Monday, October 10, 2011

Marley's Therapy Adventure

Boppy/Tummy Time
Let me start at the beginning well I want to say this was the beginning its hard to recall when the real start was but I will call the Boppy/tummy time the beginning. So any who as I mentioned in the Marley section I took her into our local Early Intervention program when she was just 5 days old, now being that she was only a tiny little baby there really isn't much you can do therapy wise, they did however offer suggestions and support if there was any concerns with feedings mainly seeing that other than sleeping and pooping babies eat so for the first few months that was therapy and of course tummy time. So after the crazy time (OHS time) the "REAL" started :). All of Marley's main services started up. Her PT (physical therapist), DS (developmental specialist), and a little OT (occupational therapist) started coming out to our home. Now that was an amazing thing offered from the services they were free and home based and I couldn't have been any more grateful than I was, but back to the "REAL" Marley's PT suggested proper positions to encourage while Mar is just hanging out or whenever we got a chance to just post her up like the first picture shown and I cannot tell you how long it took for us to get Mar to post up with her head up like that. Children with DS are born with Low muscle tone and every child is different and every case of DS is different and unique and so after Marley's OHS it took us a while to get back on track because of her recovery and so step one was to get her comfortable enough in this position to build up enough muscle to get her to roll over now that in itself also took quite some time but Mar has always worked really hard and has never failed to amaze us when she finally builds up the strength and courage to do what she knows how to do best. :)

BUMPO TIME!!! Marley was probably closer to sitting up before the whole rolling over tummy time phase she has never been one to like the whole tummy time aspect even now she prefers to just sit so the bumpo also provided by her PT was GREAT! I would suggest it for any baby really no matter what, they are great! So the PT was coming 2x a month and always has with a weekly option to see her at a group therapy session with other children in the Early Intervention program and my favorite not only my daughters DS but an AMAZING friend of mine Tanja Ford started coming weekly and I cannot begin to tell you how much I have learned from her. She has so much experience and knowledge and has worked with Marley better than anyone I have ever seen try. There is something I haven't shared about this cute lil thing and that is that she is one stubborn child. Now most are but there is this special spice Marley has that not many are able to see but Tanja never gave in and never let Marley own the situation because if you let this girl win she knows she can get away with not working to her potential. With every task provided Marley worked so hard to do and with each task came a lot of time offering the opportunity over and over again and with that Mar NEVER does anything until she is 100% sure she has it down but with Tanja, our PT and myself working with her she always did her best (tried to get out of it with tantrums but none the less). So back to the bumpo great tool to help build her core strength and we did a lot of focus on teaching Mar to bring her arms to mid-line to build up strength in her arms and shoulders. It was an awesome tool for her therapeutic journey.

Lycra Fun
OMG!!!! The Lycra is the most amazing piece of material ever invented!!! Not only does it feel awesome but it has many purposes. I cannot begin to tell you how much this piece of material helped in this adventure. We did a lot of work with Marley in this great piece, not only did it help assist in helping her sit up without the use of the bumpo but it helped her gain the confidence to roll over all on her own. It has very many fun purposes as well along with rolling her over in it we still are able to swing her in it and bounce her too. With the motions she uses while in the Lycra she is able to push off using her arms and legs building those muscles up and is also able to build up more core strength while sitting up in the material. It's a great therapeutic piece of material and would recommend it to anyone.

