Delay

I am sorry about the delay in postings. My mother is in a rehabilitation facility (physical therapy) and is having several medical issues that are not being addressed properly and without intervention, she could have died. We are still not where we need to be but I met with the Adminstrator today to resolve these. This is proving to be a lot on top of caring for Dear Son. This has been enormously stressful for me. I can honestly say that I have not been this stressed in years. I haven't been able to sleep this week since I have been sick with worry. As a general rule, I am not that type of person but when you know your mother is being neglected and suffering, it's really hard to function. My sister and I are working together on my mother's behalf, which makes it easier.

On a positive note, Dear Son continues to do well. He still has some bad seizures but overall is making some remarkable progress. This week, he was able to raise his chin up when I shaved under his chin. Each time I asked him to lift his chin up, he was able to do it. I was so proud of him and so excited! This has never happened before. In the past, I might ask him to do something and you could see he understood it and wanted to do it but it would take a little while for him to get his body working and then he may only be able to do part of what I asked. Now that he's taking the organic, virgin, coconut oil, he seems to be able to coordinate his mind/body better. I have increased his dose from 1 tsp to 1 tbsp/day and that seems to work better for him.

In addition to moving his chin up, he was able to move his hand out of the way the other day, prior to me lowering the bed rails. Typically, I have to move his hand out of the way, before I lower it. The other day, he moved it out of the way himself. This was huge! I can not explain why this necessarily is working so well for him but only that everything seems to be better. Please note, Dear Son stills sleeps a lot after school and it hasn't changed his diagnosis or anything but he definitely looks better, seems happier and is able to do more things than he has done in the last few years.

IEP(Individual Education Plans): What Should You Do When They No Longer Meet Goals

Today was Dear Son's IEP (Individual Education Plan) meeting. This is an annual event where the parents, staff (teacher, therapists, district) sit down together and go over progress during the past year and set new goals for the coming year. It can be an exciting time and a time to get involved in your child's education. In the early years, I would start a few weeks prior, creating what I thought were meaningful goals for Dear Son and working with the therapists to create goals that I thought would add real meaning to Dear Son's life. This means goals that would help Dear Son do what he wanted to do.

Over the past few years, Dear Son had numerous hospitalizations and has been diagnosed with a progressive neurological disease. During that time, it was a lot of work for him to be able to come to school at all and just make it through the day. Some days he would sleep at school but it was also good sometimes to get him up for the sake of his lungs, move him around and aspire to a somewhat normal life. During this time, it was also apparent that the old goals of putting Dear Son in a stander to help him get stronger and stand, were no longer "appropriate goals". From there, I had to shift the focus to more of a caretaker or caregiving goals. The staff wasn't quite sure what to make of this in the beginning, since they were used to more formal or traditional goals however as we go into the second year of these "caregiving goals", I think they are infinitely more comfortable with them. These caregiver goals were things that the doctors recommended that we do to keep Dear Son well. Instead of therapy goals, I like to call this, "Dear Son's Wellness Plan". This shifts boths the goals and the mindset to that of preserving health and wellness and doing things that help Dear Son maintain the health he has. For example, I have asked his school nurse to perform the following tasks when he goes to school:

• Range of motion on his arms, legs and fingers to preserve mobility and to prevent contractures.
• Massages his arms and feet with lotion while he is in his wheelchair; this prevents edema.
• Listens to his lungs so I know if they are clear or if he is coming down with something.
• Performs chest PT to help keep his lungs clear.
• Go to the mat table for more chest PT.
• Works on endurance for sitting. They allow him to sit up as long as possible and then move him to the mat table to lie down once he verbalizes it or simply after a set period of time.
• Gives him 1/2 can of formula prior to coming home for lunch so he won't be hungry.

I have explained to the group that the two main priorities are: respiratory and leg massage. Since Dear Son can't clear his airway, it's important to perform chest pt daily. At home I use the nebulizer once a day and do chest pt and when he's at school, the nurse performs chest pt. The cardiologist at Big Academic Medical Center recommends leg and foot massage to keep the edema (swelling) down in his legs and feet. I do this daily at home and it makes a big difference. Massaging his feet and legs daily keep the swelling down. Even missing a day makes a difference since you can feel the hardness in his legs. In terms of his throat, when he started getting some congestion, I wasn't clear if it was due to his throat muscles deteriorating and if it was saliva or true congestion so I asked if they could listen to his lungs every day and let me know.

In addition to these things, he participates in the class for morning homeroom and morning exercises. He listens to music and is given sensory items on a tray that he likes to feel and which helps him move his hands. He enjoys things like rice or cooking and mixing things with his hands. These encourage movement. They also use a therapy ball with him and another student to help him continue to move his legs. I talked to them earlier this year about working on his legs and showed him some exercises I was doing with a therapy ball to help keep them moving and active. For a long time, this wasn't working at all, but now, after starting the coconut oil, he seems better able to move and function easier. For his hands, they also have him hold onto musical instruments which he enjoys. All of these things help Dear Son keep some use of his hands.

The school has also offered to help me with any of the tasks that I do at home. It is a lot of work caring for Dear Son 24/7, especially with the medication schedule and giving him medications every six hours as well as starting the early morning feedings plus repositioning him in his bed and turning him over every two hours. Today, we agreed that they would help with his arm splints at school, placing them on his hands/arms. I also asked them about helping me with his oral/motor therapy for speech therapy. Last year's speech therapist created a plan to help him relax his muscles so I could brush his tongue easier. By brushing his tongue and keeping the bacteria at bay, it helps keep him well.

Dear Son also has a bus aide that helps him on the bus. He makes sure that Dear Son has his hat/scarf on when he enters and exits the bus and that he gets on the bus quickly in the cold weather to lessen his exposure to the cold.

Overall, it was a good meeting. By getting everyone involved and having everyone help with his care, Dear Son benefits by getting all of his medical needs met by a variety of people, plus he has fun! His teacher is wonderful and patient. She had Dear Son a few years back so she knows what motivates him. His therapists are working with the nurse to help create meaningful tasks that help Dear Son stay well. They also incorporate his wellness plan into the classroom activities. For example, they talked today on how they do chest pt to the music when they have music therapy in class. This makes it a lot more fun that doing chest pt without music.

Perhaps the most surprising thing at the meeting today was that they told me that Dear Son enjoys sign language. The Social Worker has been introducing sign language to the class. Just words here and there but she hasn't put the words together for a sentence just yet. They say that Dear Son is fascinated with this. Dear Son does not have nor does he have any hearing issues and for all functional purposes, does not have use of his hands. I have to wonder though what he is thinking. I wonder if because he is non-verbal, that perhaps when everyone uses sign language, it may level the playing field. So not only can't he talk, but no one else can. I find it fascinating and wonder what he is thinking. I also love the fact that I found out something new that I didn't know about my lovely Dear Son. Don't you just love it when you find out things about your children that you didn't know?

Overall, it was a great meeting. I feel that Dear Son is getting the best possible care out of his education and that he is in a good spot. I can not emphasize enough how important these tasks are to helping him stay well and I am blessed to have so many people help him achieve these goals.

So in the end, the IEP can be just as valuable when your child has medical needs or has a progressive disease as when they don't. Shifting the focus from goals to wellness still has a positive impact on your child and also helps them be the best they can be. And ultimately, that's the goal of the IEP.

And finally, thank you to everyone for all of the wonderful comments on Dear Son's You Tube video, both on the blog and on Facebook. It was really nice.

