Our Madilynne celebrated her fifth birthday this past week. Oh, my God my little girl is 5 years old, where has the time gone. As I look at her, I think about all the obstacles that she has had to overcome. For a while it was one thing after another, but she met those challenges as she does with everything else, a smile and a determination to do it her way. For those people who now Maddi personally, they know that Maddi likes to do things her own way and does not like being “led”, but I digress. Maddi has had to fight since the day she was born, and continues to fight. Most people don’t have to fight for things nearly as hard as this little angel that is only 5 years old. In the beginning it was a fight to live and now it is a fight to do things that “typical” children seem to do with ease. I know I have said some of this before but I can’t help it, the amount of strength this little girl has is remarkable. I am glad that she has a fighting spirit, because she will have to fight for things that you and I take for granted every day. She will not have to do this fight on her own though, she has numerous people around her that will go to war for her. Maddi has a way of making people fall in love with her just by being who she is.
So what does 5 years old look like for Maddi. Well she has had a number of really good things happen. We recently moved to a house in Windham, Maine. It is a nice place that has a back yard, where she can run around and play ball, which she absolutely loves to do. Maddi is no longer in a crib. We skipped the toddler bed and went straight to a big girl twin size bed. She absolutely loves her bed, it was nice to see the huge smile on her face when she came home from school to see her bed and then to be able to bounce on it, that was great. It is moments like that where she is completely happy that I think to myself that the hard times are worth it. She does really well in her bed she has only rolled off a couple of times. She wakes up on her own and wakes us up by playing and banging on the baby gate when she is ready to come out and watch cartoons. Maddi will stay at her “school” for another year, we felt that with everything that has gone on this past year she would not be where she needs to be for Kindergarten. So all in all everything is good in Maddi’s world. She is just like “typical” children her age in a lot of things and is progressing well. As I look back at the last 5 years of her life I thank the Lord for letting our family take care of one of his Angels. She is not mine but instead belongs to the Lord up above. I just get to have custody while she is here.
I know that in today’s world States have a tough job of balancing budgets and determining who gets what money. Historically Department of Human Services, along with School departments usually get the short end of the stick. Due to this there is a small and limited amount of money for the countless programs and services that need funds. One way that the state of Maine could save money would be to eliminate the agency, Child Development Services, also known as CDS. This is an agency that is supposed to help children and families of those with any number of disabilities. In my experience with them they have not done much to “help”.
My daughter Madilynne was born with Down syndrome, and in the state of Maine this qualifies her for therapeutic services under Maine Care. She needs Occupational, Physical, and Speech therapies. These services were first handled by the wonderful people at Home Health Visiting Nurses, due to her being what is referred to as homebound. Once she no longer was “homebound” she had to get her services through CDS. Now let me say that I don’t have a problem with the service providers on a whole, my complaint is with the agency itself. We have had numerous problems with case managers. These problems ranged from miscommunication to a case manager trying to conduct an IEP meeting from my bathroom floor after becoming ill. The agency is divided into districts and who you deal with is determined by where you live. We live in Cumberland County but because we live in a town that is closer to another county we don’t deal with Cumberland County. All of the different districts are all supposed to follow the same rules and offer the same programs but in all reality they don’t. We requested therapeutic swimming from our CDS caseworker at the suggestion of our OT. We were told that CDS doesn’t offer it, but yet we could get it from the Cumberland County CDS office. This does not make any sense to me, how can one office offer something but another doesn’t. Don’t they follow the same policies? I guess not.
I have not had many if any good experiences with CDS. In talking with people on Facebook I have found that every person or group that I have talked with have had similar experiences with CDS. I have not come across anyone who has had anything nice to say about the agency. The agency as a whole seems useless to me. What is their actual job, if they are just facilitators then why don’t the therapists just bill Maine Care or insurance companies on their own? If I am being ignorant or just plain wrong then I welcome anyone to educate me. I do not claim to know everything about CDS, I can only talk about my experiences with them.
I have decided to reflect on the “state” of Maddi as we approach her 5th birthday coming up in a couple of months. In many ways Maddi is just like any other 4year old child with a sibling. She argues and pushes her little sister at times and hugs and dances with her at others. She attends a “preschool” during the day where she has speech, occupational, and physical therapies due to her having Down Syndrome.
