“Wait, they used to do what!?!” That was my reaction when I found out how people with disabilities used to be treated. You see, in the not-so-distant past it was common practice for kids with special needs to be institutionalized. For life. Wrap your head around that for a minute. Children who had done nothing wrong and posed no danger to society were locked up for their entire lives!
Gone are the days when kids with special needs were locked away and hidden from society. This is thanks in no small part to their parents advocating for humane and equal treatment. Your child may not need you to protect her from an institution, but she still needs you to stand up for her! Read on to learn 5 key ways to advocate for your child.
- IEPs & 504s
Let’s start with what a diagnosis is and isn’t. A diagnosis is simply a specific identification of some sort of health problem or disorder (physical or mental) . It’s made by thoroughly examining the person and his symptoms. A diagnosis is NOT a judgment of your parenting or a ‘label’ that will ruin your child’s life.
A Diagnosis Gives Better Understanding
Think of a diagnosis as giving you both binoculars and a microscope. Without it, you can still see what’s happening right in front of you and understand it to some degree. Once you have the diagnosis you can see it all. The big picture comes into view. So, the way the various ways your child’s strengths and struggles work together become clear.
At the same time, you can better understand the small, yet often significant details of what your child is struggling with. As an example, after my son’s Dyspraxia diagnosis, I found out that rigid thinking is a common problem. Suddenly his meltdowns when things didn’t go exactly as he ‘wanted’ (really as he expected), made more sense. He wasn’t spoiled when he cried over not having the treat he was expecting. His brain just couldn’t switch tracks and handle a change in routine without some extra help!
A Diagnosis Helps You Seek Support
Let’s be real here for a minute. Parenting is beautiful, but it’s also hard. Parenting kids with special needs can be uniquely difficult at times. If we’re going to make it through with our sanity intact, we’re going to need support!
Once you have a diagnosis you can seek out support specific to it. Your doctor’s office likely has information on local groups. A quick internet search can probably lead you to even more. Let’s not forget Facebook, the mother of all resources (if you’ll forgive the pun). Poke around on there and you’ll almost certainly find one to meet your needs.
Side note: If part of your family’s unique needs includes a gluten-free diet, be sure to join my new Facebook group, Fearless Gluten-Free Living!
A Diagnosis Allows for Targeted Therapy
I’m a huge advocate for therapy. There are a lot of options out there. You can get therapy through your local school or from a private provider. You can still get therapy without an exact diagnosis. There are many general diagnoses that can get you covered. What’s important about an official diagnosis is that it allows your therapy to be better targeted. It’s like the difference between learning to aim your arrow and just firing it off in the general direction of an animal!
Advocating for your child to get therapy is one of the most important things you can do. Therapy isn’t about ‘fixing a broken child’. It’s about giving kids with special needs the tools to cope and function in the world around them. Society may not always be willing or able to meet their exact needs. Therapy can help them figure out how to make life work in those moments.
There are a few different options for therapy. Many families use a few of them.
All public schools have therapists they use. Public school students who meet therapy qualifications have access to this help. In many states, private school and homeschool students can also seek therapy through the public school system.
No matter where your child is educated, prepare to advocate hard for school-based therapy. Some schools are great about offering services to kids with special needs. Many others fight it tooth and nail!
Private therapists work at hospitals, clinics, and stand-alone offices. Accessing therapy this way will require either health insurance coverage or paying out of pocket. If you are able to afford it on your own, it should be a fairly easy process to get going. Ask your child’s doctor for a referral to be evaluated. Then the therapists will test your child and she if she needs therapy.
If you need your insurance to cover the cost of therapy, the process is basically the same. Ask for a referral and get an evaluation. The key is to make sure that your doctor and therapist code it in a way that will allow insurance to cover it. Check with your insurance ahead of time to see what they will cover.
In a perfect world, parent-guided therapy would always be done in conjunction with a licensed professional. You are the expert on your child. They are the experts on the therapy. Together you will make the best team to help your child. Ask the therapist(s) for a list of things to work on at home.
