I thought I would take some time to answer some questions and share a bit about what I have learned for moms and dads who are just starting their journey into the world of special needs and medically fragile parenting.
One question I am often asked is, would I do prenatal testing if we did it again? Well, I am pregnant and due any day now. We choose not to do any testing and have great support from our new OB office who doesn't look too hard for things on ultrasounds. I do worry sometimes that there might be a DX that we will be surprised with the day of delivery. Down Syndrome doesn't scare me as much as all of the other things I now know could happen, but for the most part this has been a very nerve free pregnancy and I appreciate that!
Now, on to my "manual' for new parents on things that I have learned and some tips and tricks I have learned as well. These opinions are of course just that, MY opinions, so other people may experience it quite differently.
- It gets better - The worst part about the prenatal diagnosis's (Down Syndrome and heart condition) was the actual diagnosis. I would be lying if I said I wasn't devastated. However, the second her giant eyes looked up at me from my chest, I had nothing but love for her. People say things like "you are so strong" to be able to deal with all this. Which, I appreciate the compliment as it was intended, but I think that every loving parent with the resources that I have would do the same. She's my kid, you do what you need to do for them.
- Grow thicker skin - The second worse part about everything is dealing with other people. This came in a way that I didn't expect. I spent a lot of time preparing for mean people and what I would say if they called my kid names or said mean things to her. Perhaps this may happen someday but I have NEVER in the 20 months she has been alive met someone on the street with anything less that kind intentions. I feel very fortunate for that. The well meaning comments DO ware on me at times though. Most often I get "she's so tiny"! What I want to say is "what? you think so? should I take her to the dr.? I hadn't noticed". (Her eating and growing has been something we have worked VERY had on and we are VERY aware of). However, I learned early that I need to take such comments with the spirit of kindness in curiosity that they were intended with or I will become very bitter. Occasionally people will ask questions like why she doesn't walk yet or why she doesn't hold her own bottle and on days when I feel like telling them that she has Down Syndrome, they will go on to tell me about their great aunt's cousin's neighbor who also has DS or who has Autism and try to make comparisons that are not there because 1. They are different humans we are taking about and 2. The know basically nothing about the person they are talking about. The last thing in this category that drives me nuts is when people tell me things like "oh, those Down's people are so loving and kind and nice". I joke that I want to send her to pick pocket school just to prove a point. I feel like my biggest fight as of lately is to instill in people that my daughter is an individual, she has DS yes, but that doesn't mean she IS DS and that doesn't mean that she and everyone else with DS are the same. To summarize this point in one sentence, I would say to "take comments in the spirit they were intended, so that you can reply in a loving spirit when you have an opportunity for a teaching moment".
- Unless you are dealing with a medical professional - This. One. Is. Huge. I am shocked at how many medical professionals see her as Down Syndrome and not an individual. Your mama or papa bear instinct should lead you on this one, but one way to tell is if the doctor comes in at tells you how all "Downs people" have a certain trait before even looking at your child. We have gotten second and third opinions until finding someone that will first look at my daughter, then use the fact that many people with Down Syndrome may have the same issue. One example is that 2 ENT specialists we have seen have have come into the exam room and given us a plan on how to treat my daughter by getting tubes, removing adenoids and later tonsils as a treatment plan, because all "downs people" have problems with them. After they finally examined her, they both said her tonsils were actually not that large. Our third opinion, after examining her before making assumptions only recommended tubes. I have found that in most cases, she gets better care from some doctors and worse care from others because of her DX. It is a pain to find the doctors that care about her, but once you do, it makes your life so much easier.
- Find a good primary doctor - We were super lucky with this one as the Dr. that saw us in the hospital has been FANTASTIC! If she was not though, I don't know what we would do. She writes me multiple referrals to see all of the specialists when I didn't like the first two we saw. She writes me prescriptions for over the counter medication, just so I can save $15. She jumps through the insane hoops our insurances makes us go through. She LISTENS to me and trusts my mama instinct. She is not afraid to tell me she doesn't have an answer to my question, but looks into it and gets back to me. She sees my daughter as an individual. Down Syndrome is a consideration when making decisions, but she ALWAYS looks at my daughter as a whole and looks at HER instead of what the charts or textbooks say.
- Don't stay with someone just because you like them - This is a lesson I have recently learned. We had some great people on our therapy team who LOVED my daughter and really cared about her, but when it came to getting her to do something and learn new things, it just wasn't a good match. We ended up trying a new therapist and the difference has been astounding. She and my daughter just work together and we are making SO much progress.
