Get Reactive and Proactive!

FREE AFOs for Infant Stroke Survivor!

We have good news! Lily will get a new set of leg braces for FREE! How? Because I got reactive and angry and sent a complaint letter to the owner of the company. The brace and limb company that failed to give Lily the prescribed AFOs responded almost immediately to my letter of complaint. I mailed the letter last Monday and they were calling our physical therapist and us by Tuesday. The owner was extremely apologetic for the lack of attention given to our daughter and her needs. The owner wanted to make the situation right and scheduled Lily to be refitted the very next day! Her father took her to the appointment and Lily was casted and measured thoroughly. She will get a new set of articulating braces with derotation straps. Unfortunately we have to wait for another three weeks for them to be delivered, but it will be worth it. Lily will finally get what she needs.

There are a couple of lessons I learned through this experience with the help of a dear friend who also has a child with special needs. When my friend read my last blog post, she became concerned and gave me a call. Her call was exactly what the Lord knew I needed. It can be lonely being the parent of a child with special needs. Finding someone within your own community who is dealing with similar issues is rare, but fortunately God has placed someone in my life who “gets it”.

We discussed the quality of care my daughter receives through a free government program as well as the difference between such programs and privately contracted services. Currently Lily receives physical therapy through a government early-intervention service provided within our county of residence. Because of government regulations, the physical therapist is only allowed to work with Lily a certain number of hours within a week. And Lily does not qualify for occupation therapy under this agency’s regulations because of her age. In addition, I learned through my conversation with my friend that at the age of three, the early-intervention program is “done” with Lily. She will then transition to the school setting and will attend pre-school through the same agency. However, she will only get physical therapy if Lily qualifies for speech therapy. As I have already discussed in previous posts, Lily certainly has no trouble with verbal communication, so I doubt she will qualify. So what happens to Lily after the age of three? This will be our family’s responsibility.

My friend advised me to get Lily an evaluation by a private therapy provider. The private provider will give Lily the physical therapy and occupational therapy she NEEDS and not what she qualifies for under strict government regulations. It is also important that our family begin a long-term relationship with these therapists as it is likely she will need their help for years to come. While the government services are free, which is a plus, they are extremely limited and only temporary. Lily needs something consistent, proactive, complete, and enduring.

Our family is preparing for the additional cost of private therapy as it will be a financial commitment. We do have medical insurance, but there will be co-pays of around $60. While that might not sound like a lot to some, it is an additional monthly medical expense. However, we are certain our money will be well invested.

I am extremely grateful for my friend who is guiding me through this process of being a parent to a child with special needs. I am always surprised at how much I do not know about the ins and outs of therapy, insurance, and referrals. Everything is complicated, but I do know that Lily has no greater advocate and fan than her mother!