Special Needs Parents are grieving

I went to a local support group that a teacher of special needs children started for us parents, and it has been good. The teacher just started a facebook page and set up a once a month meeting at the library for us, and it is what we needed. I would suggest that anyone start one with parents at your child's school if you don't have one. Meet at a coffee house, or library, or one another's houses. It is very necessary.

Special needs parents are grieving. The process is long and may never really end. I tend to bounce around the different stages of grief. There have been many months when I walk around with a smile on my face but I am dying on the inside. My tears just start to well up so quickly when talking about my son.

I remember so many times, just visiting the special needs programs with my eyes so misty. "I can't believe this is real", "I can't believe my son has to be here", were my thoughts. My son is not only disabled, he is severely, multiply disabled. That is the reality.

I would sit down in meetings with therapists, or school staff members and go through my sons history and just be trying so hard not to cry. I was just absolutely dying inside. It has gotten better over the years, now that he is four. I still get teary, but I can dry it up more quickly.

We are grieving the loss of a normal child, plain and simple. I am lucky that I get to have a normal daughter, as well as my special son. I have a separate pain for her, because she is constantly reminding me that I don't give her the attention she needs and desires. She says, " I wish I was disabled too, so you'd love me as much as you love Andy". It kills me. It truly rips me apart inside.

Despite all the hurt, Andy and Gabby truly love each other, and she is the light of his life. They were meant to be together, as he was meant to be with us.

Trying a lactose free diet for irritability

I took Andy to see a Gastro-Intestinal doctor for the first time a couple weeks ago. Both he and Andy's PMnR doc suggested that we try to make Andy's diet lactose-free for a while. I was told that for some kids, even a small amount of lactose, can make them highly irritable.

Andy doesn't experience diarrhea from lactose, but he may be experiencing bloating and gas from it. He has been on lactose-free milk, sometimes Almond milk, lactose-free cheese slices, and Breyers vanilla lactose-free ice cream. All found at Krogers. Sam's club also sells the silk almond milk. I could not find the lactose-free butter or cheese for the longest time! I brought it up to my mom, and she said you have to look in the organic foods section of your store, it is not with the regular dairy items. At Kroger, it is towards the front of the store.

Andy's irritability seems a bit better, but it is hard to tell why. He has also started a new anti-seizure medication, but not for seizures, he doesn't have them. The medication has a side effect of helping irritability, so he is taking it on top of his 5cc of Abilify each day.

Andy's irritability and inconsolable crying didn't become a major problem until after two years old. Between two and a half and three years old was a tipping point into the ugly. Major crying spells with no end, drove me to the doctor begging for some kind of medication for him.

The medications aren't always enough. He still has major temper tantrums, I think due to his age. If he is bored and not getting attention, he gets pissed. When I can't stand the crying any more, I have to say "That's it, let's go for a car ride".  Anywhere. Who cares. Just drive this kid around, he loves it. For a short while, anyways.

That's why he loves school. There is so much stimulation there, and so much going on. He is constantly entertained. He loves seeing other kids playing and having fun too. It makes him happy. Just like I try to keep him happy and not crying all summer long. Thank God for school, I just can't wait.  And also for now he will remain lactose free, because I need all the help I can get.

We got a night out / Carrie Underwood Concert

My husband and I got a night out. We went to see Carrie Underwood. Unfortunately, we had to drive two hours to get there. But I guess it gave us four hours alone to talk uninterrupted by kids. The venue was outside at the Soaring Eagle Casino and Resort.

I love going to Soaring Eagle Casino in Mt. Pleasant, Michigan. We played slots while waiting to see Carrie, because we got there at 5:00pm and were told she wasn't coming out until 8:00pm. They had a DJ on at 6:30, but the seats were so cramped and small, that I didn't want to sit there anymore waiting.

The slots were fun, and easy. It's been years since I had gambled there. I was able to just slide my money in, and then when I was ready to cash out my winnings, it gave me a receipt. I didn't have to stand in line for a teller.  I just put my receipt into a machine, and it spit my money out like an ATM.

Let's get on to the show! I was so excited to see Carrie Underwood, and she totally delivered. Her vocals were very on point and true. She flawlessly delivered a great performance. She shared with us how the first time she ever got on a plane was when she was 21 trying out for American Idol, and never dreamed she'd get to perform in all the places she is now.

She looked great. She had white shorts and brown cowboy boots, and wore sunglasses until the sun went down. There were pictures behind her that would change for each song. There weren't any outfit changes, which I was hoping she might change at least once. But I figured since it was a smallish crowd, maybe it wasn't going to be that involved. I just like seeing the different outfits people wear, and like to see performers mix it up a bit.

Very happy we went and it was a great night out. I was able to forget about all the every day worries with Andy and Gabby, and get better reconnected with my husband.

