was better than yours and let me tell you why.  I volunteered at Autism Spectrum The camp hosted by The South Pinellas Autism Project. The Day camp location is at a local YMCA in the city of Saint Petersburg, Florida. While other kids are attending the YMCA children, who are on the Spectrum as well as have other neuro-developmental challenges as well. It is a camp within a camp.

 

As a social worker who works with Intellectually Disabled and Autistic children, one of my many challenges is finding resources for parents especially when it comes to activities for their children during break time like for example, is the camp equipped to handle my child and all of his needs?  Other concerns for example, what if my kid has a maladaptive episode?  Can my child bring his IPAD?

Matt Wiseman is Executive Director for the South Pinellas Autism Project, which launched in April 2016. Matt is a father of three boys, the youngest of whom is on the Autism Spectrum.

The camp accepts kids from as young as five years old up until the age of 13 years old.  At the camp, kids have the ability to join Spring Break with staff who understands their unique needs. At the camp, the children have the ability to be in quiet areas with the electronic devices as well as be social with other kids. The camp comes equipped with staff that is specifically trained to handle maladaptive behaviors. According to one of the South Pinellas Autism Project Chairperson, Rob Capuano, reports, “Our goal is to have a safe and fun camp, that accommodates kids who have challenging behavior and development issues,” says SPAP Chair Rob Capuano. “At the same time, we want to encourage them to build on positive behaviors and academic strengths.” A camp is a safe place for children who are on the Spectrum.

kids playing tug-a -war

The children have the ability to play with their own electronics. The children stay busy with a detailed scheduled created by staff. Activities include playing the Xbox with games named Fruit Ninja and Just Dance. The children have an opportunity play outside in the play ground twice a day. Children have snack time as well as lunch. These meals are not included and must be provided by parent/ guardians.

The South Pinellas Autism Project past camps have been in Winter Camp in 2016 and they will also create a Summer Camp as well in summer of 2017. The camp is located on the Greater St. Pete YMCA’s Central Campus, which is just off I-275 and easily accessible from all of South Pinellas and Eastern parts of Clearwater and Safety Harbor. Central Campus is at 5175 45th St N in St Petersburg, FL 33714. Hours are weekdays 8:30 am to 5:30 pm. The cost is $150 a week, and there is tuition assistance available. The first day of camp is May 30th, and it will run about 10 weeks until early August. 

kid on swing

If one is interested in volunteering or gaining more information about The South Pinellas Autism project can be found https://www.facebook.com/SouthPinellasAutism/

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.