Explaining my "big babies"

Yesterday we had a family friends birthday party to attend. It was for a little girl who was turning 4 years old. We all got ready for the day and headed out. When we got there we all single filed in only to realize how much space we actually take in someone else's home. Gav man and I settled in with a seat in kitchen with his chair pulled up along side mine while my husband socialized with the other dads and the other kids all played in the other room. Every now and then the birthday girl would make her rounds explaining to the party that she was the guest of honor and that all those presents in the corner were hers.

Every few times she made it to Gavin she would say "how old is your big baby?,"  "you are such a cute baby," "don't slobber on my toys baby Gavin." I let it go a few times and waited until she wasn't distracted and explained to her and the other kids that Gavin wasn't a baby. He was actually 2 1/2. He was a big boy too. She looked at me very confused and asked "well why is he in this?," and "why can't he get out and play with us?" Though it still breaks my heart that Gavin can't just jump out of his chair and run around with the others like Gabe can, I simply explained that every person can do different things. I simply told her Gavin's body doesn't work as well as hers does. Every child and adult is different, we all might look the same but we all have different abilities. Some of us can sing, some of us can paint, some of us can drive cars, and some of us can walk. After this she quickly scurried away to round with the other guests. After our talk she kept coming back offering Gavin new toys saying "You are such a big boy aren't you Gavin?" and "You are big and tall!"

Gavin

I got a few looks of pity from a couple parents and a few dodge glances when they looked over towards Gavin because it just frankly makes people uncomfortable to approach me or him like I am parenting an alien. I finally struck up a conversation with one mom who looked completely uncomfortable at first but once found out my twins cloth diaper, have the same pooping in the bath tub issue as her 2 year old son, and honestly have all the same developmental issues, quirks, and developments as her son seemed to relax into a normal conversation. Gavin and Gabe don't use oxygen. They don't have trechs. They don't have feeding tubes. They don't have severe vision issues. They just have problems telling their bodies what to do physically. They have the same mental capacity as any other 2 year old toddling around and jumping off the couch. Only they can't just off the couch, hop on one foot, Gavin can't sit on his own or stand. Gabe trips himself when he tries to run. Gavin is slow to speak but if you give him the chance can say every word and sentence, eloquent Gabe can. They are the same as your toddlers they just need a little extra time.

Gabe

My kids, family, and friends and their kids have all seen Gavin in a wheelchair or seat of some sort since he was an infant. Questions like this don't often come up when we have gatherings with people we see often. My husband reassured me that there is no right way to explain it to a child and that I did a good job trying to put it in terms that she could understand at 4 but it hasn't left my mind since we left the party. I don't have a go to answer and I know that as we start to do more group activities with the boys with children their own age the question is going to keep coming up. In small town Illinois where there aren't many children in wheelchairs or with servere physical disabilities like Gavin or even mild ones like Gabe, they just don't see it or understand. I suppose it's time for me to hit the web and see how other parents handle this. I have seen plenty of books for children with disabled siblings but my children have never viewed Gavin and Gabe as different. They just are who they are. Never has our now 8 year old ever questioned it aloud and our three year old includes them they Gavin's wheels are just funky looking legs.

They will always be my "big babies" and I am absolutely sure when they are big enough to understand they will tell strangers themselves that they aren't big babies. They're my superheros.

Welfare (Special Needs) Parenting

Nothing is more embarrassing for a parent than to admit that you cannot provide for your children by yourself. You just don't have the resources, time, or financial ability to provide everything that your child needs. Being a special needs parent on welfare is an entirely different monster. Not only is there judgement because you can't take care of your child on your own but there is the stigma that you brought this child with his unique medical issues and physical flaws into this world and couldn't take care of them. You get the eye rolls when you are in the check out lane by yourself using 6 of your 30 WIC coupons you get a month and you are holding up the line. You get the comments about why you had more children when you couldn't take care of the ones you had. Or when your children are with you, its the people who are trying not to look at your child in his wheelchair and plaster on the polite smiles on their faces because they feel sorry for you and they think you want their pity. You get the second rate equipment because Medicare just doesn't cover all the bells and whistles.

Half a months worth of WIC for three children a month

 Sometimes when things are especially tight you have to feed your children those foods that you know will upset their stomachs or make them get a bright red rash across their face because it contains artificial dyes and coloring because you just can't afford the organic or the all natural version. You pump you kids full of sodium and enough sugar to cause diabetes by the time they are five because the Hi-C fruit flavored "juice" product is cheaper then the Juicy Juice. You have to make choices that you know are not in the best interest of your child because it is all you can supply at the time. 

