What next?

If you are new to the apraxia diagnosis or you suspect it, you may feel overwhelmed by all of the information out there. Or maybe you just don’t know where to start.  Remember, I am not a doctor or an SLP, I am just a parent going through the process and sharing information. This would be my advice in this order (click on the underlined links for more information):

  1. Trust your gut. Listen to that inner voice. You know your child better than anyone and you are their best advocate. If you feel like there is something off with your child, whether it be speech development or otherwise, you are likely correct. You may hear from well meaning friends and family: “he will talk when he’s ready” or “boys talk later than girls” or “cousin Fanny didn’t talk until she was 4 and she turned out just fine”.
    Listen, I’m sorry, but this is a load of crap. While many children who speak late turn out just to be speech delayed, many do have disorders that require early intervention. It is always best to investigate and get professional advice rather than wait.  Your pediatrician may even advise waiting. Ignore him/her! You don’t need his referral to investigate. This is your child and you know best. The first few years of a child’s life are critical in brain development. Time lost is precious and it may be difficult to catch up if you wait.
  2. Get a hearing test. Many children who are late to talk or difficult to understand turn out to have some sort of fluid in their ears, repeated ear infections and/or hearing loss. Early intervention will require a hearing test before setting up an evaluation so this is a necessary and valuable step in the process.
  3. Get an evaluation. All states have something called Early Intervention for children ages 0-3. Each state may have a slightly different name for it, for example in Connecticut it’s called Birth23. They come to your house and do a free evaluation. It costs nothing to you, but can prove to be so valuable in the long run. They will evaluate your child’s development overall and see if you are eligible for services. They will tell you how your child rates in his receptive and expressive language skills and where to go from there. If your child is over 3, this is when the public schools take over. Contact your school for more information.
  4. Visit this website:  Apraxia kids. This is the most reliable and reputable source of information about apraxia on the web.
  5. Buy this book:  The Late Talker.  This is a great resource you will refer back to often during your journey with your child’s speech delay.
  6. Find an SLP: This is important in getting a diagnosis. Early Intervention can’t legally make this kind or any kind of diagnosis. You need to set up an evaluation with a private SLP (speech language pathologist).  They may also recommend you see a developmental pediatrician to rule out other disorders that can be linked to speech delays. Your pediatrician or Early Intervention may be able to make a recommendation, if not ASHA is a great resource.
  7. Get a diagnosis. Once you have this, then you have the ammunition you need to fight for insurance coverage, get private speech therapy and get the right speech therapy. I cannot stress this enough. Therapies used to treat apraxia differ from speech therapy used for other disorders. Without the proper treatment, you may find months going by with little to no progress. Some will say that you can’t diagnose apraxia under the age of 3. This can be true depending on the child, especially if there are no sounds at all. But if you can at least get a working diagnosis you can take a step in the right direction and get going! If it turns out a year later your child has some other sort of speech delay, apraxia type speech therapy will not have hurt him/her. It will only help. If it turns out they did have apraxia, then you will have likely made great strides when it was important to do so. If you don’t get the answers you need from one SLP, try try again.
  8. Get support.  I’m going to assume your spouse or partner is informed and supporting you already. Now it’s time to educate your family and friends as to what apraxia is and how they can help. You will need their support, and they will need to know how to properly act around your child to avoid frustration. Outside of your family and friends, I highly recommend reaching out to other families with apraxic children. There is nothing to compare to that level of understanding. You can find support groups and discussion groups online, such as  apraxia-kids, baby center, and facebook. Don’t be afraid to reach out, it’s very likely who you are reaching out to is just as eager to talk to you. Other parents are a great resource of comfort, information and inspiration! If you are finding your self anxious, depressed and overwhelmed by the diagnosis, and talking to friends and family doesn’t seem to help, don’t be afraid to get in touch with an actual therapist. This is a stressful time and it’s understandable if you would need additional professional support. The better you feel the better you can parent and help your child.
  9. Educate yourself even further. Continue to research and be informed. Participate in your child’s therapy and learn how to bring these techniques into your home. Research and try various therapy techniques (with help) to see what will work best for your child.  Examples of these would be the Kaufman method,  Prompt , Hanen and Speech-ez. Your therapist may use a combination of methods. Don’t hesitate to do your own research, make suggestions and ask questions! See if occupational therapy would enhance your child’s speech development (see my posts for more information on this)
  10. Slow down.  I don’t mean this in regards to advocating for your child, or aggressively seeking the appropriate therapies. Slow down with your child. Slow down your speech, take the time to be in the moment with your child and break things down in a way they can process and even hopefully repeat. This may be a crazy time. You may be running from appointment to appointment, spending free time researching or trying to get grants for funding. It can be frenzied and stressful. It’s important to not be in speech therapist mode all the time. Enjoy your child for who he/she is now, separate from the speech issues. Give him or her a hug, and take a breath.   :)
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2 thoughts on “What next?

  1. Linda,

    Thank you for sharing your story. I’m the father of an Apraxic 5 year old. He was diagnosed two years ago and he’s worked so hard, but has a long way to go. What resonated with me in your blog is that your description of Henry is so similar to our son Finley. His ability to connect without words and his magnetism – people are drawn to him. Yesterday his preschool nurse called extremely concerned that his teachers believe he’d had a partial or absence seizure. We’re terrified. That’s what drove me back to the web. When I typed in Apraxia and seizures your blog was near the top of the page. You haven’t posted in some time and I pray that’s a good sign for you and Henry. All the experts tell us with hard work and diligence Apraxic kids can overcome many of their challenges. I also pray that’s true. It’s difficult to find information or stories about Apraxia’s impact on older kids and young adults, so maybe it is. Or maybe it’s still the unknown. I believe Henry is a few years older than Finley. How is his progress? Can you share any updates? Feel free to reach out to me directly. Again, thank you. I want to spend more time with your blog and the resources you shared, but I hope to hear from you.

    Bryan

    • Bryan, it has been some time since I have been on this blog and may just be seeing your comment now. If you would still like a private reply, please message me your contact info. I hope Finley is doing well.

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