- Get connected - We are so lucky to have a great community of people who have kids with Down Syndrome here, but if you are not so lucky look online. These people have been there and done that and can really guide you through the system. Since most of the people in our group have school aged kids, I sometimes feel like I get more advice for my son than I do for my daughter. I also found a facebook group for the hospital that my daughter had her heart surgery at. While we were at the hospital I got to meet 4 of these families (that were there at the same time). We are facebook friends now and it is so cool to watch their kids thrive as well!
- Get an organizing system that works for you - The amount of paper a kid with special needs and/or medical needs generates is insane. It will consume your life and your counter tops, but when you need it, it will be no where to be found. You need to get a system that works for you. I am super lazy when it comes to organizing papers and need a system that accommodates that. Ours is 4 parts.
- First we have the binder. We have a small house and limited storage space with a toddler who can get into anything kept below waist level, so the binder lives on our fireplace mantel. It goes to every doctors appointment that I remember to take it to, especially if we are seeing someone new. Basically anything that I think I may need to reference again goes in here. I store them in plastic slip sheets so I don't need to worry about 3 hole punching things and I can store multiple sheets in one cover. Here are the tabs that I have:
- Before the tabs I have a piece of paper that I write down questions I want to ask doctors. I also have a business card holder and any things that I need to deal with go up here as well.
- The first tab is all of her Well Child info. At every visit we get a sheet that they write her height and weight on and milestones. When I get a new sheet, I put it in the same slip cover in front of the old one. We also get updated immunization sheets that I put in another slip cover.
- The second tab are test results. These have come in handy many times when seeing new specialists. Any bloodwork results (I usually have to ask for theses) and things like hearing tests go here. They have also come in handy when dealing with the insurance company. I also keep a DOWN SYNDROME GROWTH CHART - This one has been huge for us with all of our weight gain issues. My daughter is an entire growth chart curve below the standard growth chart. Most specialists don't have a Down Syndrome growth chart handy and freak out when they see this. There has been more than one occasion that I was expecting Child Services on my doorstep after refusing a feeding tube. Having and keeping my own growth chart has really helped to show that yes, she is on the Down Syndrome chart and yes, she is more or less following her own curve.
- The next tab is for therapy. Her annual Individualized Plan has a pocket as do each of the disciplines (OT, PT, Speech) because she gets a slip for each visit. The newest slip goes in front.
- Insurance is next. I have a few copies of our insurance cards here because they ask for them at the doctors and it is nice to just have the copy to give. It is also nice for me to reference when I forget to grab my wallet before sitting down to make calls. I also keep any reimbursement forms I might need here. I have one form that is a pain to fill out, so I made a copy of that form the last time I filled it out so I can reference it for the future and don't have to call the pharmacy to find out what the "Rx serv. ref" number is again...
- Medications - The original plan was to keep the inserts from all current medications she is taking here, and if the binder gets too full, I may do just that, but someone suggested keeping a record of ALL medications she has ever taken incase there is a lawsuit. My list is really incomplete because I never ask for a list of everything she is given during surgeries. However, I do have all of her current ones in there. When we were in the heart surgery phase, I also kept a printout of her current medications, allergies, daily schedule and food intake, likes, dislikes and personality traits. It was great to just give it to the Dr. to reference. However, now we see new people much less often and it is too our of date to keep a printed copy.
- Lastly, I also keep all of Brother's info in here too. His stuff takes up almost no space and has also come in handy because he was small too and that seems to ease the minds of some people who are concerned about his sisters weight.
- Second we have the wall organizer. Our main entrance is in our very small kitchen. Everything would get dumped there and get food on it. I found this organizer at a garage sale and it has helped a lot. It has 3 slots:
- The top one is bills that need to be paid.
- The middle one are things that need to be shredded.
- The last one are things that need to be filed. This is the stuff that I doubt I will need to reference, but should probably save.
- When the slots are full, the shred and file piles move to our basement office into bigger bins (yes, I am that lazy) where they are filed once or twice per year. We have a file cabinet for things we plan to keep long term and accordion files labeled by year for things that we can probably throw out at some point such as insurance Explanation of Benefits and therapy slips.
- Doctorate of Insurance - Insurance is complicated. It is so complicated that most of the people that work there don't even understand how it works. If you are ever bored, call the insurance company with the same question 3 times, I bet you will get 3 different answers. I was spending HOURS a week dealing with them and using all of my cell phone minutes. I would be passed on to multiple people only to be disconnected. I have heard horror stories of peoples credit being destroyed because they owed money they didn't know they owed. We are currently working to resolve an issue of a dispute that is almost 11 months old. One day our of rage, I demanded to talk to a manager. I asked her if she would give me her email address so I could deal directly with her and it actually worked. Life has been so much easier since then. She knows our history, she gets answers and I have it in writing for reference. I can't recommend doing this enough! If the first person you talk to tells you no, call back and try again. She is on my Christmas gift list this year.