Sunday Visitation with Mom

I walked out into the hallway, past the parade of wheelchairs filled with old, dying women and men, and into the lounge area. The nurse had come into my mother’s room to assist her with the bed pan so I took it as my cue to leave the room. I provide enough care to Dear Son at home and it’s hard to take on any more here. I walked into the lounge and sat at the table, turned off the t.v. that no one was watching, and looked through one of the magazines that had been sitting in the magazine rack. This particular therapy rehabilitation center was better than most, in my opinion, because the smell of urine didn’t permeate your pores when you entered the facility. The staff seemed friendly, nice and respectful of the patients that were there. I must say that even after a few visits to see my mother, I remain somewhat impressed with the facility, despite it’s outdated decorating. No one said a place has to be well decorated to be good but gosh, the shadowboxes of the straw hats with silk flowers around them really dated the place. So that’s where those awful decorated straw hats went.

It was Sunday and one of my two days off for the month. Dad takes Dear Son every other weekend, after he works a full twelve hour day on Saturday, so I get Saturday night, Sunday and then Monday morning to sleep in, sort of, or at least sleep in until I have to get up for work. I had slept in until 7 a.m. on Sunday and came to see my mother in the afternoon. Despite my limited time off, I was looking forward to the visit. No one knows better than me, just how long the days can be, when you are stuck in these facilities. I’ve done enough hospital visits with Dear Son to understand that horrible feeling, as if you are never going home.

What bothers me most about these places are the people in the wheelchairs that sit in the hallways. Most of them are sleeping and look like they are propped up in the chairs to die. I suspect that all of the therapy in the world won’t heal them because the emotional depression will kill them first. The lack of caring on the family members part, is evident in these expressionless bodies. It’s sad really. As I walk down the halls I was reminded of the physical therapy rehabilitation facility that Dear Son went to a few years ago. It was an adult facility that had a small children’s ward or group of rooms. The children’s rooms were located at the end of the hall off the main area. There were electronic codes to access the rooms so that the adult dementia patients or anyone else couldn’t access the children. I spent the whole time there with Dear Son as I normally do, but the part that bothered me the most was the walk down the hallway with all of the wheelchairs lined up. The old men and women littered the hallway so much so that there was barely any space between the chairs. As I would walk down the hall towards Dear Son’s room, a few of the men would yell out at me, trying to get my attention. It was a bit frightening I must say. I guess the first thing that came to my mind that it was more like a scene from , “One Flew Over the Cuckoo’s Nest” than anything else. In reality, these were nothing more than very lonely people, some with dementia I am sure ,but mostly, just lonely people that had been here a very long time. It bothered me that no one came to visit these people, but it bothered me even more that no one came to visit these kids. One of Dear Son’s former classmates was in the room next to ours and her mother never came to visit in the weeks we were there. I wrote about it here, a very long time ago.

This time though, it was Sunday. I was here to see my Mom and was sitting in the lounge. This place also does manicures for the patients and my Mom was the recipient of a manicure and dry shampoo the other day, both of which she loved. She raved about how nice her nails looked and how good her hair felt. As I waited in the lounge for the staff to help my mother with her “business”, I overheard another lady talking to her mother. The lady was mid sixties, I’d say, dressed very elegantly in black from head to toe. Her mother, some twenty plus years older, sat engaged, in a wheelchair. The lady was giving her Mom a manicure and talking to her as they went along. She was telling her Mom about the car she owned, a Jetta, and how she recently got a magazine from them on how to "jazz up" her Jetta. She explained that they had floor mats with the Jetta logo on them and how she wanted the Jetta sunglasses that she spied in the magazine. She went on to say that she showed her son the sunglasses when her son pointed out that they weren’t sunglasses but tailpipes for the Jetta that had white circles around them! With that, I let out a big laugh, since I just couldn’t help myself. After all, it was too funny. The women were cracking up as well and they delighted in the fact that I found it funny as well. At that moment I thought about the mother in the wheelchair and just how rich she was. She was rich because her daughter had taken time out of her day to spend with her. Not just talk to her but to laugh with her, have a real conversation with her and to pamper her. Yes, she was rich compared to the lady sitting outside the lounge area, just eight feet away, who moaned every three seconds and never stopped. Pain, perhaps. Most likely, just lonliness.

About that time, my ten minutes or so was up. That’s about the time it takes the staff and my Mom to do her “business” in the room so I returned. Sister and friend were there and the three of us talked some more keeping my Mom entertained. My sister had made a blanket for her, with cardinals on it, my Mom’s favorite bird. My Mom has been at the facility for nearly a week and every day my sister has come with new flowers for her. Orange tulips on day 2, yellow daffodils on day 3, yellow roses on day 4, pussy willows on day 5, etc. Sister and I had been splitting up the time with my Mom, making sure one of us could be there every day. We sat around talking, having some good laughs and overall trying to keep my mother’s spirits up. I knew only too well, that the time we spent there would not be long enough. After all, when you are in a hospital or any facility day after day, there is nothing you want more than a home cooked meal, to sleep in your own bed and to be in your own home.

After a few hours, I left the facility. As I walked down the hall, I saw the same people sitting along the walls. There weren’t as many in the hallway as there were at the other facility Dear Son was at a few years ago, but still, these were people who were forgotten. True, there were people in the rooms that just as lonely and bored, but the people in the hallway bothered me the most. Bothered me, because I knew that this goes on all over the country. As I waited for the elevator, I couldn’t help but wonder, “What the heck were people doing that they were too busy to visit?” I mean really? There isn’t any time in their day to visit their family? None? I try not to be judgmental but gosh, these are some pretty long days. Is this the best we can do for these people?

As I waited what seemed like an eternity for the elevator, I heard the staff member talking to the patients in the hallway. He was a chipper man doing his best to keep the spirits up at the facility. He was trying to get a response from a woman regarding whether or not she wanted a manicure. She said nothing and sat there motionless in her chair. In desperation, he gave her a choice: he said, "Would you rather be dumped in the river or have a manicure?" The ladies laughed at his good naturedness and I knew at that moment that he was worth every penny that they were paying him. The elevator door opened and with that I left. As I dropped off the visitor pass, I counted my blessings. With that, the wind hit my face and cold, damp air shocked me back into my own world. How blessed I was to be walking outdoors, to go home and have a home cooked meal, and to sleep in my own bed. Rich I’d say, yes, I am rich.

Dear Son "You Tube" Video

I received the video of Dear Son at school today. I added in the post below but thought people might miss it. The school linked the video via a private account on You Tube so it's only available via the link. Unfortunately, the video is sideways, not sure how to fix that. The good news is that you can see Dear Son in rocking chair, sitting up with his head up, smiling, laughing and moving his feet rocking the rocking chair. You may remember that in many of his photos last year, he couldn't lift his head. Of course, you'll hear the country music in the background, lol. They have his head propped a bit since he needs some support for the back of his head and the back of the rocker isn't quite tall enough. You can see and hear his teacher in the link. This is pretty amazing to me-I never thought he'd regain the use of his feet again. I mentioned previously how well he was doing since I started him on the organic, virgin coconut oil but you can see for yourself what a difference it made. But the best part is that he is really happy. I just love that. I hope you like it too.

http://www.youtube.com/watch?v=khCTr92BA40

As I mentioned here, I felt that coconut oil was helping Dear Son. I had been using it for a few months when I read about a physician, Dr. Mary Newport who started using it to help her husband with Alzheimer’s disease. Recently, she gave an update on the improvements her husband experienced since starting coconut oil in 2009 and how he is doing today, February of 2011. For more information on coconut oil, you can check out these links on Dr. Newport’s website here.