Need help at doctors visits

The last few times I took Andy to the doctor were an absolute nightmare. He screamed and cried while I filled out the forms at the GI doctor. He screamed so loud while the nurse was trying to get his vitals and ask me questions, I couldn't hear what she was saying. I was there alone, but what I needed was to have my mom there to walk him around while I tried to talk to the staff.

The nurse asked if there was anything I could do to calm him down, and I told her "nope, he's always like this". He wanted to get out of there, really. The receptionist was the most annoying when she kept coming into the room, with Andy screaming to tell me "I can't find your pharmacy in our files". Like its my fault. I pulled it up online and said "this one, here's the address and phone number". She came in a third time to tell me "You are going to have to just use the hospital pharmacy downstairs because I can't add your pharmacy into our system". I just told her "Whatever I don't care right now", as it had been well over an hour of Andy's constant screaming.

I asked one of his behavioral doctors, "Can I leave him at home next time"? She said "sure," she had seen enough. He doesn't need to be there to discuss the effectiveness of the new meds we were trying. However, I really do need someone there with patience, like my mother, for the next new patient visit. If my husband goes he will just end up punching someone in the face.

Stayed Overnight at Great Wolf Lodge, Travel Bed for special needs

My mom found a great blow up bed with sides on it, and an air mattress that fits inside at Walmart for $35. It is great for traveling, because it eases my worries of Andy falling off the bed. It came with a hand pump and canvas carrying bag.

Having the bed made me brave enough to try to take Andy somewhere overnight. We drove to Sandusky, Ohio and stayed at the Great Wolf Lodge waterpark and hotel. It is just a few short miles from the Cedar Point Amusement Park, which we visited the next day.

The bed worked out great. My daughter could also fit into it and she is 4 feet tall. He slept in it alone though, next to my bed. Andy surprisingly did well during the whole trip. He had one bad episode while waiting for food at Applebees.

He even did well at the arcade inside the hotel. He really liked all the noise and seeing all the lights on the games. He stayed entertained and didn't cry while sitting in the stroller.

He fell asleep easily in it, and didn't roll out of it. If I sat him up in the bed though, he could lean back and then roll out of the bed. He is unable to sit up on his own though, so it wasn't a problem.

I bought a "puddle jumper" for the trip also. It is a better, coast guard approved, life jacket for Andy. I got it online. This way he could wear it at the waterpark, instead of the huge ones that choke him they require kids under 42 inches tall to wear. It worked out much better, and I could carry him around easier with it on. It was $22 on amazon.com.

We bought a stander

We bought a stander off Craigslist, an online classified ad site. It is a tumble form tristander with a tray. The family we bought it from was so happy to see Andy putting it to good use! Andy goes in it several times a week for 30-60 minutes. Sometimes, every day. He is watching TV.

Potty training special needs children

Andy cannot stand up or walk, but can sit on the toilet really well. Before I didn't see the point in trying to potty train, because Andy cannot walk himself to the toilet. However, he is keeping his diaper dry for long periods of time, and doesn't like being in the diaper, once he wets it.

He can understand a few things. If I offer him food, he will open his mouth. If I put his cup with straw in front of him, he will open his mouth. He has certain instincts I guess. So, I wondered if I sit him on the potty, will he pee in it?

Andy lately will keep his diaper very dry for three or four hours, then he will do one big pee. If I notice his diaper has been dry for a while, I have been siting him on the potty and asking him to pee. I have to talk to him and be patient and keep asking him for about ten minutes. He seems to be concentrating and thinking about it. He will then pee for me.

I cheered and clapped for him and told him, "I'm proud of you. What a big boy, you peed in the toilet". I don't think he likes having a wet diaper, and he will fuss when he wets it. So, I'm going to give this a try for the summer anyway.

My normal/typical daughter also took a while to understand what I was asking her to do, when I would put her on the potty. Sometimes, I can see Andy attempting to go, just like she would. After a while, I tell him "Good job trying to go pee-pee, now we are all done. I'll put your pull-up back on". Even if it saves me a few pull-ups/diapers a day, its worth a try.

Irritable days

Andy was very irritable for four days. Of course, my husband was cursing the Abilify, and I was trying to keep Andy from driving us crazy. The doctor checked him out and found nothing. Two days later, I had a sore throat and congestion. So, I'm guessing this is what was making him so upset.

I did give him Tylenol on the last two days, even though he showed no fever. I'm glad I did now. It probably helped his throat a little.

We will be taking Andy to a Gastro-intestinal (GI) doctor in August. We want to rule out acid reflux. A practitioner told us that a high percentage of non-mobile kids suffer from reflux, and we aren't sure with Andy. We have been blindly treating him for it, and don't know if it is making a difference in his behavior or not. If he has a scope of his esophagus done under anesthesia, he will have to stop taking the meds two weeks before. We will also be trying to have a surgery coordinated with this, so that he may have his ear tubes placed at this time.

