When I am introduced to a new parent of a child with similar symptoms as June, I usually start with something along the lines of, “I am so sorry I have to meet you this way, but I am here to support you if you’d like it.” I say that because “it’s nice to meet you,” sounds horribly wrong in our situation. There is nothing nice about being in this group of people with children we will likely outlive. There is nothing pleasant about connecting with someone because your babies are severely disabled, and they likely won’t ever have head control yet alone sit, walk, or even talk. This is not a club you dream of joining, and this isn’t what you signed up for when you decided to have children. In fact, it is so terrible to meet you, and I am sorry your beloved child isn’t living the life you hoped for them.
If you’ve come to our site, you are likely grieving many things right now and feeling so confused about that grief because you still have a beautiful child whom you love with all your soul. Those conflicting emotions are normal and okay. Keep doing what you are doing. Keep loving your sweet angel with every ounce of your being for that is the only thing that makes sense in this senseless situation – the love and bond you share for one another.
My hope is this website, June’s website, will help you find the tools you need to be the best parent for your child. If we can make your life just a little easier, I know we will be making June proud. With that, here are a few tips on how to navigate the website and how to get started.
Begin with First Steps, under the Therapy section in the Resources tab, there is a link to Missouri’s early intervention program, First Steps. Contact them as soon as possible to get a service coordinator out to your house to evaluate your child for therapy services.There is a sliding scale fee for families based on income, but no family will pay more than $100 a month. That is an excellent deal for physical therapy, occupational therapy, vision and hearing services, nutrition consults by registered dieticians, just to name a few. These professionals are your lifeline. June had eight therapists, and I loved every one of them. I am so grateful June brought them into our lives. They were not just helping June; they were supporting me too.
Once your child is determined eligible, your caseworker will assign therapists to his or her team, and you will meet in your home for an individual family service plan (IFSP). There you will determine goals and strategies along with suggested therapies and frequency of meetings. After the initial IFSP, you will meet with your team and service coordinator every six months to review and update your plan.
After you have a finalized IFSP, and you’re in a rhythm with your First Steps providers, contact Department of Mental Health (DMH) to qualify for respite hours from the productive living board for St. Louis County. You can find DMH’s information in the Financial and Respite sections of the resource tab. Tell them you have a child with a development disability and that you need a case manager so that you can receive respite hours. They may say your child has to be three to get services through DMH, but that is not true for respite hours. Push back on this; I had to, and it worked.Once you are assigned a case manager, you will meet to determine eligibility, just like with First Steps. When they decide your child is eligible, you pick an agency to distribute the respite funds from the Productive Living Board (it honestly cannot get more confusing!). We chose St. Louis Arc because I took June to a music class there, was in the capable kids and family program, and I love the organization. The respite contact there is Ann Mangelsdorf (314-817-2275).
Depending on the severity of your child’s disability, you can also talk with DMH about the Sarah Lopez Medicaid Waiver. I will go into this waiver in greater detail in a future post.
As you will see in the resource section, there are more resources to help you along the way. These are the ones I thought were essential to start and needed the most explanation. If you have any questions or need support, please reach out to me by sending an email through the contact section of the website.
I wish you all the best as you start down this path. You will be awed, transformed and humbled by your child. You will be surprised by the people your child brings into your life – a group of amazing people only your special angel could have brought to you. I am not going to say it gets better because it may not, but you will get through this, and you will be okay. In the words of Winston Churchill, “If you are going through hell, keep going.”