Pretty Tablescape Inspiration, Family Crisis and Dear Son You Tube Video Link!

It's been a difficult week. About ten days or so ago, my mother was admitted to the hospital for foot pain when she was unable to walk. The diagnosis was Plantar Fasciitis. At the time of admission, she presented with a fever of 102 so they ran some tests and determined she had pneumonia and gave her antibiotics. This was on a Saturday. By Monday, they decided to transition her to a rehabilitation facility for rehab on her foot since she was unable to weight bear, go to the bathroom or take care of herself. She refused and insisted on going home. They set up home healthcare to come the next day and the hospital social worker called me that evening insisting I talk to my siblings and force her to go to rehab.

To make a long story short, they dropped my mother off at home even though she couldn't stand, walk, go the bathroom or take care of herself. I had tried calling her and was unable to get in touch with her for hours. I finally talked to her and she explained that she couldn't move. I couldn't go down to help her since I had Dear Son and don't have a wheelchair van. Well, after my call, since she couldn't stand, she tried to crawl to the bathroom and injured her hand and couldn't get up. She was lying on the floor and couldn't do anything, even answer the phone. When the home healthcare agency didn't get an answer the next day, they called 911 and they came to get her off the floor and put her on the sofa.

After Dear Son went to school, I drove down to her apartment to check on her and arrived ten minutes after 911 had arrived. I was shocked at the condition of my mother. I found my mother sitting in her walker, unable to stand, weight bear and she could barely sit. Her neck was stiff (she had issues with it for a few weeks and had seen her doctor who said it was stress related) and she couldn't move it. She was weak and could barely speak. The phone base was under the end table-she knocked it off when she tried to reach it.

I got her some food and water and asked her when the last time she ate was. She said at the hospital, nearly 24 hours prior. Upon further questioning, she had not been able to go to the bathroom either. She injured her hand trying to crawl to the bathroom and now was unable to use her hand at all. Needless to say, I was upset with the hospital releasing an 84 year old woman who had no way to care for herself. She could easily have died. She had no food or water for 24 hours annd could not access any. She seemed better once she was able to eat and I still had trouble convincing her that she had to go to rehab! All in all, a huge mess. I helped her the best I could then had to leave to get Dear Son. I finally convinced her to go to rehab that night and then called my sister who worked with the social worker and handled it from there. Once she was in rehab, I could finally sleep that night.

Things should have gone better from here on out but didn't. She ended up two days later with the Norovirus that had been going around the facility. In addition, she was diagnosed with pneumonia which the first hospital had diagnosed, then released her and said she didn't have it. Most likely she had it and it got worse when they stopped the antibiotics on Monday. The hand was x-rayed and they said it wasn't broke or sprained and yet it was swollen to twice it's size and purple by Tuesday evening, the day of admission to the rehab (xray was the next day upon my request).

So the bottom line is my Mom is in a rehab facility with a virus, with pneumonia, with a foot issue and can no longer feed herself, hold onto a walker, go to the bathroom and can't even sit up by herself. All in the last ten days. I've been visiting her when Dear Son goes to school and went last night and today.

Anyway, I have a lot on my plate right now so I will take a week or so off from posting. I am very concerned since she is so weak. It is going to be a very long road to recovery at this point. She needs to get over the pneumonia and the virus, get some strength back, have her hand heal then sit up, weight bear and go to the bathroom. At this point, they are attempting therapy however she isn't able to do much being sick. I know from my experience with Dear Son that every day they lie in bed, they get weaker, making recovery less likely. And yes, the first hospital was clearly negligent and there are more details than I can include here.

On a brighter note, I found a few items at Michael's this week and started making a tablescape. I didn't get very far once this all happened but I managed to take a few starting photos. I had hoped to do a "proper" tablescape but it never materialized so this is it for now. Once this gets resolved, I'll have more time to play-I wanted to add a tablecloth, some netting and basically dress the tablescape up properly however I never made it. In the meantime, you can see my inspiration for this table. I found the polka dot jumbo daisies and decided to use them on the plates. I wasn't looking for them of course but when I saw them, they screamed "spring"! For me, these pretty polka dot daisies reminded me of a pretty Easter outfit and black patent leather heels and just basically spring! Anyway, I purchased some black ribbon with white stitching and wrapped them around the Spode Mansard white bone china plates. I topped them with the jumbo daisies. Next, I added a few pops of color with the yellow silk flowers. I doubled layered the place mats, using a silver lame threaded placemat, topped with a black placemat, then layered with a silver metallic charger. My next steps will be a white tablecloth, white netting over the tablecloth with black ribbon ties for the corners so give it some softness. I'll add candles and perhaps some fresh yellow flowers. But here is a picture of it for now.

Kitchen redecorating is nearly done. I got a few of the mail order items in this week so I was excited. I need to get a chandelier rewired and then some new paper for the drawers. I am not sure if I'll have time to take the light fixture in to be rewired right now. I have one other decorative item that should arrive in a few days.

In the meantime, I'll show you the new mongram that arrived this week. I hang my dustpan up on the wall of my laundry room and got tired of looking at the back of a white dustpan every time I opened the door. So I ordered a monogram for the back. At least the dustpan looks pretty with my black and white striped broom (Trying to make cleaning fun, lol.) Anyway, I can't make the ugly apartment vinyl floors look better but at least my dustpan looks good. While I was at it, I ordered some black numbers for my apartment door. I used to have a wreath on it but I felt the whole wreath thing was a bit dated so I opted for a more modern look.

Dear Son is doing pretty good. They took some video at school of him two weeks ago sitting in a rocker and rocking. Once they put it on You Tube, I'll try to share it with you. They are waiting for approval to do so from the school. Dear Son is moving his legs a lot! He even kicked the wall when he was in his bed. I don't think he's been able to move his legs in bed in some four years or so. Typically, he doesn't move them at all, even an inch. In addition, he lifted his right arm up during cooking at school. He hasn't done that in years.

How To Raise a Happy and Healthy Severely Disabled Child-Part III of III

Section V: Advocacy and Compassion-Perhaps the earliest lesson I learned is learning to put myself into Dear Son’s shoes and doing for him and treating him as I would like to be treated. Sometimes this is harder than it looks because we aren’t used to analyzing every tidbit of our day through someone else’s eyes. Also, because they can’t speak, we often may not be aware that they don’t like something so we have to learn to view every action of the day from their point of view. Once we learn how to do this, we have to teach others to do the same thing. And that is where the advocacy comes in. We help teach others how to treat our children well. A side effect of this is that we also help build our child’s self esteem in that they see us fighting for them which sends the message to them that they are important. That’s a win for all of us!

1) Put yourself in their shoes. When you have a child with multiple disabilities, you have to put yourself in their shoes in every situation, so you know what to do. For example, if you are giving them a bath, you don’t want their back to lean against a cold bathtub. No one likes that. This was probably one of the first things I thought of. The list could go on. In essence, be kind to them. Do unto them as you would like to be cared for. Always ask yourself, how would I like to be treated? Or if they are recommending a medical procedure, ask yourself if you would allow it to be done to you, if not, then decline. Lots of people will recommend things, it’s up to you to be the best advocate and gatekeeper of sorts for your child.

