I've had this blog in my head for a few days now. It stems from a conversation I had with my sister, as well as an article I read on how to deal with a mom who's lost a child. Both the conversation and the article were extremely helpful to me and I've gained some new perspective on my own life. I've decided not to be quite so hard on myself.
One of the hardest things to come to terms with as a mom is that your child might not be "normal." With some disabled children, you can tell by looking at them that they have special needs. For instance, a child with Down Syndrome or Shaken Baby Syndrome. Those are pretty easy to spot. But what about the other disorders? Congenital heart disease, a lung disorder, a mild form of autism. Those are much harder to recognize. And so, because we don't physically see it, it must not be as difficult, they must not be as needy. Right?
Wrong.
Jaxson looks pretty normal, if you didn't see him on a regular basis, you might not know that he has special needs. The only thing a new person might notice about Jaxson is that his eyes are kind of far apart. Of course, that's after the pins are out. Some people might even notice his scar, but once it heals it's not easy to see. So his special needs aren't that bad, right? I wish.
When I look my Jaxson, I don't see a kid with a disability. I see my baby boy with gorgeous blue eyes and a smile that lights up whatever room he's in. I see an ornery, playful one year old. Sure, he's a little behind developmentally, but it's slight enough that parents of "normal" children would never notice. That's how the mom of a special needs child feels. We don't see the sickness, we don't see the limitations. We see our child as any of our other children, we love them fiercely, we would lay down our lives for them, we believe they are capable of overcoming life's obstacles and we believe that they can do anything they want to do. All children are an inspiration to their parents. Special needs children are no different, and I would argue that they are even more of an inspiration.
It's hard to remember that Jaxson is a pretty sick kid. He's so happy all the time! He loves to play, he loves to smile, his laugh is incredible contagious and he enjoys testing mom and dad to see how far he can push us. He gets swatted on the bottom or hand if he does something wrong. He's smart, really smart. But, as we've all seen, any of that can change in a heartbeat. So, to give you an idea of what some moms go through, I wanted to share the things I do on a regular basis to care for Jaxson.
Every day when I get up, I have to prepare Jaxson's breakfast. Now that he's on Pediasure Peptide, it's much simpler than it used to be. I measure out 5.5 ounces of food and mix with 20mL of water. Prime the tube. Get any medications ready that he needs. Feed him through his tube. That has become quite normal and doesn't even seem awkward anymore. Change his diaper, apply eczema lotion, get Jeffrey breakfast. Somewhere in there I manage to down a couple of cups of coffee. Then it's halftime for Jaxson and I get to hang out with Jeffrey if he sits still long enough. Get Jeffrey ready for school and on the bus. Get lunch ready for Jaxson, follow same procedure as breakfast. Now it's time for one on one time. That means that even though Jaxson thinks we're playing, we're actually doing therapy. Incorporating working on new sounds and tasks with whatever game he wants to play. Sure, it sounds like fun, but after a few hours, it's quite exhausting. Both mentally and emotionally. For Jaxson, right now we are working on me signs and sounds. He's getting pretty good at using signs, but doesn't understand how to use them on his own yet. The only thing he currently says is "mama" and cannot make any other vowel or consonant sounds. We are working on "moo". I also help him with his OT and PT goals. That means working with him on reaching up, picking up a toy form a standing position without sitting down first, standing on his own, grasping small objects with his fingers. Things you don't think about with other kids, Jaxson has to work really hard to do. After that, it's nap time again and I get to pick p our playtime mess, work on whatever I need to do on the computer and make sure the house stays relatively neat so that Jayson doesn't walk into a disaster when he gets home. Jeffrey and Jayson arrive home roughly at the same time, and the rest of the evening is spent with the family. And that's a day with no appointments.
