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.
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 watched Shawn and Liz struggle with themselves as well as each other, trying to understand what the doctors had just told them. Maddi has Down Syndrome. It was evident there were struggles and success. They struggled with their own demons and conquered them, so they could focus on the struggle that was presented to them.
When Maddi was born I watched all of those previous struggles kind of melt away. I watch a mom and dad fall in love with their perfect, precious Madilynne. They were aware of the new struggles they were about to embark on and put on their very brave faces. I saw them get so tired because they were staying up constantly monitoring Maddi’s oxygen levels. I recall Liz crying to me about how scared for her daughter she was. I was watching a mother burn more than both ends of the candle consumed with worry and anxiety about her daughter’s health. I watched a father tend to the every need of his wife and baby. I saw him struggle with how he was going to make it all work for his family. I saw him struggling with how to provide for Maddi and all her medical needs. Looking back on it now, both Shawn and Liz struggled with all of these things. I watched as they were devastated by what was medically going on with Madilynne. I saw them reach their breaking point but never went over the edge. They dug even deeper and found the strength to continue on their journey. Sure they cried, yelled, and did everything a parent who loves their child would do. What they never did was give up. Every single time they were faced with a struggle, they found their way through and grew stronger and more beautiful as persons. I have also been witness to them educating themselves. They are continuously looking for great creative ways to help Maddi flourish. Shawn has found his reason in life. It is to be an advocate for Madilynne and also, to educate people about Down Syndrome. Shawn is a student, an entrepreneur, a full time stay at home dad, an advocate, a leader, and a teacher. I could go on and on. Liz is a superwoman. Pregnant while having a toddler with Down Syndrome. Then tending to that newborn, being a mom that works, going to appointments, and everything else that goes along with it. They both perform quite the juggling act while keeping all their focus on their wonderful family.
I now see a family learning from each other, growing stronger as individuals as well as a family. Madilynne is a thriving 4+ year old full of life. They stood together during all their struggles. They supported each other through the darkest times. I cannot wait to be witness to all the spectacular things in-store for this amazing family. They are a true inspiration to anyone out there that’s having struggles of their own. Know you are not alone and you too will find you inner strength.
I am asking our followers for input. What kind of content would you like to see on the blog. I want this to be a community where everyone has input. So if you have input or ideas please let us know. We are always looking for guest bloggers to contribute.
Before I worked at Maddi’s preschool, I didn’t have much experience with people who have disabilities. No one in my family, and none of my childhood friends had a disability. I started at the preschool working in a classroom that had children with a diagnosis and typical peers together. The kids who had a diagnosis needed some assistance, but did really well. Never having really been around people who have disabilities, I have to admit that some of the other kids made me really nervous. Some could not speak. Some displayed extreme behaviors. Some just cried for what seemed like a long time. I was worried that I wouldn’t know what to do if I ended up working in a different classroom. I worked in the “highest functioning” classroom for 10 months before I was switched to Maddi’s classroom. It was then that Maddi started teaching me one of the most valuable and life changing lessons I have learned so far. Just because someone doesn’t have the ability to speak (yet) doesn’t mean they don’t understand, and it certainly doesn’t mean they don’t have anything to say. It doesn’t mean they don’t know how to communicate. It just meant that I had to learn different ways to communicate. Maddi knows how to talk using some signs, and shaking her head yes or no. Her facial expressions are also one of my favorite ways to tell how Maddi is feeling. Her joy is easily seen by her smile and giggle. On the other hand, a scrunched up nose, squinted eyes, and a slightly open mouth means she probably isn’t a big fan of the activity, such as when she tried touching new textures, or when she saw a puppet. The second thing Maddi taught me is not to feel bad for myself. Maddi has been through so much in her short life so far, and she never complains. Doctors appointment after doctors appointment, being hooked to machines, having tests done, and having tubes and wires taped all over her little body. In the 6 months that I worked with Maddi, she had a surgery for her ears, adenoids, and had an emergency open heart surgery. A few days, or week(s) later, Maddi was back at school, smiling and happy. Although she had some days where she was completely worn out by the end, she just kept on doing what Maddi does, never crying, whining, or whimpering. The only way Maddi ever asked for any extra attention was she would get extra snuggly, which I was happy to take advantage of 🙂 Maddi has more strength and courage than most people I know. And she’s only 4. I hope that through this blog or in person, Maddi will continue to teach people who don’t know someone with a disability that even though these people may look a little different or sound a little different, on the inside they are just the same.
The following post is something that my wife wrote a year after Maddi had her open heart surgery and subsequent pacmaker surgery.
October 26, 2010 at 11:04pm
I have been unable to sleep lately. My mind has been racing of thoughts about where we were a year ago. At about this time we were in the PICU at MMC trying to get some sleep and holding Madilynne as much as we could because we weren’t sure when we would be able to hold her again. Her 1st heart surgery was first thing the next morning. A couple nights before she was rushed to the PICU because she was having such a difficult time breathing. The doctors kept telling Shawn and I that we need to leave the hospital and try to get some rest. Were they crazy??? How can I leave my baby girl who is SO sick, how could I not be there if something happened? I had no intention of going anywhere.
The morning came all too quickly and our families all came to support us and sit with us in the waiting room for what felt like days! As they took Madilynne away to the OR, I remember feeling ok. This was just a walk in the park. Finally the doctor came out to let us know that it was over and it went great. He said there weren’t 2 holes like we had originally thought but my little angel had about 8 holes in her heart. They had to get her settled before we could see her. With a sigh of relief we waited and waited until the nurse came to get us to tell us we could see her.
Finally they came to get Shawn and I. We went in to the room and I just stared at her. She was so tiny in that big bed with more tubes and wires then I could count. Suddenly everything in my chest hurt, a hurt like I had never felt before, it was almost as if I was laying there and could feel every inch of her pain. I left the room as my stomach turned and went to the waiting room. That feeling of ok I had that morning was gone. I lost it! Totally fell apart. I ran out of the hospital and outside were I tried to catch my breath and I couldn’t. The pain was so real! The physical pain in my chest was so intense. I remember sitting out there for a long time waiting for the pain to go away. I pulled myself together and went back inside. I tried to digest what was being said to us by nurses and doctors. I gently touched her, with great fear I might add and then sat by her bed as much as I could. A week later was another heart surgery to have her pace maker put in. More anxiety and more waiting but I must say the 2nd was nothing like the 1st. One day while still in PICU I called the nurse in because I was concerned that she seemed so red in color to me. The nurse patted me on the back and whispered in my ear…”That is what color she is supposed to be”.
I look back at all the pictures posted on here and the comments that went with them and smile. It amazed me that during such a troubling time the support was just as surreal as the surgery. My daughter has been through more in her life then any child should have to go through but she does it all with a smile. She has taught me so much and I am so grateful and proud to call her my Madilynne!
A year later she is so full of life and energy! It is amazing to me how far she has come. Her teeth are almost through and we are so close to mastering sitting. She is still working on the eating thing and getting better at it day by day. Again thanks to all our family and friends for all the love, support, and prayers!