2) Make sure they aren’t hungry. When children can’t feed themselves, you have to pay attention to the number of hours between meals. They have little stomachs so often you can’t let them go some 5-6 hours between meals. It’s easy to forget when they can’t tell you. When they are on gtube feedings, it can be hard too. I know for Dear Son, there are days when he wakes up at 3:30 or 4 a.m. If I’ve tried everything else and he still fusses, I know it’s because he’s hungry (he’s on 1250 calories a day) so I’ll start his feeding. I know if he’s hungry because once I start it, he’ll stop fussing. It’s not often that he wants it started early, but I pay attention to when he does. Another example is earlier this year. On school days, I start Dear Son’s feeding at 3:48 a.m. and it’s done around 6:30 a.m. or so. He goes a half day so he doesn’t leave school until noon and gets home around 12:25 p.m. and doesn’t get lunch started until 12:45 p.m. or so. That’s 6 hours and it was too long! I talked to the nurse at school and we agreed that on school days, she’ll give him ½ can of formula at 11:30 a.m. That way, he has something in his stomach until he gets home and I can feed him his entire lunch.

3) Learn to be an advocate for your child. How does this help your child developmentally? Let me give you an example. I taught a Parent Home Medical Organization (Parent HMO, a Dream Organizer product) class at a local facility for the parent support group. One of the mothers explained that the staff was unable to feed her child at school since the child refused to eat for them. The problem was that the child was difficult to feed however not impossible to feed. The mother had come to school to try to help but in the end, the child refused to eat for the staff the next day. Essentially, the child refused to eat at school, day after day, and would come home at 3:30 p.m., run into the house and devour everything she could. This was not right. The child was so hungry that she had to go to school all day without eating anything. The mother and I talked some more and I explained that she would need to go to the school every day at lunchtime (she didn’t work) and sit with the staff until they were able to feed the child. Sometimes, we have to go out on a limb for our kids. Sometimes, it’s uncomfortable. Sometimes, our kids have a lot of quirks like this little girl who didn’t want anyone to feed her but her Mom. But we have to go to bat and make it easier for our kids. It’s not right that the little girl can’t eat lunch every day. And it’s even harder when we as parents are pushed into the uncomfortable role of being their advocate. It can be really hard to stand up for them and if a person isn’t used to speaking up, even harder. I struggled with this in the beginning too for my own Dear Son. What I learned was that if I changed my perspective from seeing myself as Dear Son’s mother to seeing myself as Dear Son’s advocate, it would be much easier. I would imagine instead that I was paid to be his advocate. When I shifted my thinking to being his advocate, it was much easier to fight for anything for my best client. That helped me a lot. Learn to be your child’s best advocate so they don’t have to be hungry all day or whatever the case may be. Children can’t learn if they are hungry. Give your little ones a chance.

4) Set health goals. It’s easy to go with the flow when you have a special needs child. After all, there are so many appointments. Instead of being reactive, learn to be proactive. Figure out what steps you can take when your child begins having issues and have a plan. Set health goals. For example, my goal for Dear Son is to go one year without hospitalizations for pneumonia. I am working very hard to keep him healthy and well and so far, he has not been hospitalized in six months for pneumonia. I have a distinct plan written out on all of the things that I will do to help prevent pneumonia. In addition, work with your doctor to find out what you need to do. For example, when Dear Son sounds congested, I need a plan for the nebulizer-how often should treatments be performed for example.

5) Let them know that you want the best for them and are rooting for them. I have a few catch phrases that I use and I tell Dear Son all the time. They are:

"Where you go, I go." I tell Dear Son all the time that wherever he goes, I go. I use whatever example there is, meaning if he has to go to the hospital or whatever. What this means is that his Mama will be there to guide things, to speak for him since he can not and to make life easier. He always has a big smile on his face when I tell him this. He knows I will make things easier for him. I often follow this catch phrase by using an example for whatever situation that we’ll be in. He always knows I have his back.

"We go together like peanut butter and jelly." I tell him this as if it were meant to be. We are better together. I want him to know that no matter what happens to him, he will always have a guardian angel at his side and that we were meant to stand together. I want him to have no fear and to understand that he is not a burden but a blessing to me and that together we will conquer it all.

My philosophy is this-I want to be the best mother and the best advocate for Dear Son. I treat him as I would like to be treated, if I were disabled. I treat him as if he were the greatest blessing I would ever receive in life, because he is. When people see how you treat your child and that you want the absolute best for them, one of two things will happen: 1) They will get on board and do the best and right thing for them. 2) They will go out of their way to take care of them. Another funny thing will happen, you will always get great service. People are busy in their jobs today and sometimes they have to cut corners. They don’t cut corners for the kid whose mother will be watching over them and whose mother will make the staff accountable. I am not suggesting that you be an ogre or that you are not courteous in any way, but rather, when people know that you are watching, they treat your child as they should be treated.

Section VI-Life Lessons. These are things that have taken me a while to learn but also allowed me to grow personally.

1) Ask for help. You may be confused as to how asking for help benefits your child. Asking other people helps the child and it helps you. It helps you in that it’s less stress since you don’t have to do everything. Less stress for you equals better sleep, better health and allows you to focus on the most important things. For the child, it’s great because it gives them interaction with many people and that’s good for them. Having a lot of people care for them, help them feel loved and cared for. For example, now that Dear Son is older, it’s a lot of work. Dad helps out by picking up all of Dear Son’s prescriptions, buying wipes, accepting delivery of supplies and picking up anything we need during the week, since I can’t get out of the house with Dear Son. At school, I have the nurse who cares for Dear Son, listen to his lungs each day, so that I know if he’s getting pneumonia. I also have them do other things such as massage his legs and other therapies. I have his bus aide help me with his outerwear (clothing) while on the bus. I have talked to him to make sure that Dear Son has his mittens on and scarf covering his mouth before he gets off the bus; I explained Dear Son’s prior history of pneumonia and how he can’t clear his airways, so now the bus aide, gladly helps. The bus driver, knowing Dear Son’s medical history, pulls up in our apartment driveway so that Dear Son has limited exposure to the cold. People want to help but sometimes you have to explain to them what they can do to help you. Asking for help and accepting help are still the two hardest things for me to do but I am finally learning to do both of them a little more, now that he is older.

2) Be willing to put yourself on the line for them. Ten years ago I made a difficult decision. It was really the only one that I could make however it was by far, the most challenging. Shortly after I got divorced, I decided to sell my house and move to be closer to work. I was having difficulty finding younger workers to come into my home (to babysit) that were reliable and that could take good care of Dear Son. I made the difficult decision to sell my house and move closer to my job. My house sold within days and closed a month later. I wanted to take my time to find a home so I rented an apartment. Six months later, my job ended due to a massive corporate layoff. I interviewed for new jobs however they were too far away and would require that I hire people to come into my home and get Dear Son’s medications and get him off to school and get him off the bus. At that point, his medical needs began to change and I realized that even if I could afford to have staff to do these things, that I would never be comfortable with that. What if they didn’t show up? Then what? What if he didn’t get his medications on time? There were so many variables that I finally gave up and decided to stay home with him and work part time. I took a 95% pay cut to do this. Please understand too, that we just don’t have adequate daycare for severely disabled children. Had I had access to daycare like the majority of working parents of normal children, I may have been able to work full time, but closer to home, but being a single parent, my options were next to none. Sometimes, providing the best care is being there. That is just my opinion so please do what works for you. This is the solution that worked best for us.

