ADVOCATING FOR YOUR CHILD: BIRTH, PRESCHOOL, AND BEYOND
Remember that first moment you looked down at your baby’s tiny face, and how you instantly fell in love? That bond between parent and child is one of the strongest ones in the universe. That intense connection is what guides you in every decision you make for your child as they grow. The decisions can be about simple things – such as what diapers you use, or making sure they are bundled up against the cold; Or they can be decisions about more complicated things – such as choosing just the right babysitter or daycare for them, where you can be assured that they are safe and well-cared for.
As your child grows, there are always new and often miraculous changes that they go through. Perhaps it’s that first smile, that makes your heart melt. Or maybe it’s the sound of their first giggle that just makes your heart fill with so much happiness that you feel like it will explode! Their first steps fill you with wonder, awe, and also fear. You want to be right there to catch them if they fall. That is a feeling that will never change, no matter how old they get!
But what happens when those magical moments don’t happen when they should?
No one ever prepares you for that moment when you discover that something is not going exactly the way it should be. Perhaps it’s a physical difficulty, a medical diagnosis, a feeding difficulty, a speech and language delay, a learning disability, etc. It’s overwhelming and stressful, and often you don’t know who to turn to with the thousands of questions that are going through your mind.
There’s no doubt that you will get a ton of advice from family members and friends, who all mean well, but most of them have not experienced what you are going through. They may tell you that you’re “over-reacting”, or say “they’ll outgrow it.” Their words, while well-intentioned, are often not what you really need to hear. Unfortunately, you may also come across doctors – even your child’s pediatrician- who dismiss your concerns. But here’s the key: You know your child better than anyone! YOU are the one who has that bond, that intense connection.
You need to trust your “gut instincts”. You are the one who has watched your child grow and change from the day they were born. So don’t doubt yourself. Trust that nagging feeling in the back of your mind saying “something’s not right”. There is help for you and your child.
What should you do now?
Surround yourself with support from other families who have been through similar situations. Surround yourself with the professionals who can give you the answers you so desperately seek, and provide the help that your child needs. You need to be your child’s advocate. You need to be their voice that’s screaming out to the world saying “I need help!” Your first step will be to have your child evaluated. This may seem like a scary word, but it just means having a professional – such as a Speech-Language Pathologist (“speech therapist”) – work with your child and figure out all the strengths and weaknesses your child is experiencing and then based on that information, they can guide you in what your next steps should be. For more information about speech or feeding evaluations, click here.
There are services available to your child – even from infancy!
- State-Based Early Intervention Programs. These are programs that are specifically created for children ages 0 to 3 years, where services are provided in your home or in dedicated community-based facilities. To find out more about Early Intervention services in your state, click here.
- Head Start Programs. These are programs that are available in some states, and “promote school readiness of children ages birth to five from low-income families by supporting the development of the whole child.” For more information about these programs, click here.
- State-run special education programs. Once a child has turned 3 years old, they can be evaluated by your local school district to see if they are eligible for specialized services. For more information about the Department of Education in your state, click here.
- Private Therapy Services. There are many private therapy services that are available to your child from infancy and beyond. One such therapy is Speech Therapy. Additionally, there are specialties within Speech-Language Pathology (speech therapy), including tongue-ties, feeding difficulties, and sensory-motor based speech difficulties. Horizon Speech Therapy Services specializes in these areas. For more information, click here.
Navigating the School System: If your child has been through the Early Intervention program, their representatives will often guide you in the process of transitioning into the school system. However, some parents have not had access to that support. Either way, venturing into the world of the State Department of Education system, can perhaps be one of the most overwhelming and challenging processes parents will experience. The steps of having your child evaluated by the school system will likely present you with a new set of people and situations that you’ve never faced before. If you are not an educator by profession, then you will likely be unsure of what to expect, or how to navigate things in this environment. The first person you will likely come in contact with is a “case manager”. This is the person, assigned by the school district, who will meet with you and your child and will explain the process to you. You can also reach out to other parents whose children have been through this process, or parent advocacy groups, to get some tips.
Staying Pro-Active: Even after your child is enrolled in a school program, it is still important to be an advocate for your child every step of the way. Although the educators will be taking over your role of helping your child when they are not at home, it is important to monitor what happens in school on a regular basis. In other words, you should stay informed about the academic areas that are taught, as well as the overall language & social skills that your child is being taught daily. Make sure that you are seeing growth and positive changes in your child occurring on a regular basis. This is something that holds true, no matter their age, or what grade your child is in.
If you feel concerned that teachers are not bringing out your child’s full potential; maximizing their time in school; or perhaps they’re not receiving the right “related services” (ex: speech/occupational/physical therapy, etc.), then you need to speak up. You need to be your child’s advocate. Again, you are the one who knows your child best, and being their advocate is the only way that will make change happen. There does not need to an adversarial relationship between you and the school staff, but rather just keep the lines of communication open. Let them know how you feel, and what your concerns are. Don’t wait until an official “parent-teacher conference”, but rather, stay in touch via phone or email (depending on the school’s policies). Sometimes, you may need to ask for a meeting, either with the teachers or with the “Child Study Team” (a group made up of a case manager, teachers, therapists, etc.), if you have significant concerns. Since your child will be spending a large portion of their young lives in school (just like we did as kids), it’s important to learn how to create an atmosphere of collaboration (“working together”) in helping your child get the help they need to succeed. There are documents that describe your rights within the special education system for each specific state. Here is an example – the revised version of the document from 2019 from New Jersey.
If you have any concerns about your child, or for more information, contact us.
Susan Rothschild, M.S, CCC-SLP