Support and Resources for Parenting A Child with Special Needs

By Andrea McAfee

When I was 21 weeks pregnant, a high-level ultrasound confirmed that my youngest daughter had spina bifida.  I was suddenly shoved into a world I knew nothing about – parenting a special needs child. My little girl is six years old now.  Thriving in every way thanks to a fantastic team of doctors, therapists, teachers and other providers who have kept her healthy and lovingly supported. 

I have learned a lot over the past six years.  I listen to my gut and advocate fiercely for my daughter’s care and education.  I can battle insurance companies and do claims management like it’s my second job (… which it kind of is).  Perhaps most importantly, I have started to prioritize self-care as an investment for our family.

Whether you just received a prenatal diagnosis, or a pediatrician has identified a developmental delay in your child, I hope that you find the information below helpful.  It can be overwhelming to figure out your next steps. What therapies do you choose? How will you pay for services? How does your child’s educational environment change?  

If your child is suspected of having a developmental delay or has an identified disability, the State of Pennsylvania provides services and support for families through their Early Intervention (EI) program.  These services are available from birth to age 5 (after which your child would transfer into School Aged services and continue to receive support). EI services include parent education and developmental therapies that support your child’s development.  Services happen in the home, child care centers, Head Start programs or preschools – whatever setting that is most comfortable for your family. It is important to know that these services are provided at no cost to your family.  There are no insurance claims to complete.  This is a service provided by the state.

The first step in the EI process is an initial screening.  This is a quick phone call that helps determine what kind of evaluation your child will undergo so that the team can get a good understanding of your child’s needs.  You will be asked demographic information about your child and family, as well as some basic questions about your child’s development. This is also where you can share your child’s diagnosis if you already have this information from your pediatrician. [READ MORE]

 

Once your evaluation is complete, the early intervention team will work with you to create a written plan.  If your child is aged 3 or younger, this plan is called an Individualized Family Service Plan (IFSP). If your child is preschool aged or older, this plan is called an Individual Education Program (IEP). [READ MORE]

 

So now you have a better understanding of your child’s needs and those needs may be really complex.  How are you going to pay for all of these services?  As previously mentioned, early intervention services are provided to all Pennsylvania families at no cost.  However, private therapies, as well as medical care can add up quickly. [READ MORE]

 

Your child has a huge team supporting them – medical professionals, therapists, as well as teachers and caregivers.  For a team to function, everyone has to be on the same page. As a parent, you are right in the center of this team facilitating communication.  [READ MORE]

 

While meetings and open discussions are fantastic, documentation rules the special needs world.  Through Early Intervention, you get an IFSP or IEP. As your child moves into a formal educational setting, your plan will evolve and become more complex. [READ MORE]

 

You’re going to feel pretty tired after fighting for this unique kid that you love to pieces.  It’s really important that you find your tribe. In any community, there are hundreds of children with special needs, yet most special needs parents will tell you that they feel horribly isolated and overwhelmed.  [READ MORE]

 

Additional Resources