And finally, it’s easy to become overwhelmed with the care that is involved in taking care of a severely disabled child. It’s a lot of work. I can remember stories from my mother on how hard my paternal Grandmother worked to take care of seven kids after her husband died when my Dad was only two years old. I don’t ever want people to remember me as a mother who had a burden in life. Instead, I always want to be remembered as the mother whose greatest joy and blessing in life was her son. I want my Dear Son to know that he is and will always be the apple of my eye and I hope I radiate to others that regardless of anything that is going on in my life, that my greatest joy is my Dear Son. When we shift our perspective from burden to blessing, we have the ability to offer our children amazing gifts in life. As you go through life with your child, there will be many opportunities where it will be easy to get discouraged. It will be up to you to be flexible enough to see through opportunities in a different light. And lastly, I always try to remember to look at life through my son’s eyes. I try to see what he sees, feel what he feels. When you do that, your own perspective is widened and you are opened to a tremendous internal growth. When I look at the person I was and look at the person I have become, I wouldn’t trade for a minute the new respect and compassion that I have for others. Seeing the journey of the disabled first hand, through my son’s eyes, have opened my heart in a way that is forever changed.

Note: Dear Son is nineteen years old and suffers from seizures, dytonia and severe developmental delay as a result of a random mutation of the ARX gene. In addition, he suffers from a progressive neurological disorder.

You can read Part I of the series here; Part I focuses on laying the foundation and getting organized.

You can read Part II of the series here; Part II focuses on building their self esteem, learning to communicate and mothering tips.

How To Raise a Happy and Healthy Severely Disabled Child-Part II of III

Section III-Building their Self Esteem & Communication-One of the key elements to raising a happy and healthy child is building their self esteem but also helping them learn to communicate. It means helping them understand language as well as finding way to help them recognize and communicate their needs. If a child can not communicate their needs, there will most always be behavioral issues. They need to be able to communicate their wants, their needs, to let people know when they are afraid, when they feel pain, etc. Sometimes, for children like ours, you may see inappropriate behaviors that have nothing to do with the actual need. For example, a child may kick a wall to get your attention so you will change them. The child will most often choose the easiest way for them to get your attention. Do not fault the behavior without first figuring out an age appropriate alternative behavior that they can do easily instead.
1) Talk to them.It can be awkward when your baby/child is small and when they are non-verbal, to talk to them. Often times, there is no response at all and it feels like a one way conversation. Talking to your child is one of the easiest ways to build receptive language which is nothing more than understanding language that is spoken to them. Our children are often in their own little worlds so we need to make our world, exciting and fun so they will want to be involved in it. Your conversations with them should be fun, upbeat, singsong like (helps increase memory) and they should describe what you are doing, or what is going on. If you are getting them dressed, you might talk about putting on their coat and mittens to keep little hands warm (I used to say we need to put on mittens because “little parts freeze fast!”), etc. You would talk about why they are getting dressed and where you are going. You might talk about who will be there and how much fun it will be. Be engaged with your child and talk all the time to them. This helps their language development. A therapist once told me the best thing I could do was to talk to Dear Son. After that, I never stopped, lol. Understand too, that the transition from their world to our world may take a long, long time. We never know what will click with our child. For my Dear Son, all of the talking helped him increase his receptive language. It wasn't until he was in a daycare setting at the age of ten years old, that I can say that he was honestly in our world 100% of the time. He was ten and the kids were pre-school age but he loved it. He loved the action, he loved when kids got in trouble, he loved it when kids played with him, etc. Our world was finally better than his and he was in a good place medically for all of that to come together. My point is that you have to keep trying to get there.

2) Listen to them. Even though your child is non-verbal, they still communicate with you. They do it with their eyes, by looking at something they want, they might do it by vocalizing, they might do it by moving their arms or legs but basically, they do whatever is easiest for them and whatever will get your attention. Learn to listen to them and respond to them to build their self esteem. We all need to be heard and when a child who needs their diaper changed fusses, that’s a very good thing. It means they are aware they need changing. Go and check them and then tell them that you are glad they let you know that they need to be changed. I do this in several ways. For example, years ago, Dear Son would vocalize when he needed to be changed. I would come in and see his diaper was wet, then tell him that I was glad he let me know. What is important about this example is that you want your children to know that they need to let other people know what they need/want and you want to reinforce this behavior. In addition, you want your child to know when he/she is wet or needs to be changed because you don’t want them to get accustomed to not having their needs met or accustomed to not knowing what is going on with their bodies. It takes a certain level of awareness to know when you are wet and need to be changed. Be aware that they let you know in many ways. For example, when Dear Son was a baby, he cried when he was wet. As he got older, he vocalized when he was wet, then later on he would squirm when he was wet. A few years after that he would kick the wall when he was wet (and kick it faster and harder if I didn’t get there fast enough, lol). When he lost his ability to move his legs/feet, then he would vocalize he needed changing. In the past two years, with his progressive disease, he doesn’t have the lung power to vocalize very much so he vocalizes once and that’s about it. It’s very soft so you have to keep the house quiet so you can hear him. My point is this-it may change over time but he still has the awareness. I think that is key. Another example is recently when Dear Son got out of the hospital in 2009 after that long hospitalization. He came home and was extremely weak, sleeping all the time. He might be awake on briefly but I made sure to talk to him and tell him to let me know when he is wet and needs to be changed. That doesn’t mean that I don’t change him or check him to see if he needs to be changed but rather, what I wanted was for him not to lose the awareness that he needed to be changed.

Dear Son in elementary school with his girlfriend, both are non-verbal but their expressions say a lot.

3) Create an environment for success. I am not sure what to call this exactly, but here is the gist of it. For children with multiple disabilities or moreso for children with milder disabilities, the children are classified or fit into particular therapies or classrooms based on these disabilities. Some parents, try to get their disabled child into the highest functioning classrooms or therapies thinking that this is best for their child.

Dear Son and his girlfriend on his birthday at school. Teacher is on the right.

For some, in milder cases, they don’t want the child to “appear” disabled and be in those classrooms. In other cases, I think the parents feel that if the kid is in the higher functioning classroom, that their child will “pick up” the skills. I believe both approaches are wrong. For example, if you place a child in a classroom where every child functions above your child, it may end up being demoralizing for your child. Imagine a scenario where your child is the “worst” at every skill they do in the classroom. Would that help them be successful? Would you thrive in a classroom where you were the worst at everything?

Dear Son and Mr. H at summer school swimming in the public pool. We've been fortunate to have good placements in school.

Imagine for a moment playing racquetball or whatever sport where everyone you play is better than you. Would that really make you better to lose every game? Would it make you better to play with players who are a lot better than you? No. Instead, place your child into a classroom where they are in the middle in terms of abilities.

Dear Son pushing the bowling ball onto the ramp during a field trip at school.

You want there to be some children that have skills above them and some below them. This allows your child to win sometimes by being the best at something. We all need to win in life. You will always be the best judge of where your child needs to be. It may mean you need more information at times to do this.

Dear Son age 3. He started school around this time.

For example, when Dear Son was three years old and entering school, they were at odds about where to place him-did they place him in the school with kids who were severely disabled and couldn’t move at all, or did they place him in a higher functioning classroom? I asked to visit the classrooms where they wanted to place Dear Son and also asked to see a classroom with some higher functioning kids and one with some lower functioning kids. I visited several classrooms and was able to pick the classroom that I thought Dear Son would fit in best. Notice that I followed their recommendations, but just gave my input on where I thought he would benefit the most.

Although Dear Son couldn't sit in a regular chair, he could sit in a rocking chair with a high back and balance his head on the window to look out. He also used his feet to move the chair around.