Appointment days are different. Monday we have OT at 9:30, Thursday we have PT at 8:15 and every other Thursday we have Speech at 9:30. Plus any other appointments we have. For example, yesterday we had PT, Cardiology and Plastic Surgery, all before noon. Sometimes we have more than one day like that. It throws off Jaxson's schedule every time. So keeping him on any kind of schedule is nearly impossible. It's days like that that I'm actually thankful for the feeding tube, because keeping him on his feeding schedule is so important. It's taken me up until now to get Jaxson to take more than six ounces. Anytime I tried it before, he would get sick because it was too much food. Getting him enough nutrition is hard enough without having him skip meals.
And let's not forget about the other factors of having a child with special needs. There's the mental and emotional toll it takes on moms and dads. There's the financial aspect of how much goes into caring for a special needs child. Unexpected hospital stays can cost upwards of $100 just in gas for us, not to mention food and any other necessities that come up. Another things I hadn't thought about is the cost of diapers and wipes. Anytime Jaxson gets an antibiotic, he gets horrible diarrhea. So I probably change 10 diapers a day as opposed to the normal 5-6. And I might use three wipes rear change as opposed to one.
In any given day we have to watch Jaxson carefully. Right now, I'm watching him for dehydration on top of everything else. We have to watch his skin color, how much modeling does his skin have and is it because he's cold, mad or is it a circulation problem. We are watching his head for infection, and that's something that will continue until the distractors come out. I have to keep a constant eye on what he's doing because he often tries things that he can't do. For instance, he climbs onto the one step he can get on with the get up, then he'll hold on to the gate and get upset when he can't get down. Or he will fall off the step and hit his head on the floor. Sure, other kids do that, but other kids don't have metal and screws attached to their skulls. We have to keep en eye on his bruises to make sure they go away properly, especially the ones from where he gets poked a million times for one IV. I check his medical record daily, looking for clues as to what his diagnosis might be. I watch his balance, his temperature, feel his head and try to get him to take food by mouth. I clean his head, clean his mic key button, watch his eyes and monitor his hearing as well as trying to keep his hearing aids in.
There is so much that goes into caring for a child with special needs, and I'm sure I didn't even include everything, I do all of these things on a daily basis, so it's become normal and I don't think about it as being something extra.but probably the hardest part about having a child with special needs is making sure that Jeffrey is okay. Siblings of children with special needs are often overlooked and bypassed by most. But the biggest emotional stressor I have is making sure that Jeffrey has as normal of a day as possible. He's only four, almost five, and you would think he's grown. He's incredibly smart, he's super sensitive, and he has a bigger heart than any kid I've ever met. He loves his brother more than he'll ever tell you, and when Jaxson goes to the hospital, Jeffrey has a very hard time with it. He loves to go to the clubhouse, but what he really wants is everyone back home. He gets very emotional and cries a lot. He throws fits for no reason, he talks back and he's getting a nasty attitude with us. Thankfully, this hasn't spread outside the house because he's fabulous at school, but it's something we're trying to work on with him. He is dying to learn and finds documentaries and learning cartoons on Netflix. He can tell you all about an aardvark and whales and dinosaurs. He has an incredible vocabulary and can count to 20 mostly without help. He recognizes numbers off the bat. But he doesn't know his letters hardly at all and Jayson and I are beginning to suspect dyslexia. He also refuses to learn how to write, and he doesn't want to sit down and let us teach him except on rare occasions. He eats like a bird, and we sometimes have to take away toys or fun things because he refuses to eat what he's asked for. I've talked to the doctors about reflux for years, but gotten nowhere. I'm going to take him to children's for his next primary care visit and have his records transferred. I've also got resources for behavioral psychologists and social workers who might be able to help us get him back on track. It's not that he's a bad kid, far from it. It is extremely out of his norm to act like this, so we know something is up but we don't know how OT fix it. We're hoping that with some advice from a professional, we'll get our normal Jeffrey back. The one that listens, only throws fits occasionally, and eats without a fight.
