The caseworker came today

I called our county mental health department to ask for help with my son's constant crying last week. The caseworker came today and met me and Andy. I cried a bit when asked how I'm dealing with all this. Andy cried a bit too, in spurts. He watched Dora the Explorer, and Yo Gabba Gabba to keep calm. It worked a little.

The visit took two hours. I had to hand over copies of financial documents, and medical documents and tell of my struggles with Andy. I think the caseworker could see that I was struggling to hold it all together. I was genuinely having a hard time, and it came across.

They are supposed to provide a respite coordinator within 14 days. Then we should be able to start receiving weekly help with Andy. We will have to pay for the help, but that's okay for now, I just need the help.

I've hit my limit

I was finally pushed over the edge with constant crying and contacted the local health department to ask for help obtaining respite care. It isn't something that's easy to find online. Respite care, would be having a government worker come to my house once or twice a week, to help look after Andy.

Andy's doctor and social worker kept asking me if I had contacted them yet. I just wasn't compelled to pull the trigger yet. I kept thinking I would do it someday, and the day finally came. I just let Andy lie there and cry on the floor, while I made the call. The woman could hear his blood curdling screams, and she said they could come to the house in a week to "screen him".

They have to meet Andy in person to see how much work he really is. How bad off am I? How stressed does Andy make me? I've got to show them and state our case. Then we can pay a worker to come over for a couple hours here and there to help entertain him.

I just can't bear the full brunt of Andy's needs right now. It's worn me too thin. My fuse is gone. I'm calling my mom and mother-in-law as soon as he's been nonstop crying, and asking them to take him. I drop him off and take off myself. I have to right now. I'm just trying to stay sane.

Differences between a Lactose-free diet and Casein-free diet

Andrew's Rehabilitative doctor, who only sees children with special needs, had some information for me about Andy's diet. She suggested a month ago that I should remove dairy from Andy's diet. Telling me that for a lot of children, DAIRY in general can cause irritability. I agreed to remove dairy.

When I spoke to Andy's GI doctor a week later, I asked him if I could use lactose-free products for Andy, he told me yes. Andy has been using lactose-free milk, cheese and ice-cream for a month. When I next saw the rehab doctor, she further informed me about maybe trying to take Andrew casein-free, instead of just lactose-free.

She explained that lactose is the milk protein, and casein is a milk sugar. She said sometimes, the milk sugar is the problem, not necessarily the lactose. She said the only way to remove casein from Andy's diet is to remove all dairy products- completely. Lactose-free items still have casein in them, the milk sugar. She said often times if you are trying to remove lactose from your diet, you can safely do this by removing all casein, because where there is milk sugar, there is usually lactose.

I added that Andy doesn't get diarrhea when he has lactose, so I don't feel he absolutely has to be off lactose. However, he has been less fussy, but possibly due to his new anti-seizure meds. They have a side effect of helping curb irritability. I will continue to limit Andy's dairy, and see how he responds when he has a piece of cheese pizza or ice cream. If he becomes very fussy right afterwards, we may need to eliminate all dairy.

Luckily, Andy isn't a big yogurt kid, or milk-drinking kid. But it is when we have pizza, that lactose-free cheese may not be enough to keep the fussiness away. He does get a bit of gas after having dairy, so it could be making him irritable at these times. I need to observe further to know for sure what his diet needs to be.

The main take-away message I got from the doctor was, "When Andy gets REALLY fussy, what did he just eat?". And keep in mind a list of these foods to avoid.

Crying out of control tonight

Andy's crying is out of control tonight. I've given him Tylenol, and Orajel on a gum that feels broken in the molar area. We've turned up the air conditioning, dressed him in lighter clothing, talked to him soothingly. I walked him around and showed him that everyone is going "night-night". We told him that he gets to go to school tomorrow and take the bus. He seemed excited. But then when he lays down he is angry.

It could be the broccoli we had for dinner, or a tooth coming through. I just don't know. He has been crying for over three hours now. I am in my room with fans running and a white noise app running on my phone, because his constant whaling is driving me bonkers. I have to just not hear it for a while.

This is just what sometimes happens, and he has no way of telling us what is wrong.

Getting out of the house

I took Andy to my nephew's glow bowling party, and he did well there. He enjoyed when the black lights switched on and we were all glowing. I myself was invited to join a bowling league, and am excited to start it once a week. I will most definitely enjoy getting out without the kids, and not just to run errands, but to have some fun.

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.