There are times when getting outside help just isn’t possible. When that happens, there are still ways you can help at home. In my shop you will find the Picky Eating Game Plan and the Guide to Therapy in Homeschool. Both can help you meet various therapy needs at home. Mommy Speech Therapy is another great resource recommended by our therapists.
What’s the first thing you should do when facing a challenge? Well, okay, the second thing. The first step should ways be to pray. After that, education is key. First educate yourself. Then, use that knowledge to educate others.
Education Creates Empathy
Many people’s lack of empathy actually stems from a lack of education. They don’t understand Autism, or Down Syndrome, or Dyspraxia, etc., so they make incorrect assumptions.
While those assumptions often lead to judgments, they can often be combated with simple education. If my teachers had better understood my physical struggles, they may not have assumed that my poor posture was a sign of laziness.
Education Leads to Accommodation
Educated friends, family, and teachers can better meet your child’s needs. If people don’t understand your child’s needs, they won’t be able to meet them. Show the people in your child’s life how they can help him. Give them the tools they need to help your child succeed.
Education Eliminates Excuses
Most people want to help others. They want to do what is in the best interest of children. At times, though, you’re going to encounter the opposite. Some people are too stubborn or heartless to accept the truth. If teachers and leaders are resistant to accommodating your child’s needs, at least they can’t blame it on a lack of education.
IEPs and 504s
If your child attends a public, private, or charter school, get a formal plan in place. ASAP! Your two main options are an IEP and a 504. Which plan you get will vary based on your child’s specific needs. You can find details about which plan best fits your child here and here.
The process for getting a plan set can be a bit rocky at ties, but there are a few things that will make it easier for you.
Know Your Rights
I’d like to be able to say that your school will fall all over itself to meet your child’s needs. It’s sadly not always true, though. Some schools will be resistant to offering the help your child needs. That’s why it’s important for you to know your rights, so you can be the best advocate.
Request an Evaluation
Your next step is to request an evaluation. Yes, even if you already know what the issue is. Request that she be assessed to determine her eligibility for an IEP. If the school tries to tell you to go through some sort of intervention team before getting evaluated, politely decline. They can’t legally require it, and it just delays the process of getting a formal plan in place.
Work with the Teachers
At the beginning of a new school year, teachers are inundated with paperwork. It can take a few weeks for them to wade through everything. Don’t get mad if they don’t yet know about your child’s IEP or 504 on day one. They may not have even seen it yet!
Instead, be proactive. Send your child’s teacher an email ahead of the new year beginning. Keep it short and to the point, and above all, keep it friendly! You want to start an open and collaborative dialogue that allows you all to work as a team!
In the past, the plan for kids with special needs was to basically hide them away from society. First they were put in institutions, then special schools, then kept full time in ‘special education classes’. Now we know that inclusion is the best choice for all kids!
Inclusion Provides Role Models
When kids with special needs are fully included in regular classrooms, they get the benefit of having role models in their typically developing peers. If a child who struggles with reading only ever hears other kids who struggle, how will he know what is truly possible? Similarly, kids who see other kids managing their emotions well will have better strategies for regulating their behavior.
Kids with special needs are also great role models. They can teach their classmates a lot about perseverance. They can also teach their classmates not to underestimate people with disabilities. The kids will see that everyone can succeed!
Inclusion Leads to Higher Standards
When students are in inclusive general education classrooms, they are more likely to meet and exceed the goals in their IEPs. A lot of that is because in separate ‘special education’ classrooms, they aren’t getting access to the main curriculum that way. So, they never get the chance to keep up with classmates.
Inclusion Prepares for Independence
Your child is going to grow up some day. I’m guessing you want her to live as independently as possible. That means being able to function in society as a whole. Having schools that are truly inclusive best prepares kids for this. They learn how to work with others of varying abilities, regulate their emotions in times of struggle, and advocate for themselves!
Advocate for Your Kids with Special Needs
Raising kids with special needs means that your child needs help in ways that others may not know or understand. The good news is, he has you to ensure he gets it. You are your child’s first, best advocate. He needs you to make a plan for how you are going to advocate for his unique needs!