In order to be a better parent for Maddi I have researched some of the different developmental milestones and when she will reach them. Unlike “typical” children, children with DS can be all over the place as to when they reach developmental milestones. Maddi did not start walking independently until she was about 3 ½ years old. When she took those first steps on her own, it was an amazing feeling. Some kids with DS walk sooner. The same is true for speech and behavior. Maddi still cannot talk even after having hearing aids have been put to use. Her issue with talking is a physical one, because of her hearing loss. So yea, I know that all children are different and they will do things when they are ready, but I cannot help but to feel frustration and sadness for her. We went to a preschool “graduation” and cookout for the preschool that Maddi’s sister Bailey attends. After the ceremony and the kids had eaten, there was a group of children playing and running. The age of the kids was mixed, some were younger, some her age, and a few a little older. I watched as the kids all ran around and Maddi just stood there trying to grab the kids as they ran by. She seemed happy and was laughing but I couldn’t help but think that she just doesn’t fit in. She looks like a child her age but mentally she just isn’t there. I thought to myself, “will she ever fit in, will she always be on the outside of groups?” I want her to be able to interact appropriately and play and have fun with her peers, it saddens me that she just can’t. UGH!!!
I need to share something with you guys. The 21st of May is Dunkin Donuts Iced Coffee Day. Dunkin Donuts all across Maine will donate $1 from the sale of every medium or bigger Iced Coffee to the Barbara Children’s Hospital at Maine Medical Center. The BBCH at Maine Med took very good care of Maddi during both of her open heart surgeries. The people that work there are very special, caring individuals. PLEASE help us support the excellent work that they do by buying an Iced Coffee on the 21st.
I have been racking my brain for a couple of weeks now trying to come up with ideas for blog posts. I came to the conclusion that maybe I should just talk about an average day with Maddi. Our day starts when we hear Maddi through the baby monitor that we have set up. She will be 5 this summer and we still use the monitor, I think it is more out of habit than anything else. We had to use it for a long time because of the feeding tube alarms and the fact that when she was a newborn she had major heart issues. After I get her out of bed she gets dressed for the day (sometimes we have days where we stay in PJs), and I fix her “shake”. The shake started about 3 years ago while we were trying to get Maddi to gain weight so that we could get her Gtube out. Her shake consists of a 4oz container of whole fat Toddler yogurt mixed with 4oz of Pedisure. Before she can have her shake though she knows that she has to take her pills, one being a heart pill and the other is for acid reflux. If I take too long preparing her shake she starts to get cranky and whinny, but as soon as she gets it she as happy as a pig in mud. So if you can’t tell yet routine is a very big part of our day to day doings. Some of the things that go on probably do not need to happen, like the shake, but because we did it for so long Maddi has become used to it and sometimes expects it.
After Maddi gets her shake in the morning she watches cartoons for a bit until I get breakfast ready. Now I have heard arguments on both sides about allowing your child to watch TV, I do not care about those. Maddi loves the cartoons that come on Disney Jr. like; Mickey Mouse Clubhouse, Sofia the First, Jake and the Neverland Pirates, Octonauts, Chuggington, etc… I feel that these are good shows with positive messages and more importantly Maddi loves them. Here lately we have had things going on as a family on the weekends so the schedule gets messed up when we have to go out and do things, but usually after breakfast Maddi and her sister play with toys or look at books. If the weather allows we will take them out side so that they can walk up and down the dirt road or swing in their swing. Are you noticing anything yet? Her days are just like “typical” (I hate that label) kids. She loves to play and laugh often times she will fight with her sister and then do something sweet like hug her and kiss her. I have to say that a lot of times she entertains me immensely.
During the week Maddi attends Southern Maine Children’s Academy, this is a therapeutic preschool. They cater to children with developmental delays like Down syndrome and Autism just to name a couple. I think that when she is at school she works harder than “typical” kids. I say this for a couple of reasons. First, kids with a diagnosis are not allowed to have naps, this is because the state does not allow any place to bill while the child is asleep. Secondly, Maddi works with a; Physical Therapist, Occupational Therapist, and a Speech Language Pathologist, this is on top of the normal activities that they do in the classroom. By the end of the day when I pick her up she is “toast”, most times she falls asleep on the 15 minute car ride home. Once we get home she watches cartoons till dinner. We eat dinner as a family every night between 5:30 and 6:00 pm. After dinner she gets her “tubby”, and dressed for bed. By about 7pm she gets her evening meds and shake and watches cartoons till 7:30, which is when she usually goes to bed. We do kisses and hugs, I lay her down and turn on her CD. This CD is a bunch of lullabies done by the singer Jewel, Maddi has listened to this CD for about 4 years now every single night.
I hope that after reading this you get the idea that Maddi is just like any other kid, for the most part. She plays, fights, eats, and sleeps just like other children. The only difference is she has an extra Chromosome.
I would like to start by letting everyone know that the Team Mad for Maddi Facebook page has reached a milestone of over 200 likes. It is because of all of you that follow, read posts, and support us that allow us to spread our message. Since God gave us the honor of caring for one of his angels, I have wanted to spread awareness and acceptance for these beautiful people. Our Maddi has changed me right down to the very core of who I am and how I see things, and I believe that she still has so much more to show me and the rest of the world.