Big Girl Toys
The last set of toys or helpful objects on Marley's therapy adventure have been the ride on/ push toys. Never saucers though I've been told by many that those have never been useful especially with children with DS, they tend to promote bad habits and end up being contraptions our little ones depend on. After working those legs so hard by standing in one of those sit ins the kids are able to just plop themselves down and are able to sit as if nothing ever happened and so to take them out of the contraption and not have that same result outside of it leads to a dependence in it and a lack of wanting to do the rest of the hard work themselves and so NO saucers people!  But the ride on toys where they are able to work those little leg muscles and push themselves around are great! They allow the child to be able to push down on the feet and extend those legs and build up those muscles needed to walk and such. Marley was never crazy about it mainly I think it's because she knew what our angle was and she knew what we were trying to get her to do. It was a fun process though and as soon as it wasn't we pulled her right off and moved on to another activity so she wouldn't grow resentment towards the toy. Now the toy shopping cart was always good times. We were able to make a lot of fun activities using this toy and getting her to push and walk around with it. One of the activities Marley enjoyed was "shopping". We would place different objects throughout our home and push the cart and pick them up and when the cart was full we would drop them off at "home", in her room. Sometimes the game would last long enough to get all the way there but again sometimes she would figure it out and know we were working her out. This activity allowed Marley to walk assisted and work those legs in bending down to pick objects up and put them in her cart also giving her more than just one task to work on. With a lot of hard work on her behalf, patience and consistency Marley has always been able to accomplish and exceed the goals set out for her, they may not all happen right away but again with consistency on our part along with routine she is able to do everything and much more. We are all so proud of her, she has come such a long way and is now walking on her own more and more as the days go by her scooting/crawling on the ground has become something we see less and now she is just walking her little legs off. A big girl indeed 

Sign Language 
Now that you have heard Marley's gross motor adventure let us talk about her communication skills. Marley has always had a lot of love for books. I wouldn't call it an obsession but it's an extreme love for them and she may not let you read every word of it but she will sit there for hours reading it to herself or just flipping through the pages really fast and moving on to the next. When speaking to her even as an infant she was always so attentive, babbling and listening to everything anyone had to say. Along with many things delayed in our kiddos communication is also one of them and so Marley may not be able to form sentences for years so what better language than Sign. A beautiful, amazing language that I have come to love more than I ever thought I could. After finding out the benefits of ASL I took it upon myself to take a few courses in it at my local community college and 3 semesters in I look forward to continuing on in the future. I've always had love and a fascination for ASL and was beyond excited to get a fire burning to finally get involved with it, but back to Marley, I couldn't think of a better way to ease a potential frustration barrier or help her any better than to teach her an alternative way to communicate. Since she cannot get things out verbally she is able to tell us exactly what she wants with the use of her hands and slowly she is starting to pick up on actual words. She may not be able to form sentences but with the use of simple signs for example water, cup, food; she is able to tell us what she needs. I am excited to continue teaching her ASL even after she is verbally communicating and I am happy to share that to date she has over 65 words. Marley is taught by repetition and consistency. I would show her a picture of the object or the actual object and then repeat the word and the sign simultaneously, she has always had the skill to pick up on the word and they all just went on from there. At times she would enjoy the Signing Time videos but she is mostly a hands on kind of girl but every little bit helped. Below is a video taken some time in April of this year of Marley showing most of the signs she knew back then, we didn't hit them all and as time passes her knowledge and skills increase by the day. In the video it shows her skills at 16months, the opening page says 7 months as a mistake I made while forming the clip and I haven't figured out how to fix it so excuse my mistake and enjoy the few minutes of Marley showing off. 

Marley's Signing Video

I didn't touch base on her fine motor skills or eating much but I'll just give you a quick low down. Marley has always been an amazing eater and being the stay at home mom that I am Marley's meals were always 100% organic. I would steam and puree everything that baby ate and when it came time to make the food with a thicker consistency it was never a problem. Finger foods became a pro food eating experience, it's like she had that little pincer grasp within seconds she loves food so much. We did run into a chewing hiccup where it didn't seem like she was chewing any of her food but as soon as Tanja introduced a pickle Marley had it down so fast there was no need for an OT really.
I also wanted to discuss the "we" when I write. Everything Marley does she does it on her own time and on her own free will "we" might be the ones guiding her along and teaching her but she is the one that deserves all of the credit because she is the one learning and putting in all the work to get where she is now. I don't want it to seem like no one else deserves the credit but I'm sure you know what I mean. I appreciate everyone that has helped her every step of the way. Now the "we" includes everyone in Marley's life that has been there for her including her therapists, friends, and family most of all she wouldn't be able to learn all that she knows without our help and support so thank you all for all that you do and still continue to do and you know who you are. :-) We love you so much and appreciate everything you have done in our adventure that continues on today. I can continue on and list the many beautiful people that have been there and continue to be a big part of this journey but you know who you are I mention this again and so Marley has nothing but wet besitos for you all. 

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