So, you have this kid that is yours, who you love with all of your heart. But something is nagging at a synapse in your brain. You can’t quite make the connection, but you slowly begin to notice things. Little things. Like your 16 month old isn’t walking, which okay, is still within in the range of normal. Or your two year old isn’t talking, still within the range of normal. Or your 18 month old isn’t responding to his name or other noises. Or still yet, runs away when a band starts to play at your favorite bar or sits in a corner and rocks if his block tower falls over. But at the well-baby visits, the pediatrician or nurse practitioner or doctor tells you, “Oh, this is all within the range of normal.”
That range of normal.
But you really think something isn’t normal. And you’re worried and maybe even a little scared because you don’t know what to do. That’s what this is about.
For those parents who are concerned their children are not on the typical developmental path, there are organizations and services available that can help. This blog post is about some of those organizations available and at what ages they can be accessed. (Disclaimer: I live in Massachusetts and therefore am most familiar with the Massachusetts models. I will be writing from this experience. Different states work differently, though the overall programs should be similar enough that this can be useful in getting you started with your Google searches for your state. I would encourage commenters to write about the organizations and processes in their states.)
So, what should you do after that well-baby check- up where you still don’t know about this “range of normal” for your child. For children 0-3 years of age, the first thing is to check out Early Intervention. What happened in our case when we called was we received an appointment for an evaluation about 30 days after our call. Someone came into our home and played games with my son (which were really developmental assessments disguised as fun!). Once the evaluation was written up, it was determined our son did qualify for services. It took about two months for the services to start due to the availability of staff to work with him. He had services once a week for about three months — though we wish we had called earlier to maximize the services. For many, Early Intervention services will be free or required to be covered by insurance. Reading through the link above and speaking with someone at your local Early Intervention Office will answer those questions.
We then learned about two excellent organizations in our area and set up evaluations with them as well. So if Early Intervention determines your child has a speech, gross motor, fine motor or some combination thereof delay, ask specifically for references to area organizations that you can use for those therapies. Early Intervention may also recommend specific testing by specific specialists. For example, if there is a speech delay, EI will want to first rule out a hearing issue, so EI will tell you to have your child’s hearing tested by an audiologist. If your child is having difficulty walking, EI may wish you to recount any potential injuries that may have happened at a younger age causing incorrect healing, etc. Once these are ruled out, EI will work with you on what therapies your child should be receiving.
Also, and this is the biggie – once all physical causes for delays are ruled out, ask for information on a neurodevelopmental center for a full evaluation. Really, use the words “neurodevelopmental center.” A center of this sort will have highly trained psychologists and other associated professionals to conduct tests on development. This is who diagnosed our child with Pervasive Development Disorder Not Otherwise Specified (PDD-NOS, aka one of those autism diagnoses that disappeared in the most recent Diagnostic Statistical Manual of Mental Disorders).
And once you have that meeting and that assessment, one of two things will happen:
- You will learn your child is okay, but maybe a little quirky. But that overall, there is not much to be concerned about at the time being (though always call back later if doubts remain). YAY!
- You will learn something is going on with your child. And it may be big, and it may be small, and it may even be a scary. But then, hey, you have a diagnosis. And you know what a diagnosis means? Open doors to services. So even though a diagnosis can be reeling or difficult to take in, there is still some room for YAY! Because you can now access help.
On a child’s third birthday, Early Intervention services end. For those who had been receiving services for some time, the Early Intervention specialist would, hopefully, guide you to the next steps. But for those of you like me, who either received Early Intervention too late for the specialist to do more than provide basic information or for those who don’t truly suspect something is wrong until after your child turns three, the next step is your local public school system.
Yes, yes it is.
Public school systems are required to pick up where Early Intervention left off. Yes, they are. And there’s even another resource to talk you through what transitioning into preschool from Early Intervention should look like. But if you’re starting cold, this is what you should do:
- Collect any and all paperwork you have on your child’s development in one place — regular medical records, evaluations done by specialists, and any notes you may have taken yourself.
- Call your local public school’s central office. They will have someone responsible for Special Education in your school system. Introduce yourself, explain you would like the schools to evaluate your child, and follow their instructions. This is where it gets a bit hairy — every public school system is different. But there is a very strong and clear law known as Wrightslaw that is specific to special education. Very specific. All of your child’s rights to accessing public education is in this law. Be aware of what those are going in so you can advocate for your child to the best of your ability.
Once you have spoken to the person in your school district responsible for early special education, you will receive notification of the date of evaluation. The evaluations will depend on what you ask for — so be clear on what your concerns are when you call. (“I would like my child to receive a speech evaluation” is better than, “My child is having difficulty talking.”) You will take your child in for your evaluation (and this is when you should bring in copies of all those records I told you to collect in one place!), and within 30 days after that, you should have second meeting where the details of services available to your child will be discussed. This will be your first Individualized Education Program meeting. Depending on your child’s needs, you may need to get used to attending these meetings as from here on out, they may happen every year. This document will clearly lay out the services the school will provide your child, what goals are set for your child to meet within the next 12 month period, and what kind of class experience your child should have. This is all highly tailored to the child, so for everyone, this is going to be different. The best tip in developing an IEP I can give parents is to remember that you know your child best. The meeting is supposed to be a discussion. This is where you raise your concerns and you ask for changes to the document. You may wish to accept or refuse services, both of which are your right. It’s important, however, to use the meeting to go over all of this with the IEP team.
Once this happens, you will receive the official IEP in the mail. You will need to do one of three things within 30 days of receiving this document:
- Accept the IEP as it is by signing it.
- Reject the IEP (either completely or partially – and it is good to include a letter as for your reasoning on this).
- Request a meeting to discuss the IEP further.
Once an IEP is in place, it should be followed throughout the school year. We could talk more about how to make sure this is happening and what to do if it doesn’t, but this post is geared toward getting you started in getting your child the help she or he may need. The rest will be saved for another day.
So what if your child doesn’t need specialized instruction but has a disability that requires some amount of accommodation? Well, my friend, in your case, you may wish to ask about a 504 Plan. The 504 plan is a part of the Americans With Disabilities Act, whereas an IEP is Wrightslaw. They are different documents under different laws for different circumstances. A 504 plan is less about development and specialized instruction and more about classroom accommodations. For example, a child who is blind but with no developmental delays may need a 504 plan for books to be printed in braille or for access to an audio notetaker. A student who is deaf but who has no developmental delays may need a teacher to wear a wireless microphone that is cued into the child’s cochlear implants as well as preferential seating at the front of the classroom. A 504 plan may also be appropriate for a child with a chronic illness that prevents the child from attending school regularly.
A 504 plan, once created, should also be followed throughout the school year.
Whether your child needs an IEP or a 504 plan is dependent upon your child’s specific needs. But a child should never have both — the IEP supersedes the 504 in situations where both could be seen as necessary, ergo, the 504 information should be written into the IEP. There is never a need for two documents.
So, there you have it. If you have concerns about your child’s development and your child is between 0-3 years of age, call your local Early Intervention Office. If your child is three or older, call your public school system’s central office. If your child turns out not to need services, great! Now you know and can put your mind at ease, but you also know what you need to do if you need to revisit the issue. And if your child does get a diagnosis, remember, your child is who she or he has always been. You just now have more information on who he or she is and can use that information to get the right assistance to help your child become the best self your child was meant to be.
Liz lives in Salem, MA with her husband, children, a rabbit, and a cat. She works as a coordinator to an academic department in Boston. When she’s not too busy with all of the above, she can be found in yarn stores and book stores. As evidenced by this post, she occasionally finds time to write as well.