Updated: May 8
1. Join a Facebook support group parents always share helpful information- socialize or choose to observe
I know I have spoken about this in the past but really finding my community is what changed the way in which I thought about the diagnosis. This was
the turning point in my journey in getting my son the help he needed.
After reading overcoming Apraxia it made me realize that although I felt alone, there were many parents out there that were going through the same things as me and had a wealth of knowledge and experience that I could tap into.
If you are like me you can choose to just observe and get inspiration at first. Once I had gone through the groups' information and FAQ's I got so many questions answered. Such as where to find the best therapists, where to get free resources such as financial need and respite. I even met moms in my local area and set up a play date with our boys. If your child has Apraxia here are a few of my groups that I found to be helpful:
2. Request an IEP for your child and the state will be required to offer services for your child.
I covered IEPs in a previous post, IEP is an abbreviation for Individual Education Plan, and this is an essential part of "getting" free resources from the state. IEPs are considered legal documents and must be followed by the school in which your child attends. A little note to remember is that every school district gets a dollar amount for your child to be able to offer speech, occupational and etc. therapy so although the education plan is on paper, we as parents have to be our child's best advocate and ensure your child receives all the help they need. If you think your child may need an IEP, click here to check out step by step on requesting/writing an IEP.
This step can be intimidating especially when you don't know where to start. I would recommend getting an IEP advocate. IEPs and special education is a whole different world and it is a system in which you have to learn. Here's a shortlist of advocates in the Georgia region.
You can also hire an educational advocate by contacting Parent to Parent of Georgia at 800-229-2038 for a listing of Georgia educational advocates.
3. Research non-profit organizations that publish free resources and assist with locating specialists in your area (ex: apraxia kids)
Non-profits are hidden gems in this world of special education. They usually offer a sense of community, information and usually have free printable resources that you can learn from, distribute to friends and family and or teachers to assist your child's village and understanding his diagnosis. My son has an Apraxia of Speech and I learned a lot about Apraxia Kids. Honestly, Apraxia Kids not only helped me find a specialist in my area that specialized in Apraxia but I also was able to find out about the support group, get a conference grant, and other much-needed classroom kits for my child's teacher to use in the classroom to help others understand his diagnosis. Because in this process , the thing to remember is that all the running around will be worth it.
Tristan's favorite pass time while riding in the car right now is playing learning apps.
Learning apps are a really good tool for practice at home and on the go. My son and I really like the otsimo app. This app does have a free version but to access all the practices there is a monthly fee of $14.99 and it is totally worth it. The cool thing about this app is that they do give you a 7-day free trial so for those on the fence about apps and their effectiveness please take advantage of this trial period. A quick breakdown this app features practice in first words, syllables, animals and etc. Once you select what you want to practice you go through the module and the app records your child's voice to ensure they are saying the word correctly, once said correctly then the child can move on to take a cool photo with the filter (Tristan's favorite part), once the photo is taken the child can choose to move forward to one more practice, once completed the child can then complete a game (i.e: popping bubbles). I especially love this app because I love hearing my son use his voice and him having fun with the app truly makes me smile. There are a lot of apps out there that are free as well but usually come with some type of ads. You can check out a list here!
4. Request a developmental evaluation for your child or a referral to a developmental pediatrician
Developmental pediatricians are well versed in all areas of development and are usually your best go-to guide to get a comprehensive evaluation. In my experience, these providers do have a longer wait time for appointments. Due to the long wait, my son's pediatrician at the time just referred him to a speech-language pathologist for evaluation. REMEMBER, YOU ARE YOUR CHILD'S ADVOCATE. So if something is not moving quick enough for your child and you can do something about it, do it! Here's a helpful list of providers in the Georgia region.
5. Apply for financial-based grants and/or Medicaid- a lot of these programs do have income requirements so please refer to your individual state guidelines for reference.
According to their website, Supplemental Security Income (SSI) is a Federal income supplement program funded by general tax revenues (not Social Security taxes):
It is designed to help aged, blind, and disabled people, who have little or no income; and it provides cash to meet basic needs for food, clothing, and shelter.
Need assistance with applying, check out the SSI Starter Kit!
Kattie Beckett Medicaid
if you are denied SSI, you can apply to the Kattie Beckett Medicaid program. According to the website, it was established in 1982 under the Tax Equity and Fiscal Responsibility Act/TEFRA (P.L. 97-248), the Katie Beckett Medicaid Program (KB), permits the state to ignore family income for certain children who are disabled. It provides benefits to certain children 18 years of age or less who qualify as disabled individuals under §1614 of the Social Security Act and who live at home rather than in an institution. These children must meet specific criteria to be covered.
Qualification is not based on medical diagnosis; instead, it is based on the institutional level of care the child requires. Title 42 Code of Federal Regulations outlines the criteria used to determine eligibility.
Special Needs Respite
Is financial assistance for caregiver relief. They have many organizations and financial assistance programs such as the NOW/COMP waiver. If you are a parent of a child with special needs and are desperate for a break but can't afford it, then you can fill out their online form.
Please note that Special Needs Respite is a funding source, not a childcare provider. We will do all we can to assist you in finding a caregiver, but we don't provide this service.
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