This tranining has been created based on the New start training from Early Steps (State Early Intervention Program) to educate providers of children with special needs and community about respect and how is the life of family of a child or children with special needs.
Disfrutando de la vida y el amor con síndrome de Down
Training for providers of children with special needs
1. Analysis of some "Special points between parents and providers " New Star Training for Families By Eliana Tardio FRS
2. IDEA, Part C requires that “to the maximum extent appropriate.. services must be provided in natural environments, including home and community settings in which children without disabilities participate” Receiving intervention services and supports in natural learning environments means: Your child will have opportunities for the same types of experiences as children without disabilities. Your family is encouraged and helped in identifying your child’s strengths and talents. Your family is assisted in building relationships that do not focus on your child’s disability or difference. That sense of isolation, which many families feel at one point or another, will be decreased by connecting to those natural supports like family, friends and the community. NATURAL ENVIRONMENTS
3. This is very important information about the services we should be providing to our families. Are we providing these services? Are we giving a “plus” to these families helping them cope with that sense of isolation?
4. “I would say that the first impression that you have when having a child with special needs is the frustration about how this child will fit in a world that is still his world, but conformed with people who has other interests. With time and devotion, you realize your child has the same rights as any other human being and deserves respect. Respect is what parents expect from others when referring about their child; Respect means “Polite expressions of consideration of deference”, that’s how I became a fan of respect. Are you a fan of respect?” Eliana Tardio
5. When you become the parent of a child with special needs it feels like a deeply injection of the meaning of respect in life. Somehow. Before having this child, probably never stopped to think about the meaning of respect and is not that you have been disrespectful with others, is just probably you never before needed to feel those “polite expressions of consideration” to feel that everything will be right. Are you willing to make a difference in someone’s else life by bringing to their homes “polite expressions of consideration” for the most important part of their lives; their child?
6. Many people think you cannot be natural when you face a situation with a family with a child with severe disabilities, people get frustrated and intimidated with the disabilities and can hardly look behind to realize there is a child, as wonderful and special as any other child, but going further: How can you look behind?
7. - Be positive, never start a conversation by asking what a child cannot do, we all know what a child should be doing a certain range of age, let’s look for the things that the child is doing, and help the families find a reason to celebrate and feel comfortable - Don’t make a percentage of delay , give a percentage of advance, there is a big difference between telling a parent : The percentage of delay is 25% compared to a regular child of his age, than “The percentage of your child’s communication skills, is 75% and will get better with the proper services and your support” Focus on the child; keep always in mind that “a child is a child first and always!”
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9. More is not always better, you don’t need to provide more information than needed or requested by families. Families of children with special needs growth with their children and it is the natural way for them to learn, adjust and have goals set during their lives.
10. Never underestimate the power of love, let parents be creative and follow their instinct, this is a natural process that helps families empower themselves and be an important part of the evolution of their child. We all know you are certified and can guide us through the learning experience, but parents are specialists in the life of our children.Focus on the child; keep always in mind that “a child is a child first and always!”
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12. The vocation that brought you to become a professional serving families of children with special needs, gives you compassion and respect for them. Words like “retarded”, sound worse in your mouth than in anyone’s else. Please evolve with in time and stop using terms as “mentally retarded”. Keep an eye on your words and even some terms are medically proper, “sense common” is a great friend when trying to communicate a parent about their child’s condition.Focus on the child; keep always in mind that “a child is a child first and always!”
15. The FSP can be modified and updated any time as needed. CONVENIENCE is a very important one to keep in mind when serving families. We all know our schedules are not easy to adjust, but we have to keep in mind how important is to be willing to serve. When we think about our jobs we know there are transitions, evaluations, IFSP updates, phone calls, new referrals and much, much more, but : Have you ever think about the schedule of a family with a child with special needs? About Family Support Plan (FSP)
16. Brandon is a typical child who happened to be born WITH Down syndrome, Down syndrome is the most typical intellectual disability. 1 every 800 children are born with Down Syndrome. The high incidence doesn't make feel Trisha (Brandon's mom) better, actually it doesn’t make life easier for anyone. In the heart of a parent their child has Down syndrome and even is the most common “intellectual disability” it doesn’t mean you can get a book and learn all that you need. Result of the Down syndrome, Brandon has problems with feeding, sleeping and since he was born three months ago, mom has been at more than 10 medical appointments to check up Brandon's medical condition. Trisha used to have a full job, now in response of Brandon’s needs, Trisha is not able anymore to hold a job, at least not for now or in the next months. This family not only have a new child, they also have to adjust their life to a child with special needs and maybe start living with the half of income they use to, before having a child. At the age of three months Brandon has several therapies, he receives occupational, speech and physical at a private clinic, mom travels twice a week to therapies for periods of 45 or even 90 minutes. It means two days of her week she will be packing, traveling and learning how to handle this new responsibility in her life. Between all this, she receives the visit of our ITDS once a week and has to follow up with specialists for the next 6 months. Life has been exhausting the last 9 months, even that, mom is feeling better and has finally recognized she has a wonderful child who thanks all her efforts, have started showing her the miracle of love. She’s happy and worthy; sometimes she’s still asking herself why? But life is good and she’s ready to keep going. The phone rings, is Early Steps Service coordinator regarding the IFSP meeting. Mom is happy and excited about checking up Brandon’s progress and will do whatever is needed to have you come and work with Brandon and her. This parent is in a process of acceptance and understanding and deserves Convenience and Respect. Are we willing to provide convenience?
17. The opposite of Trisha’s example could be a family with poor parenting skills who has a child with much less special needs. Family looks demanding and intolerant. We don’t know much about this family Anyway, we know enough, they have the same rights and we have the same responsibilities. “Every child has a name” A different circumstance
18. Sometimes as busy professional we are, we run out of time, have so many responsibilities and feel we have the right to take every child as a folder. Every child has a name, and every name has been chosen with love and hope. Being compassionate don’t make “work” harder, it makes it easier, because "give" is the opportunity to learn and contribute for a better live to a new life. From the perspective of a parent, three years of early intervention, run fast and we would like to be able to extend this time and get more from our children, when time goes on, we start understanding there are things that will never change, that therapies don’t fix our child, but get the best of them. The reason how this hard situation turns into something big is because many parents learn to overlook over the disability and recognize the big miracle, that is no more than “real love” Compassion is an amazing feeling that can connect you with others without the need of walking in their shoes. Feed it in your hearts! Your work can make such a difference in the life of a child with special needs. Thanks! THE GOAL OF THIS PRESENTATION IS TO SHOW YOU THE OTHER SIDE OF THE COIN