Those months when things are so tight you think to yourself why did I buy all these boys for them at Christmas when I could have saved the money and paid the electric bill on time the last three months. Those past due notices and grace periods fly by and you are wondering do I pay the bill before they shut off our service or put the money in the gas tank to take them to their therapy or doctors appointments. You skip family functions because you have to save that 1/4 of a tank of gas to get to the doctors appointment that they really need to go to because you have rescheduled the last two appointments (for the same reasons) and you know you will be dropped from their practice and have to find a new doctor even more ridiculously far away to move them too. Or not being able to seek the latest therapies, getting the newest equipment or even better equipment suited for your child's specific special needs. Your son stuck his coat in a sticky mouse trap and you had to throw it away because it wouldn't come off and two of your kids now share a coat, one wears the outside and one wears the inside lining. You just have to make sure they are wearing long sleeve shirts and sweatshirts underneath so they absolutely stay warm.

Your toddlers don't understand the concept of money and when you tell them you don't have enough money to go buy the play dough they've been begging for for weeks at the dollar store and they find a quarter and cry to you "but we have money!" You research moving saving options and how to make cash fast options until you are blue in the face. You talk about disconnecting phone lines until you realize the doctors offices and department of public health, early intervention, family all have to be able to get a hold of you some how. You tell your kids they can't have a second snack because you have to make your food last all month. No or not right now seem to be the automatic response to just about everything.

Living a life of poverty is tough, especially in a family that's fairly well off. It is embarrassing to have to hide behind your problems, make excuses, and avoid participating in social outtings with family and friends. It is hard to get ahead when you are so far behind. Every option out there is just about impossible unless you win the lotto or win publishers clearing house (do they even do this anymore?). You can't move forward in life without money and without money to move forward you are stuck. Stuck skipping college (that costs money), stuck trying to find a new job (gas, clothing, spending time job hunting costs money), buying a house for yourself requires a job and money, buy that nee handicap van you need with the chair lift or the ramp in front of your house so you don't have to carry the wheelchair up and down the stairs costs money. People just avoid the elephant in the room. Wouldn't you?

There are definitely perks to being a welfare parent sometimes. You of course get to spend copious amounts of time with your little ones. Seeing all the smiles, tears, firsts, and accomplishments during all the quality time you get to spend together. You learn to become inventive. You are definitely more creative when it comes to finding ways and recipes to feed your family. You learn to take a few extras and a little of this and create a new family favorite that you would have never though of before. You learn to accept and be grateful for the little things. My kids and I get so excited to wait for the mail everyday and see what new free samples have arrived or if their new free book for the Dolly Parton Imagination Library has arrived yet. We have learned to love trips to the library, for the books, free movies to rent, and their huge playroom area. The kids cry every time we have to leave. We spend a lot more time outside playing in the yard, working on our garden which helps supplement our food income. In the Spring, Summer, and Fall our food costs are always so low we have a little extra money to get the boys good birthday gifts for the trios birthday in August. I have learned that sometimes being cheaper is healthier especially when it comes to cleaning products. Sometimes the frugal choice is the BEST choice, not the ONLY choice. I have learned to make homemade cleaning products that are not only cost effective but are chemical and carcinogen free! If we weren't below the poverty line I don't think I would have every considered cloth diapering my children and dealing with their poopy diapers in the wash or hung up that clothes line that saves us almost $75 a month off our electric bill in the summer. I would have never done the research to know that using the crock pot is way cheaper than running the oven and that adjusting the thermostat so that we are always just a little warmer in the summer or a little cooler in the winter would really add up! It has also showed me who will actually stick around through thick and thin. It has given me an appreciation for the way things were when we were growing up. I totally understand now why we had the car with no radio or the one that died in the rain. A car is a car and its job is to get you from a to b. The brand of possessions is totally useless to me as long as it has enough quality to get the job done. I have learned to be a thrift store, used, generic junkie!

Being a welfare mom has made me a better mom. It has allowed me to open myself up to gratitude for what I have, the things we are blessed to be gifted with, and the things that really matter, my family. I have learned more about love and the ability of people. It has given me a new point of view on life. I have learned to find joy in the ordinary and love in all the right places and people!