4) Change Yourself Before You Change Them. When Dear Son was around five or so, I transitioned from part time to full time employment. Shortly thereafter, Dear Son started a new behavior. Every time I tried to lift him out of the car and into his wheelchair, he would bear down and try to sit on the ground. By this time, he was getting heavy for me and it was hard to get him to sit into the wheelchair/stroller instead of the ground. On one particular day, it had been raining and he was trying to sit on the ground. We had been to speech therapy after school and I had just stopped for an errand at the local mall and was running in with him to get some make up. He refused to sit in his chair and wanted to sit on the ground. When we got home that night, I thought about what had happened. I had started working again and my normal routine was to work a long day, come home and relieve the sitter, eat something and then play with Dear Son. That’s a long day for a little boy! Instead, I thought that maybe his behavior had to do with me and perhaps I wasn’t spending enough time with him. The next day, I changed my routine. I came home, scooped him up on my lap and gave him hugs and kisses and talked to him. He scooted off my lap when he had enough and I prepared my dinner. After dinner, I took him out for a long walk. His behavior stopped virtually overnight. The only thing different that I did was to change the order of what I was doing.

Dear Son enjoying a haircut.

Instead of giving hugs and kisses after I ate diner, I did it before I ate dinner (FYI-The babysitter had fed Dear Son dinner before I came home.), The only other change was taking him for a walk or swinging with him on the swing set. I shudder to think that today, many parents would take him to a therapist to get rid of the behavior and more often than not, give him drugs. Learn to listen to their behavior. The actual behavior may not be the issue, but rather, the behavior is the means to get your attention.

His first birthday! Aww...

5) Celebrate who they are! It’s easy to get discouraged as a parent of a special needs child. They are a lot of work and there is always so much to do. It seems like you never get caught up with appointments.
Dear Son at a theater outing enjoying the luncheon. His dress shirt had a special coating that repelled spills which was great to repel his drooling. You can see the dystonic movements in his hands.

It seems like they will never meet and get caught up on their milestones. It’s also easy to get discouraged…you child will never be the smartest, they will never be the fastest, they will never be….well, you know. Enough already! Instead, focus on what they do best and celebrate it. This was one of the first lessons I learned. I remember asking myself that first year, what do I have? What I have is a beautiful little boy, that had perfect beauty. That was the inspiration behind one of my first blog posts called, “Don’t Hate Me Because I am Beautiful”. It’s definitely a must read. Over the years, I learned to celebrate the fact that Dear Son had a great sense of humor, that he had a really good laugh that could start the whole elevator laughing. He had an ability to go into a room and get along with everyone and make them smile. I learned that we are not defined by our disabilities, they are just part of who we are. Celebrate who they are and be proud of them.

Dear Son couldn't sit on his own, but could sit on our sofa with a cushioned back for support.

I always preferred taking photos of him without any wheelchair. I wanted people to see him, not his disabilities.

Section IV-Mothering. Mothering a severely disabled child isn’t much different than mothering a regular child but it throws us for a loop since the child can’t vocalize their fears or their needs. As a result, we find ourselves guessing as to what our kids are thinking/fearing. Another challenge we face is that our child’s developmental age and chronological age can be very different. While other parents face the challenge of their kids growing up too fast, say eight going on sixteen, we face the opposite challenge of our eight year old acting like a two year old. 1) Create ways to reduce stress/pain for them. When Dear Son was a baby, he had to undergo a ton of blood tests and all kinds of hospital procedures. In the beginning, I used his pacifier to soothe him. For lab tests, I started using a musical toy and eventually a musical toothbrush (it was portable and small) to hold up and play while they drew blood. Next, he enjoyed his talking Barney and his Bedtime Barney that played music. He would snuggle up next to Barney when he wasn’t feeling well or was in pain. Today, when he has a seizure, he likes his music on this musical carousel on (he'll stare at it to let me know) to help relieve the pain or he’ll bury his head into his Barney. Dear Son’s Dad and I often sing to Dear Son to help relieve pain for him as well. My point is this, find ways to help reduce stress for them.

Dear Son's nursery, back in 1991.

2) Talk to them about what is going on and try to calm any fears. When I was going in for back surgery, Dear Son needed to stay at a respite type facility for two weeks. I was quite nervous about this since I worried about whether or not he would get his medications on time and I worried about making sure that he would lie on his side at night so he wouldn’t choke on his saliva. I had been talking to Dear Son about staying at the respite house and that I would be coming to visit him and that he’d be coming home as soon as I was better. But the night before, I sat down on his bed to talk to him. I said that I was having back surgery and that he’d need to stay at the respite house but that it was good news since he didn’t have to get anything done! I said that he was just there while Mama went in for surgery. We talked some more about what would happen and at the end, he leaned forward and kissed my hand. He seemed so relieved! When I told him that he wasn’t going to have anything done, he seemed relieved. You never know what they are thinking so you need to think ahead about what they might be worried about and try to calm their fears. When you child is non-verbal, it’s harder because they can’t tell you what they are afraid of or ask any questions, so you need to be a bit of a mind reader.

Bowling in high school.

3) Be age appropriate but sensible. It can be a real challenge with severely disabled children to be age appropriate. Technically, they can lag so far behind in their developmental milestones that it’s hard to forget their chronological age. For example, they can be 8 years old and you are still changing diapers and purchasing their toys in the 12-24 month old aisle at Toys R Us. As a result, it’s easy to think of them as little whether you want to or not. Sometimes, your brain is still registering them as an infant or toddler or whatever. Anyway, when Dear Son was in the seventh grade, the teacher talked to me about Dear Son’s bibs. I had been purchasing the pull over the head terry cloths bibs for Dear Son since he was born. Dear Son never had head control so trying to tie a bib around his neck when he was floppy was not going to happen. As he got older, say after five years old or so, it was harder and harder to find these bibs. That should have been my first clue however I didn’t want to get his clothes dirty. There is nothing worse in my book than a kid with a dirty face or dirty clothes. Yes, there are places that sell bibs for adults and older kids but most of these were plastic and tied about their neck which was hard to do. Anyway, his teacher told me that now that Dear Son was in the seventh grade, that the kids don’t wear bibs. She said that I can send a towel if I like and they would lay it over his shirt. And that’s what we did. It can be hard as a parent when you have a disabled child because you work so hard to find practical solutions to your child’s issues and when you find something that works, you stick with it. Also, because the kids don’t speak and because they are in smaller classrooms with other disabled kids, there isn’t any peer pressure going on and the kids can’t tell you what the other kids are wearing, etc. so you kind of miss all of that. Or at least, that’s how it was for me. Anyway, I was glad his teacher told me about that and it served as an important lesson for me to learn to be more age appropriate. One other area where I was not age appropriate was changing Dear Son. Often, I’d change him wherever I could and looking back I realize that I needed to be more age appropriate and make sure his privacy was secured prior to changing him. For example, if it were a family gathering at Christmas, I might change Dear Son at the back of a room, since it was easier than lifting him to another area. While no one was around, I am sure it would have been a little nicer to take him to another area with a little more privacy than to change him in an area where another child might happen to walk into, etc. For school, I now ask where the changing area is for him and make certain that there are privacy screens, that they are used, that he’s not in front of a window, etc. I also check it out when I make random visits at school, to make sure it’s being done. Sometimes, people forget but it’s up to you to make sure it’s done. One other note is to pay attention to their feelings. I remember one occasion when Dear Son was ten or so and I took him to our local park. It was a hot day so I purchased a small ice cream for him to enjoy. As I went to feed him, he saw other kids his age and refused to eat anything. When the kids left, he allowed me to feed him again. He didn't want the other kids to see him being fed. On another occasion, our family went to a restaurant. I decided to feed Dear Son before our (Dad and I) food came. Well, again, Dear Son refused to eat because he didn't want anyone to see him being fed. I felt so bad...here was this little boy refusing to eat because he didn't want others to see him being fed. Of course, the minute we got home, he devoured everything. We have to be sensitive to their needs. Often times, it seems funny how they can understand some things and not understand others.

