Navigating the road less traveled…

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I knew our journey would be different, and at times, more difficult.  I’ve quickly learned that it’s also, pretty frequently, even more joyful and fun and promising than I ever anticipated. But not, it seems, when you are dealing with bureaucracy.

Almost as soon as we heard the words, “Your daughter has Down Syndrome,” everyone started telling us about Tennessee’s early intervention program, TEIS. It’s provided some great and immeasurable benefits for little Miss Lila. Three therapists are at our house so often, our toy poodle Tigger barely even lifts his head off the couch to acknowledge their presence anymore (and that says A LOT). They love Lila almost like family. After parents and best friends, they are the first people I tell when Lila reaches a new milestone.

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And so it was after great soul-searching that Charlie and I decided we wanted to enroll Lila in Siskin for her early intervention services (which include all of her therapies). It would mean giving up the therapists’ home visits but it would also mean she could learn to interact with other children her age, of all abilities, which is so important to us. I want my daughter to feel like she is liked and loved and fits right in to any group.  As an only child, it’s one of the only things I can’t give her at home…yet. And Siskin is AMAZING! We are so lucky to have it in our Chattanooga backyard, right?!? Their teachers are trained to help special needs and typical children learn together. Lila can receive her feeding therapy at an itty bitty table surrounded by other 1-year-olds who are eating the foods she is working towards.  Her physical therapy can come on a colorful carpet with new best friends zooming by her, so she can see how fun walking can be. Occupational therapy means sitting in a circle with a dozen small hands keeping the beat by playing musical instruments while she learns to grasp a tambourine. 

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I’ve been researching the approval process for months, anticipating every question I need to ask, trying to figure out every detail ahead of time. Because you see, special needs children almost always need a state nod to attend Siskin.  Typical children can go on a private-pay daycare basis.  Without state approval, Lila could go to Siskin but would be treated as a typical child, without access to their on-site, specialty therapists. As a high-functioning child with Down Syndrome, we are learning that this approval is hard to come by.

The state of Tennessee apparently thinks that any child with Down Syndrome who is showing progress with home therapy wouldn’t benefit enough from a specialized center like Siskin to warrant the expense. But what I know is that my Lila is worth any cost.

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We are in the middle of this approval process right now. I am constantly asking questions, making phone calls, seeking out answers. One person sends me to another who is confused about why I am calling. No one’s explanation of what happens next is the same. Some answers make me angry, and even more feel like they are in response to questions that have never been asked before. It can feel like the weight of the world is on my shoulders, without any guarantee that this role as Lila’s advocate will ever get any easier. And, admittedly, sometimes it makes me really bitter.  Seeing other moms who seem like their biggest worry is scheduling their child’s next playdate or finding the perfect smocked outfit can make me jealous and even more overwhelmed.  But, more often than not, I realize this is unfair to them, and most of the time my tired mind makes incorrect assumptions. At this moment, it is an all-consuming road to navigate that sometimes feels like it isn’t even paved.

But I know I’m wrong about that.  I know there are many, MANY mothers who have been here before.  If their questions and goals aren’t exactly the same, their intent is. And at the end of the day, my girl is so worth all of this frustration and struggle and feeling of injustice. So I will never quit.  Some days I will complain and feel defeated and want to watch trashy Real Housewives shows to escape.  But I won’t give up. Because regardless of any state policy or any written rule, Lila is my compass. One that I won’t hesitate to fight for.

If you are a special needs mom, know that you are not alone. Sometimes being your child’s advocate feels like it’s the hardest job you’ll ever had. And it might be.  But maybe we were put in these shoes because no one could walk these miles quite like we can. Maybe it’s a roller coaster that makes the highs more rewarding, even though the lows can sometimes bring us down. But the nice thing about a roller coaster is it only takes a second to be back on top.

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6 responses »

  1. You and Charlie are amazing and truly blessed with a beautiful daughter who has real parents who care! Remembering your family daily in my prayers.

  2. Your daughter is beautiful and the most precious baby! She has no flaws even with down syndrome! I was told when I was pregnant with my son that he had DS, and I was very scared the whole time and he came out with out it, but I was well prepared and told my self either way he is mine and I will love him and he will be perfect! I personally LOVE DS babies/ Children because they have something about them that no one else has, and I can’t explain it but they are just so sweet and even as they grow into adults they are so loving towards everyone and they don’t judge others. My BFF has a sister who is 35 with Downs and I love her to pieces and she cracks me up and she has no cares in the world and does her own thing, imagine if we all did that, we would all be happy all the time 🙂 Anyways, you are a GREAT MOM and your baby is Amazing and Beautiful and she will grow and learn!
    Marie

  3. Lila is gorgeous. For reals.

    I’m a special needs mom, too, but my son is Autistic. A totally different set of circumstances, for real. I just wanted to pop in and remind you, as you said, that you’re not alone. Others have walked in shoes a lot like yours and they’re ready and willing to hold out a hand or a handkerchief to keep you steady along the way.

    Make sure you’re getting YOU time and downtime and that you have found a niche for yourself in your mind that you can hang out in when you need to. I have found a lot of parents with special needs kids are involved in online book clubs and some write fan fiction and so on… To give us a place of our own. 🙂

    May God bless and keep you and bring you joys that you’d never know without Lila.

  4. Your little girl is beautiful! So precious! It has damn near brought me to tears reading your blog, it’s filled me with happiness, hope, an understanding and at times, frustration. I had no idea just how much work people raising a special needs child have to go through, but what you and your partner are doing is truly wonderful. I wish you nothing but the best for yourselves and Lila! Wonderful blog, thank you for telling your story 🙂 x

  5. Amen. My child’s challenges are different, but, yeah…I’m familiar with that unpaved road. I love your posts and look forward to reading more. I know you will continue to inspire me!

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