There is so much that goes into being the parent of a child with special needs. Things that most parents never have to deal with and would never think of. I am so thankful that I've found some groups on Facebook to get involved with as well as for all of the support on Jaxson's page. People we have never met are reaching out every day to offer their support and prayers. It means the world to me, but it would mean more if more of my friends reached out personally. Inspired by the article I read on how to handle a mom who's lost a child, here are a few guidelines on how to handle a mom of a special needs child:
1. Don't just reach out when things look hard. Things are always hard. Sure, when things are difficult we need more support, but when things are good we still need it. Those are the times when we can focus a little bit of attention on the other parts of our lives, like having friends and making sure siblings are taken care of. We need support all the time, so send your friend a message just because you want to, not because you think she needs it at the time.
2. Don't be scared. We are scared enough for our kids, we don't need you to be scared too. No one wants to have we child with special needs, but some of us were blessed with them and feel extremely lucky to have them. They aren't contagious, unless you consider their love of life contagious. They are kids too, they just need a little extra love.
3. If you're going to send something to one child, make sure you send something for the siblings. There is nothing harder to deal with than the fit of a sibling who has to watch their brother or sister receive special gifts and treatment on a regular basis while they get none. A few people have sent us things for Jaxson, and we appreciate the ones who have also sent things for Jeffrey. He's in this as much as we are!
4. If she bails on you at the last minute, don't be angry. Some days are harder than others and we just can't force ourselves to do anything else. Believe me, we WANT to hang out with you and get out of the house for awhile. W need those breaks and we crave them. But sometimes it's just too much. We're exhausted all the time, mentally, physically and emotionally. Not only do we need to rest when we've had a bad day, but we know we wouldn't enjoy the time out and we don't want to bring you down either.
5. Offer to babysit. Even if it's just for a couple of hours, parents of special needs kids NEVER get to spend time together. All they need is a couple of hours every once in awhile to go out to dinner or take a walk, just the two of them.
6. Be willing to come to them. It's hard enough to get out of the house when you have a special needs child, but to have to go far from home is even harder. Be willing to meet at a place close to them, or simply go to their home and be there. Adult conversation is desperately desired, and having someone there to talk to is huge.
I'm sure I'm missing a few things, but what I really want to hit on is that we need help all the time. Mentally, emotionally and financially. Most families of children with special needs are on one income, as we are. Government programs help, sure, but not with everything. And not every family qualifies to receive help. So when you see a donation request, understand that it's not because someone is trying to take your money or take advantage of you. Most likely, their situation is similar to ours and they need just a little extra help to get by.
I hope that this helps people realize just how different it is to have a child with special needs. It's a life and personality altering thing. So before you judge, make sure you have all the facts. I was very appreciative that my sister wanted to ask me questions about this. I never really considered all that we do on a daily basis that is different from everyone else. Explaining things to her helped me realize that and I wanted to share my experience and thoughts with those of you that may have the same questions.
Please remember that we have a t-shirt campaign until the end of the month. Tis campaign is not going to bring us a lot of money, but it will bring a little. It is more about raising awareness on birth defects and the impact they have on everyone around them. It only goes until the end of the month, so please get yours soon! www.booster.com/jaxsonsride
We also have two places you can donate money. One is directly on the Facebook page (www.facebook.com/JaxsonsRide) on the donation tab. The other place is Jaxson's GoFundMe page, which can be found at www.gofundme.com/jaxsonsride. Even if it's five bucks, it will help!
And if anyone ever has questions, please do not hesitate to ask! I am more than willing to discuss anything openly about Jaxson or raising a child with special needs. If someone you know wants to speak with me but doesn't know me directly, please give them Jaxson's Facebook page and have them send a message. This is all about awareness and education. Besides figuring out what Jaxson's diagnosis might be, this is my other mission. Raising awareness on birth defects, what can cause them and how to cope with them will play a huge part in the support families receive when they have to go through something like this.
"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference."
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