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 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.
Thank you for your support, lets keep the growth going. Tell all your friends to come by and check us out here at www.madformaddi.com or at our Facebook page www.facebook.com/madformaddi .
Having a child with Down syndrome is just like being a parent of a “typical” child most of the time they only time I really notice a difference is when there is something “wrong” with Maddi. She runs around and plays, she likes to watch cartoons, she loves music and dancing, and of course she bickers with her sister. It isn’t until we have to go to the Dr. or a specialist because there is something “wrong”.
When Maddi was born we knew that she was going to have to have open heart surgery to repair her holes in her heart, what we didn’t realize is that because of those holes Maddi would have a lot of issues with feeding. It all started with her first feed, my wife felt that it was important to try Breastfeeding. Now I want you to imagine that you are feeding your newborn baby and they start to turn blue, well that is what happened. She was promptly taken to the NICU. We were told that because of the holes in her heart coupled with her low muscle tone that is why she was having trouble feeding. According to an article I found at http://www.dhg.org.uk/information/feedingproblems, “Babies with Down’s Syndrome have a tendency to early feeding problems possibly as a result of poor muscle tone, and babies with a heart problem also tend to have problems as they tire easily when feeding. So babies who have a heart defect and Down’s syndrome have two things making it harder for them.”
When we left the hospital with Maddi after she was born she had what is called an NG Tube, (Nasal Gastro Tube), and had to use that till she was about 7 months old. For those of you that don’t know what is involved with this type of tube I will describe it for you. So you have this length of clear plastic tubing that is fairly small in diameter that has an adapter at one end of it. Now, starting with the other end you measure from the bottom of the ear lobe to the nose, then from the nose to right above the belly button, and mark that spot with a permanent marker. That was the easy part. The next step is one that not everyone can do; my wife always had me do it because it didn’t “bother” me, truthfully though it did “bother” me. Next you take the end without the attachment and coat about the first 3-4 inches with a medical lubricant and insert it through the nostril and down into the esophagus ending in the stomach. Now imagine trying to do this to a baby that is crying and struggling. This has an effect on you, there is your child and you are causing it discomfort. It sucks! Although I have to tell you something that I have remembered and use to this day. My wife kept telling Maddi she was sorry for having to put the tube in her nose while we were learning how to do it in the hospital. The nurse looked at her and in a very serious voice said, “Never apologize for doing what is necessary to care for your child.” So for 7 months we had to do that on fairly regular basis, along with mixing her food daily, and flushing her tube every time she was fed. It gets really old after a while. Once she was 7 months old the doctors determined that she was big enough to put a G tube in her, this meant yet another surgery. To do this the surgeon sews the stomach to the abdominal wall then creates a hole in the stomach and inserts a tube that has a plastic balloon at the end of it. The balloon is filled with a predetermined amount of water that “blows” it up; this is what keeps the G tube in place. Maddi had this G tube till she was 3years old. It is not an easy thing to use and manage, you are constantly worrying about; the tube being pulled out by accident, or the looks and comments you will get when you go into public, the lack of sleep because the pump alarm is going off in the middle of the night. I don’t know how many times we had to get up in the middle of the night because the tube that connects to the G tube had come undone and Maddi and her bed would be soaked. There were many sleepless nights.
The most frustrating part of all of it for me were the Gastro Doctors. We had very regular weigh ins and checkups. Some of the times it felt like we were being scolded or told what to do with OUR daughter. If any of you know me, you know I don’t like being told what I can and cannot do with things that belong to me, that probably isn’t the best wording but it’s the best I can come up with. It was a very long, hard fought, uphill battle to finally get the ok to have the G tube removed. Part of the delay was that the doctors didn’t want to take the tube out and her end up needing it again, which would require another surgery. I understood what they were saying but towards the end we kept telling them, she doesn’t need it anymore. They finally relented and sure enough since they took the tube out Maddi has not stopped eating. Don’t get me wrong, she has periods where she doesn’t want to eat but for the most part she will eat whatever you give her.
I am going to be real honest in this post. Some of this may be hard to read but it was how I was feeling at the time, and I was always told that your feelings can never be bad it is how you express your feelings that is bad or not. So that being said, here we go.
My wife, Liz, and I wanted to try and start a family shortly after we were married. She always wanted to be a mom and I have always wanted to be a dad. So needless to say we were ecstatic when we found out that she was pregnant, I am not going to say we were pregnant because let’s face it being pregnant affects the woman more than the man, but I digress. I was on cloud nine; I was going to be a dad. Then the day of our first ultrasound came and everything changed forever. Looking back I should have picked up that something was wrong when the ultrasound tech left at the end of the ultrasound to “consult” with the doctor. After what seemed to be an eternity the doctor came in and told us that our baby had what is called a Cystic Hygroma, which is basically a sack of fluid that builds up around the back of the neck of the fetus. He then went on to explain that it could be a sign of the baby having Down Syndrome, but that further tests would be needed to be determined, and a lot of fetuses that have this Hygroma don’t survive for long. So we were then referred to a Geneticist. HOLY crap that is a lot to drop on new expecting parents at one time. Not only were we not sure that the baby would make it but if it did there might be something wrong with it. That is so not what I wanted to hear. I remember going to work after that ultrasound and being sent home because I couldn’t keep my shit together, all I did was cry in the back room. So after we got over the initial shock we ended up going to see the Geneticist so that we could learn what a diagnosis of Trisomy 21, Down Syndrome, meant. I remember thinking I was going to be the parent of child that was the “R” word, that word has been removed from my vocabulary that is why I didn’t actually spell it out. What are people going to think about me, they are going to pick on my child, you know things like that. Yes, I know I was being selfish at this point. I have to say, during the early stages of the pregnancy a lot of the different health professionals kept asking if we were thinking about abortion. I then found out that roughly 90% of pregnancies that have a Down Syndrome diagnosis are aborted. Even though I was not thrilled about our situation, abortion was not even an option in my book. I was not raised that way. We would face whatever came together. For the sake of space I will skip towards the end of the pregnancy . Besides a heart problem that we knew that would need to be fixed after Maddi was born the rest of the pregnancy was fairly uneventful. I do have to admit that during the pregnancy I kept my “distance”, I didn’t really develop that bond that a lot of parents do. Then Maddi’s birthday happened. The minute I saw her, everything inside of me changed. I often refer to it as a light switch being flipped. I knew that this precious PERFECT little girl was meant to teach me so very much. To this day I believe that she has taught me way more than what I will teach her. This is why I am sharing, so that she can teach the world. She is one of the most pure, loving, and happy people I have ever had the pleasure to know. I thank GOD that he gave me the privilege of being her father.
First of all thank you for stopping by and taking the time to read our blog. We hope that we are able to enlighten people as to the beauty and diversity that people with Down Syndrome posses.
Our team is an extension of our family, and it is starting to grow. The star of the team is our daughter Madilynne Small, commonly known as Maddi. I am Maddi’s dad, my name is Shawn, Maddi’s mom is Liz, and Maddi has a younger sister named Bailey. Since I haven’t asked people if it is ok to use their names I will just describe some of the other members. There are an assortment of “aunties”, there are a couple of actual Aunts, her Godmother, and some of her wonderful therapists and teachers, and countless others.
I am new to this blogging thing but I swear I will get better. I plan on having different “guest” bloggers on a regular basis. I want people to get a sense of how others have been affected by their experiences with Maddi or people with down Syndrome in general.