4) Be positive and upbeat. In December of 2009, when Dear Son was released from the hospital, we knew that he had a long way to go towards healing. He had a hard time breathing and you could see that something as simple as sitting in a chair was downright exhausting. Dear Son’s Dad and I would always try to be really upbeat when we were around Dear Son. We’d talk to him and try to have fun and try to do anything we could to make it the best day possible. We would sing to him, we would talk excitedly to him and try to make a big deal out of anything that we would do with him. Dear Son has always had a tough life. He’s had severe physical and severe mental disabilities making it tough for him to do things in life. As a result, we work hard to try to be as positive and as upbeat as we can in caring for him. Dad does a great job any time he talks to him. He’s always excited and teasing Dear Son and telling him how fun it’s going to be. I sing to Dear Son every morning and tell him what a great day it’s going to be or talk to him about the fun things they will do at school. My thinking is this-some days, it’s just plain hard for them to get through their day. Being positive and upbeat is just something you bring to the table to help your child get through their day.

You can read Part III here: Part III: Advocacy and Compassion, Life Lessons and the Conclusion of How to Raise a Happy and Healthy Severely Disabled Child.

You can read Part I here: Part I-Laying the Foundation and Getting Organized.

Note: Dear Son is nineteen years old and suffers from seizures, dytonia and severe developmental delay as a result of a random mutation of the ARX gene. In addition, he suffers from a progressive neurological disorder.

How To Raise a Happy and Healthy Severely Disabled Child-Part I of III

Over the past few weeks, I’ve been writing this series on how to raise a happy and healthy severely disabled child. It took weeks mainly because I've had to fit in writing in between my most important job of caring for Dear Son. What started as a simple blog post grew into a series of life lessons and helpful tips that I learned along the way. My hope is that other parents of severely disabled children may find some of these tips useful in raising their own child. I do not profess to have all of the answers nor is my journey far from over. I can only share what I have learned from my own Dear Son and hope that you may find some of it useful in raising your own child.

This series will consist of three parts: Part I is dedicated to laying the foundation in terms of giving your child the best shot at life. It also covers the basics of getting organized and things to make your life easier. Part II is devoted to building their self esteem and communication. We build their self esteem by making them feel good about who they are and by helping them learn to communicate, both in understanding what we say to them and letting them know that they are heard so their needs will be met. Included in this section are tips on mothering-how to calm their fears as well as what their behavior is telling you and finally how we can be their best cheerleader in life. The final section talks about how we can be emphathic to their needs and show compassion towards them both in our actions at home as well as learning to be an advocate and teaching others how to relate to our child. I sum it up with life lessons and talking about the challenge and of raising a severely disabled child and how our perspective can pave the way to a more enjoyable life for ourselves and our children. So here goes...

PART I

Nineteen years have passed, since Dear Son was born. Dear Son, a gorgeous young baby, had a rough start, turning blue in the first twenty four hours of birth and then having seizures the very first day. I remember holding Dear Son and having him turn blue, and thinking that something wasn’t quite right. I asked my husband, Dear Son’s Dad, to call the nurse and he brushed it off thinking that Dear Son would be fine. I persisted and called the nurse…a week later he was released from the hospital and we were sent home, they said he was fine. There were other signs over the next few weeks that things weren’t quite right and finally at around the ten week mark or so, the seizures became more frequent and more apparent and our lives were forever changed.

Back then, I remember feeling woefully inadequate, not sure of what to do or how to do many things. I had a baby that didn’t meet any milestones, not only for the first year, but for a very long time. But the one thing that I knew for sure, what that I loved this baby more than anything and I was determined to do whatever I needed to help him be all he could be. At that time, I wasn’t quite sure what the future would look like, but with all of his challenges I knew that I needed to make sure that he felt good about who he was. I wanted him to have good self esteem. I wanted people to see him first and his disabilities second. I wanted people to love him, to adore him and for him to be happy. I wanted him to give and receive love. I wanted for him, what you want for any child…you want them to be happy and to feel good about who they are.

Fast forward nineteen years, and you can see the results. I have a happy and loving child who is a pleasure to be around, enjoys people, makes friends easily and genuinely feels good about who he is. He does not have nor has he had any behavioral issues. If you were to read over his teacher’s comments on his report cards, you would be hard pressed to find anything negative but instead read glowing comments about what a pleasure he is to have in class, how hard he works and oh yes, that infectious smile. That isn’t to say that there aren’t things that I could have done differently, but rather, that I did a lot of things right.

I thought it might be interesting to share them with other parents of severely disabled children. My goal is that perhaps some of these tips will make it easier for other parents and for their children. In addition, I’ll try to use examples to illustrate the concepts and also try to put them somewhat in the order that I learned them or implemented them.

Section I-Laying the Foundation-In this section, I talk about the key elements for raising a severely disabled child. These tips focus on being in the right place to help maximize your child’s development and to give them the greatest chance for success.

This is the outfit that Dear Son wore on his first Super Bowl Sunday in 1992.

1. Seek great medical care. Around the two month mark, I noticed some odd movements and on Super Bowl Sunday, took Dear Son to the emergency room. He had been having seizures and to make a long story short he was hospitalized for a few days and had an EEG done. The EEG was horrible. It was the first one that I ever saw and there were markings on the paper EEG that looked as if a child had scribbled as hard as they could from one side of the paper to the other. I didn’t know a thing about EEGs but my gut told me that this was probably not normal. We saw an adult neurologist who prescribed an adult medication (I didn’t know this at the time.) and set up a follow up appointment for three weeks. When Dear Son continued to have seizures at the hospital, I asked for a referral to a children’s hospital. At that time, I didn’t have any knowledge of the medical system and wasn’t even sure of what I was asking. Remember, this was twenty years ago and before the internet and back then, there weren’t as many disabled children, like there are today, or so it seemed. Anyway, they contacted the insurance and referred us to the best pediatric neurologists for seizures. They transported him by ambulance immediately and our journey began. (Back then, most PPO networks didn’t even break out physicians by pediatric specialties!) Dear Son was diagnosed, started on ACTH Therapy and was hospitalized for 3.5 weeks at Big Academic Medical Center. Over the years, I’ve learned that it’s important to have medical personnel who sees kids like ours. So the rule I invented was this: Your child should not be the worst patient the doctor sees that day nor should he be the worst (in medical terms) patient that he has in his practice. If he is, then you are not at the right place for your child. Ideally, you want a physician who has pediatric experience and who sees patients like your child all day and who has patients with severe disabilities and severe medical issues in his practice. In other words, you want a physician with experience with kids like yours.



We sold our house in another state and built this one to be closer to the Easter Seals. We made changes to this home to accomdate Dear Son's disabilities. The builder made one change and raised the foundation 8 inches to eliminate the front step in the walkway. Also, all doors were changed to a 36 inch width to accomodate a wheelchair. Our home was featured on the front page of the Big City Newspaper at that time, regarding custom changes our builder was willing to make.

2. Move to where you need to be. When Dear Son was born, we lived in a state that had very few resources for children with disabilities. While I could access good medical care, there weren’t any therapy places that were close. I asked our pediatrician where the best place was for therapy for Dear Son and he told us. As a result, I sold our house and we moved our family within ten minutes of the Easter Seals and never looked back. Children with severe disabilities need all of the advantages that they can in life. Do your best to put yourself and your family in the best place for them to achieve success.

