I mentioned in an earlier blog that I was asked to leave my grandparents' house when Michael was 2. This was a very hard transition for both Michael and myself. I'd lived with my grandparents since I was 13. Maddox's father was not involved in his life and he died before he ever really got a chance to know him. Maddox's fathers' family denies him to this day, despite the fact that I have offered to pay for DNA testing to prove that Maddox is actually related to them.
I moved into my first apartment with my 2 year old and I thought we were going to be okay. He was bright and he hated daycare but I assumed that he'd get used to it. He was biting other children regularly so I sought the help of the school district and early intervention. The school district believed he needed early intervention but they didn't want to pay for it so they waited until he was 3 and the school district themselves needed to pay for his care.
I also took him to his pediatrician to rule out any medical conditions that could be contributing to his biting, insomnia, and violence. His pediatrician decided he needed to be evaluated by an ENT because he had recurrent ear infections and enlarged tonsils. His doctor believed if those issues were taken care of then his other issues would be fixed. Michael had the surgery 2 months after he turned 3. His surgery was on a Friday.
The hospital discharged him 3 hours after surgery because of the risk of RSV and because he wouldn't calm down. He was in a psychotic state. I know that now, but at the time, I didn't have any idea what was going on with my son. He was talking about cats that were going to hurt him and how he wasn't ever taking his hospital gown off because it was protecting him. I assumed this was all just weird post-anesthetic mumblings. The entire way home I couldn't get him to stay in his carseat. I called the pediatrician after his ENT didn't return my calls. He said that this sometimes happens and to give him an age appropriate dose of benedryl to counteract the effects. It did not help. I called back and he said to try to give him some Sudafed (it was still on the market for children at this time since it was 5 years ago) to help with any congestion or pressure that might be on his ears, and to dry up any post nasal drip because that could be causing him pain since he had his tonsils removed. I gave him the dose and it still didn't help. A couple hours later I called him again and he said that it was safe to give him his prescription pain medication and ibuprofen as well.
After all of that medication he finally stopped screaming and fighting and wanted to eat crackers. I told him he wasn't supposed to have them because it could hurt his throat. He was desperate. I finally agreed to break up saltines in a bag and he could eat them with a spoon since they wouldn't have sharp edges. He ate it and then demanded to see his grandmother. I called her and told her everything that had happened. She said to bring him to her and she would care for him since I had to be back at work on Monday. I said that I didn't want to burden her but she said she would rather have him at her house. We went there and he ran around touching walls and objects. It was the first time I noticed that behavior. He never stopped doing it. When he was 7 he told me it was because he couldn't tell whether objects or walls were real unless he touched them. Upon reflection- he has done this before the surgery and I didn't notice it.
She and my grandfather were able to distract him and he fell asleep for a couple hours that night. I came back up there to see him and he was just as wild as he was the day before. He refused pain meds and said he was fine. I called the ped again. He said to keep the follow up with the ENT. My grandmother said that he wasn't sleeping any better after the surgery when he stayed the night with her and I agreed. He was only sleeping 1-3 hours in a 24 hour period. His biting and aggression were getting worse. When I took him to his ENT for a follow up he was shocked that Maddox wasn't behaving any better. He said it looked like a psychiatric issue and gave me a referral for a pediatric psychiatrist.
I agreed because I didn't think it could hurt. I didn't really think he was seriously mentally ill- I thought he was bright and misunderstood. He was tiny as a 3 year old and I thought he was just being bullied at daycare. He didn't sleep much at home and he was violent often, but he was also so little that it wasn't a big deal. I could keep him safe. I assumed he'd grow out of it. I knew that toddlers slept badly because of developmental milestones and I assumed that was the issue with Michael since his vocabulary was astounding.
How very wrong and naive I was.
Tuesday, April 10, 2012
Monday, April 9, 2012
January First
I am a friend of the Schofields, who have a daughter named Jani who has Child Onset Schizophrenia. His book "January First" is being published in August. Please check it out. I'm going to be sharing more of our story in the following months. We have also been on Jani's mother's radio show "Bipolar Nation Radio" about how I could not get care for Michael at Kennedy Hospital when he needed inpatient treatment.
One thing I have noticed with parents of children with severe mental illness is that we are highly scrutinized, far more so than our counterparts who have neurotypical children. I have a second son now, who is completely and utterly normal. He also sleeps about 12-14 hours per night and takes a 2 hour nap per day. He is usually cheerful and happy. When I am out with my younger son, strangers often tell me what a wonderful mother I am and what a happy child he obviously is growing up to be.
On the other hand, when I am out with my 8 year old I get nasty glares from other parents when he begins to get upset about cats, crabs, or any other number of horrible things that he sees. If he says "LEAVE ME ALONE" to any of his hallucinations, he is badly behaved.
When I am out with both of my children- I get plenty of stares. One reason is that they look absolutely identical, except my younger son has beautiful blue eyes. We are of middle eastern descent so it's striking that he has blue eyes. Except their looks- they are polar opposites. Michael requires nearly constant stimulation and interaction while his brother is happy to play by himself. Michael often pushes his brother's stroller when we are out with a constant stream of encouragement from me. "Michael! You're such a good brother. You're making great choices. Your brother is lucky to have you." All the while, I can see him struggling to ignore his hallucinations which come from a place he calls "The Troll Bridge." His brother, on the other hand, is happily waving and saying hello to strangers. Despite Michael's violence in his early childhood and sometimes even now, he has never hurt his brother, nor does he show jealousy for him. He confidently says "My brother is luckier than I am because he has an awesome big brother who loves him a lot!" As sick as Maddox is, I would agree with his statement.
