It is difficult to know where to start when you find out your child has special needs. The tasks seem overwhelming, and there is so much emotion involved. Special needs run the gamut, and there is so much information available – countless options for doctors, therapies, interventions, specialists, and support groups. Stressful questions arise: “Where do I start?” “What are the long-term implications for my child and my family?” “How do I find time for all of this?” “Does anyone understand what I’m going through?”
One parent (who asked to remain anonymous) shared her story and advice for other parents with me. “A parent’s greatest resource and starting point is the Florida Diagnostic and Learning Resources System, also commonly known by its acronym FDLRS (sounds like “Fiddlers”). They will connect you with Early Steps of Southwest Florida, the local branch that will send the resources you need right to your home to get the appropriate assessments done,” she explains. “At [my son’s] 12-month appointment, our pediatrician referred us to FDLRS, and it took about two months to get our initial evaluation (so a parent needs to call as soon as possible to get on the wait list). Our primary service coordinator did an initial overall evaluation, then got an [occupational therapist], a [physical therapist], speech pathologist, and behaviorist to come to the home for more detailed evaluations and eventual therapy, and they also sent us to a local psychologist for an ADOS (Autism Diagnostic Observation Schedule). This was the best, most helpful starting point after months of telling various doctors that I knew something was ‘up.’”
FDLRS is the starting point for parents, including assessments, evaluations, and subsequent referrals, and parents are able to access these resources regardless of their child’s age or diagnosis. The organization provides diagnostic, instructional, and technology support to families of children with special needs, as well as resources for schools in Florida. There are 19 centers that serve schools directly, and an additional six multi-disciplinary centers that provide in-depth evaluations. For more information and additional resources recommended by FDLRS, visit fdlrs.org.
FDLRS manager Theresa Bowman, advises parents that “it is okay to focus on the needs of their child rather than a diagnosis. Every child is different, and it is generally easier for families to take one step at a time rather than a giant leap. Seek the help of community agencies, friends, and family because you need to know you are not alone in your new journey.”
Many parents with children who have special needs will be referred to a specialist for interventions, therapies, and/or medical treatment. One such specialized organization in Naples is Building Blocks, owned by Charlene Westman. Her advice to parents who have a newly diagnosed child with special needs is to “take a breath. Allow yourself space to feel whatever you may be feeling, but know that you are not alone. There are parents in this (and every) community that have gone through what you are going through. Remember that life is a marathon and not a sprint. Don’t forget to attend to your own needs as well as those of other family members.”
Westman encourages families to “get informed and have a plan. Take the time to learn about the nature of your child’s disability, and seek out resources that might guide you during this early period. Find consultants to assist you. This could include psychologists, speech-language pathologists, occupational therapists, physical therapists, and social workers. Use your consultants to answer questions you may have. Don’t be afraid to question their information if you don’t understand it.”
For those parents who have recently learned their baby or toddler has special needs, early intervention can be very important, depending upon the unique need. However, it is never too late for your child to receive the interventions he or she needs. “Neural pathways in the brain, during first three years of life, are particularly flexible,” explains Westman. “This means that the brain can change more easily during these years. More importantly, changes during this period can change the trajectory of a child’s development. Be encouraged, though – it’s never too late to change the brain. We can all continue to grow and develop new neural pathways throughout our lifespan.”
Finding Support
A supportive community is essential for parents of special needs children. “Whenever I have a parent who has recently found out they have a child with special needs, or we together suspect their child may have special needs, I typically refer them to a specialist,” says Dr. Debra Shepard, a pediatrician at Lighthouse Pediatrics in Naples. “There are so many unique needs; a specialist will be able to determine the correct course of action and any interventions or therapies needed. Specialists are often able to direct families to support groups specific to the child’s needs,” she continues. “I often seek to connect parents who have recently found out their child has a special need with another parent in my practice who has walked a similar road. I find it helps greatly to have a personal connection right away.”
Local parent Tianna Fisher organizes one such support group – the Naples FL Parents of Special Needs Children Facebook group, which provides support and networking. The group plans regular events and also shares information on local events and activities specific to the special needs community. “I want people to know there is a supportive bunch of parents who are here to share resources and help each other,” Fisher says.
“Now that my daughter is five, we’ve been through a lot of different courses of treatment – trial and error. There is a lot of advice out there, and a lot of support. Sometimes it can feel isolating. Don’t give up.”
Fisher also stresses the importance of early intervention to those with recent diagnoses. “A diagnosis is very helpful in getting you the right help and services, and early intervention can open doors for your child, as well as expand your own knowledge as a parent. A diagnosis, however, does not change the things that you love about your child. Special needs can vary in degrees – a child may have a slight language delay, or a child may have severe impairment in many areas. The best thing a parent can do is find a support network” such as the Facebook group organized by Fisher. “We are here,” Fisher says. “We love our children, and we get it. Never stop learning from your child. I’m so thankful for this community.”
Encouragement from Other Parents
There are so many sources of encouragement, but the words from parents who have been there – who have gone through the diagnosis process, and have walked this challenging road of parenting – are especially poignant. Here are what six local parents have to say to others just beginning the process:
• “It is never easy to find out that your child doesn’t fit society’s
‘normal’ standards. It doesn’t matter how severe or mild the special
needs are, it’s still hard. Every day is a challenge, and I just want
other parents of special needs kids to know they are NOT alone,
and it’s okay to feel overwhelmed. I’m overwhelmed, too. I struggle,
too. Take some time for yourself because caring for children is hard
enough, but it’s especially hard when your child needs more than
you can sometimes handle.”
• “When you find out your child has special needs, realize and
understand that it’s a good thing. Every child is unique – every child
has unique abilities and needs. Having a child diagnosed as having
special needs is a blessing – that child is a blessing.”
• “You’re not alone. I was devastated when I found out my
son had special needs. I turned to support groups for help, and it
made me realize I am not alone.”
• “My son will be 18 years old in January. We found out when
he was three years old that he has special needs, and things have
changed a lot since then. I always tell other parents like me that
this is still the same child you had before. This is not the end of the
world, even though you might feel like it. Many other parents are
in the same situation. Take some time to breathe, and love on your
family before you go crazy with research. Don’t be over-protective
with your child; be there, and be involved. You have to be your
child’s number one advocate. If you don’t push for what your child
needs, no one else will.”
• “As parents, our hearts are so full of love for our child the
moment we see them. When you see your child suffer, it can cause
your heart to ache because it is growing and being stretched by that
love. Whether your little one arrives with his or her own suffering
or acquires it later matters very little. Your suffering child will cause
your heart to grow – just like each of your other children, perhaps
even more. Special needs often set you apart, a little or a lot. Having
at least one friend who walks with you through similar challenges
can be so helpful. But, if you don’t have one, try to strengthen
your family bonds to be there for each other through this always
unpredictable journey that is parenthood. And remember that you
are the expert on your child.”
No matter what happens in life, it is important for parents to know that they are not alone. One great way to learn from others and make connections with like-minded parents is to seek out events designed for parents of children with special needs. FDLRS is offering a free conference on Nov. 5 from 8:30 a.m. to 1:15 p.m. The conference is open to any parent who has a child with a special need, regardless of the need or age.
For additional information, contact Jessica Braun at 239-337- 8539 or visit apps.collierschools.com/events/Pages/Guest/Event. aspx?eventid=19.