Every fall and winter, Andy gets between four and six ear infections, which is too hard to bear any longer. For him, and for us.

Trying to cope and take care of myself

I recently took Andy in for a one month behavior recheck, I'll call it. It was with a nurse practitioner in Andy's very busy and booked up Physical Medicine and Rehabilitation office. He cried the whole hour that we waited to be seen, and he had been crying in the car on the way there. By the time the NP came in, I was in tears too, about ready to walk out. She quickly asked how Andy was doing, "a little better", I told her. Then she wanted to move on to me.

"You don't look like you are coping very well with all this", she told me, and asked "Do you feel you are on the verge of a break down, or how are you doing?". I was crying uncontrollably by now, finding it hard to speak. I get upset when Andy is crying for hours, and I start to feel out of control. I also feel helpless to stop his outbursts, and feel I am failing him.

She told me that my husband and I need to go to counseling to talk about our feelings and hard times with Andy. I understand that I need to go to counseling, and feel I would benefit from it. However, my husband does not feel it will benefit him. I also told her that when I was depressed eight years ago, I used exercise to start feeling better. Joining classes, and working out for a couple of months, helped me to climb out of my depression. Along with seeing my friends and family more. But lately, I feel I don't have the luxury of time to do that.

Right now, I don't use all the resources I have. I tend to isolate myself. Andy is a very difficult child. Difficult to keep happy and entertained. He has a very short fuse. When he gets angry, everyone suffers. Nothing else can happen, but trying to console him.

I have several sisters and friends that I could turn to, but I don't. I need to start scheduling more time to spend with them, so I won't feel so alone. My mental health is definitely suffering right now. The nurse practitioner felt that I wasn't making myself important, and she's right. I won't be able to take care of Andy, if I don't start taking measures to get myself better.

We are trying to sell our old house right now. That has been a priority for us. However, I need to make myself more of a priority right now. I can't continue to put myself on the back burner. There is too much at stake. If only I could find the time...

Surviving the Stomach flu

My daughter got the stomach flu two weeks ago, most likely the rotavirus. It struck without warning. We were driving in my mini-van and she told me she felt like she might throw up. I quickly moved a few things out of her way, tried to find a bag for her, and too late. She threw up three times, mostly on her lap.

She didn't show any signs previous to this. The most important thing to do to try and stop future vomiting is to move quickly to the BRAT diet. This is a diet made up of Bananas, Rice, Applesauce and Toast. It is a bland diet, that is most likely to stay in your stomach and not come back out. However, my daughter is very stubborn and insisted on eating a few cheez-its. They came right back up. Avoid all dairy. For three to five days if you can. I knew this from a previous time. It will surely get you vomiting again. Get some Pedialyte or Gatorade right away to help keep your strength.

My poor daughters flu got severe. She had diarrhea and vomiting, and was unable to hold down even a small sip of water or Pedialyte. After three days of this, I could tell she needed to get into the hospital Emergency room. She was also having fevers of 101 degrees.

She was so weak and tired, she could hardly walk. She really needed to be rehydrated quickly. She was admitted and given fluids intravenously for two days. We've heard horror stories of 4 and 5 year olds getting the flu and dying of dehydration, and we were so worried about her. I checked with her doctor first, and she agreed that she needed to go right to the ER. It was my gut feeling as well.

Andy and I got it too, however, ours was not as severe. After first vomiting, we both had just a liquid diet the first day, then moved to dry toast only on the second day. We were weak, but we were no longer vomiting.

Andy was hesitant to eat, and often turned down sips of water or crackers. By the third day, we were both getting very hungry, but we went very slowly with food. I could feel that my stomach was still very off. Andy was off school for the entire week, and so was my daughter.

Despite vigorous hand washing and hand sanitizer, I got it. I was also the one cleaning up after the kids after they were ill, so I figured it would be unavoidable. We also tried anti-nausea medications from the pharmacy, but it seemed to me if your body needs to throw up, then it will. Benadryl was also suggested to "settle" my daughters stomach. I'm not sure whether it was effective or not. It seemed it worked for a few hours, but as soon as she was ready for another dose and didn't get one, she would vomit. The doctor ended up prescribing Zofran, an anti-nausea medication, for when we left the hospital. It kept us from having to go back in, I think. She would tell me, "I feel queasy", and I would give it to her. I did this for two days, until it seemed she could eat again.

We later learned that hand sanitizer alone was not killing this bug, so kids at school were urged to actually wash their hands, instead of just sanitizing before eating. My daughter often just washes the soap down the sink after pouring it in the middle of her hand, so I have to remind her to spread the soap all around her hands before rinsing. My son can also get sick easily, because others have to handle his food for him. He also puts his hands in his mouth all day, so it is very detrimental for him to have sick peers at school.