Section II-Get organized. One of the first things you’ll need to do is to get organized. The sooner you can do this the better. I developed these things over time and they have served me well. Getting organized has several benefits: It allows for faster and better medical care for your child, especially in an emergency since you can communicate the information faster (plus you won’t forget it the stress of an emergency). Second, it reduces stress for both you and the child. Stress can be a huge factor in a weakened immune system. Not only do you need to focus on keeping your child well, but you need to look at the long term aspect of learning things that will keep you in good health. And finally, being organized helps our children be less stressed since they don’t have to worry. We may never know what goes on in their little minds, plus they aren’t born with the capacity to think and reason like we do, so we need to make their lives easier.

1. Be prepared. I have said this before but you need to create an emergency sheet, complete with diagnosis, allergies, medications and emergency numbers. If they are on a lot of medications, I keep a second sheet with the medications written out by time of day, so at 6 a.m. Dear Son takes these meds and doses, at noon, he takes such and such and the list goes on. Being prepared means keeping an emergency bag with medications, diapers, etc. basically anything you need to feed them, give medications or to change them. The emergency bag should be on the wheelchair at all times and go with you wherever the wheelchair goes. The purpose of being prepared is so that you can be ready for an emergency with your child. Having an emergency information sheet allows your child to get faster and better medical care. The goal of being prepared is so that you can offer the best care for your child and make your child comfortable. At school, this means that taking the time to make sure there is an extra feeding tube in his emergency bag, means that if the tube breaks at school, your child can still eat and doesn’t have to wait for you to show up at school with the new tube before he has his lunch. If you are taking a longer drive and it’s near lunchtime, take his medications and some food in case there is an accident on the highway, the kind where you are stuck in traffic for three hours. That way, if the unforeseen happens, you have their medications and you have avoided a disaster. Ditto for medical appointments near lunch. I take meds with and then give them at the facility so I don’t have to worry about making it home on time to give medications. Medications at proper intervals keep your child comfortable. If I have learned anything, it is, always plan for the unexpected.
   
2. Allow enough time when getting them ready. I have a little tool that I use that makes my life easier. I only wish I would have realized it earlier. When I get Dear Son ready, whether it’s ready for an appointment or just getting him ready for school, I allow plenty of time. I get everything prepared the night before-get bags packed, lunches packed, wheelchair inside and ready to go for the next day. On the day of the event, I use the 15 minute rule. I allow 15 minutes per task. For example, when I get him ready for school in the morning, I allow 15 minutes to get his meds (preparation and giving them), 15 minutes to get him dressed, 15 minutes to get him in the hoyer lift and in his wheelchair, 15 minutes for grooming and 15 minutes to get his coat/scarf/gloves on for school. That way, if anything else comes up in the morning, I have enough time built in and I don’t have to rush.


3. Pave the way to make their day easier. One of the things I do at the beginning of every school year is to type up a list of things that would make caring for Dear Son easier at school. This includes information about feeding him, changing him, location of emergency supplies, etc. It should also include little nuances or for kids who can’t speak, what their vocalizations mean. For Dear Son, he might vocalize to get them to “hurry up” and feed him faster. On the first day of school, I send this letter to the teacher. They tell me that it’s really helpful and that none of the other parents send a letter. The letter gives them information that helps them take care of Dear Son. Yes, they could do it without my letter, but it makes for a smoother day for Dear Son. Also, it gives them some guidelines. For example, I am a single mother and can’t always run to the store that evening. When I get a note that they need diapers, if I didn’t have an extra package, that might mean I’d have to go to the store. Instead, I tell them to send me the note when Dear Son is running low. That way, I have a day or two to get the diapers they need. It makes all of our lives better. I get them the diapers they need, Dear Son doesn’t run out of diapers at school and I don’t have to run to the store after working full time all day and then get Dear Son dressed and to the store for a diaper run.

You can read Part II here: Part II of III: Building their Self Esteem, Learning to Communicate, Mothering Tips

You can read Part III here: Part III of III: Advocacy and Compassion, Life Lessons and the Conclusion of How to Raise a Happy and Healthy Severely Disabled Child.

Note: Dear Son is nineteen years old and suffers from seizures, dytonia and severe developmental delay as a result of a random mutation of the ARX gene. In addition, he suffers from a progressive neurological disorder.

Super Bowl Menu

Today’s menu started with some grass fed beef in order to make a family recipe we call, “Grandma’s Sloppy Joe’s”. What’s great about this recipe is that there aren’t any seasoning mixes in there, just a few simple ingredients. One thing that is really important to me is knowing what’s in my food. I tend to make most of my food and rarely purchase any processed food. This takes more time but it definitely worthwhile. Not only do I avoid the chemicals in the food, but I avoid the excess packaging and I get better tasting food.

One of the first things I do on a day when I am eating things out of the ordinary, or heavier foods like sloppy joe’s and onion rings, is to start my day with a green spinach smoothie. The smoothie helps me get in six servings of fruits and vegetables for the day. My green smoothies include four cups of organic spinach, one organic banana and one half cup of organic strawberries or some kind of organic berries.
The first part was making homemade poppy seeds buns. I use a recipe from a bread making book for the hamburger buns then mix the dough using the dough setting on my Zojirushi bread machine. After nearly two hours, the dough is done. Once that has completed, I remove the dough, punch it down and let it rise again. Once that happens, I’ll cut the dough with a dough cutter, then mold it into buns. Next, it will rise for another hour. After that, I’ll mix up an egg white wash, made with my favorite organic eggs from Vital Farms. Vital Farms eggs are pasture raised eggs and humanely raise their chickens. In addition to that, they are by far the best tasting eggs I have ever had. I use that for an egg wash and then followed it up with some poppy seeds on top. Normally I like to use golden flaxseed on top but I was out so I used the poppy seeds instead. I baked them in my Breville Smart Oven which is a toaster/convection oven. What I love about this oven is it’s small size. It’s great for one or two people and more importantly, it takes up less space, uses less energy than heating up a full size oven and it’s much easier to clean. I call it my Easy Bake Oven, lol. Here they are all baked.

Once the buns were in process, I started on the recipe for Sloppy Joe’s. I started using some grass fed beef. I can’t afford to purchase all organic food but I am selective on what I do purchase. This is a family recipe which uses only a few ingredients. I love that.

Once the ground sirloin is cooked, it's added to the slow cooker with a few other ingredients and then placed on low for all of the flavors to meld together. Next are the onion rings. I choose oven baked onion rings to go with the sloppy joe’s. I like onion rings but am not too excited about frying anything. If you eat fried foods in a restaurant, they often reuse the oil, which can be toxic once it’s reheated. If you make it at home in those electric fryers, they are made from plastic which leach BPA into your food. I don’t know about you, but none of that appeals to me. I chose to bake mine. They are fairly simple to make. I started with an organic sweet onion, sliced it up, dredged it in a flour salt and pepper mixture, dipped it in an egg white wash, then dipped them in some home made bread crumbs. If you are making your own bread, it’s pretty simple to take a slice or two and chop it into bread crumbs in your food processor. It’s amazing how much more flavor you have when you make your own bread crumbs.Once those are baked, then comes the easy part. Putting it all together and enjoy it. I hope you enjoyed my Super Bowl Menu. Coming in the next few weeks will be my kitchen reveal. I ordered a few more things this weekend so I am just waiting for everything to arrive. In the meantime, you can check out other kitchen products that I like by clicking here or just clicking on the store button at the top of the blog. Once you open that link, it will list the kitchen products that I recommend with some reasons as to why I think they are superior to other products.