As difficult as he can be to parent, I deeply love and enjoy my older son. I wanted so badly for him to be okay. He is getting better as he gets older, but he is still schizophrenic. After he spent 6 weeks inpatient I didn't want to blog, or talk about him anymore because it was too painful to remember all the times I had to walk away from him in the hospital. Now, I have some distance from it and I can see how it did set him up to succeed in his school district that didn't believe he was severe enough to warrant a personal aide until they evaluated him inpatient. I still remain very angry that he was inpatient all that time and ultimately came home more unstable than when he went inpatient.
Since he has come home and he has a new psychiatrist, he has made such amazing progress. He is on a great medication regimen that helps keep him stable. He has a PRN for when his psychosis is too much to handle. He often asks for this medication, rather that an adult needing to offer it to him. I see him maturing everyday, even with his setbacks.
As I look back upon our life and how we moved halfway across the country I am happy. I am happy to be on the eastern seaboard, I am happy I live 10 miles away from my best friend, and I am happy to mother my sons. These are things I never thought I'd have. Our family is still in the midwest and we hope to see some of them this summer, but we're still really happy to be here. Here is home in a way the midwest never was for us.
One thing I have noticed with parents of children with severe mental illness is that we are highly scrutinized, far more so than our counterparts who have neurotypical children. I have a second son now, who is completely and utterly normal. He also sleeps about 12-14 hours per night and takes a 2 hour nap per day. He is usually cheerful and happy. When I am out with my younger son, strangers often tell me what a wonderful mother I am and what a happy child he obviously is growing up to be.
On the other hand, when I am out with my 8 year old I get nasty glares from other parents when he begins to get upset about cats, crabs, or any other number of horrible things that he sees. If he says "LEAVE ME ALONE" to any of his hallucinations, he is badly behaved.
When I am out with both of my children- I get plenty of stares. One reason is that they look absolutely identical, except my younger son has beautiful blue eyes. We are of middle eastern descent so it's striking that he has blue eyes. Except their looks- they are polar opposites. Michael requires nearly constant stimulation and interaction while his brother is happy to play by himself. Michael often pushes his brother's stroller when we are out with a constant stream of encouragement from me. "Michael! You're such a good brother. You're making great choices. Your brother is lucky to have you." All the while, I can see him struggling to ignore his hallucinations which come from a place he calls "The Troll Bridge." His brother, on the other hand, is happily waving and saying hello to strangers. Despite Michael's violence in his early childhood and sometimes even now, he has never hurt his brother, nor does he show jealousy for him. He confidently says "My brother is luckier than I am because he has an awesome big brother who loves him a lot!" As sick as Maddox is, I would agree with his statement.
As difficult as he can be to parent, I deeply love and enjoy my older son. I wanted so badly for him to be okay. He is getting better as he gets older, but he is still schizophrenic. After he spent 6 weeks inpatient I didn't want to blog, or talk about him anymore because it was too painful to remember all the times I had to walk away from him in the hospital. Now, I have some distance from it and I can see how it did set him up to succeed in his school district that didn't believe he was severe enough to warrant a personal aide until they evaluated him inpatient. I still remain very angry that he was inpatient all that time and ultimately came home more unstable than when he went inpatient.
Since he has come home and he has a new psychiatrist, he has made such amazing progress. He is on a great medication regimen that helps keep him stable. He has a PRN for when his psychosis is too much to handle. He often asks for this medication, rather that an adult needing to offer it to him. I see him maturing everyday, even with his setbacks.
As I look back upon our life and how we moved halfway across the country I am happy. I am happy to be on the eastern seaboard, I am happy I live 10 miles away from my best friend, and I am happy to mother my sons. These are things I never thought I'd have. Our family is still in the midwest and we hope to see some of them this summer, but we're still really happy to be here. Here is home in a way the midwest never was for us.
Different Accessories for Entertaining
Guest post written by Carolyn Branch
I think it's no secret that when most people entertain they do things a little differently than when it's just them in their home. Like when I'm entertaining and I want to impress people or just make everything nice for everyone, I'll pull out my good dishes and china. That's just how most people do. But there are the casual entertainment settings when you still want everything to look so cute but not make it look like you tried really hard. I have a whole other set of kitchen and serving stuff for that.
I have some serving dishes and stuff like that for things like that, but I wanted to do something a little extra for some casual living room entertainment. I was thinking lacquered serving trays. Lucky for me, lacquered trays are really in style and when I was looking online through some I saw info on vinyl siding replacement and knew that I could use that too. It's easy to forget about keeping the outside of your home nice looking for visitors, too.
I racked up in the clearance section on one of my favorite sites and found several trays that were just what I wanted at an even better price. Score! It's always nice when that happens.
I think it's no secret that when most people entertain they do things a little differently than when it's just them in their home. Like when I'm entertaining and I want to impress people or just make everything nice for everyone, I'll pull out my good dishes and china. That's just how most people do. But there are the casual entertainment settings when you still want everything to look so cute but not make it look like you tried really hard. I have a whole other set of kitchen and serving stuff for that.
I have some serving dishes and stuff like that for things like that, but I wanted to do something a little extra for some casual living room entertainment. I was thinking lacquered serving trays. Lucky for me, lacquered trays are really in style and when I was looking online through some I saw info on vinyl siding replacement and knew that I could use that too. It's easy to forget about keeping the outside of your home nice looking for visitors, too.
I racked up in the clearance section on one of my favorite sites and found several trays that were just what I wanted at an even better price. Score! It's always nice when that happens.
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