I didn't notice that Miles was different until 18 months old when he stopped talking he few words and would just scream night and day, happy and sad, excited, and angry. That was until I was pregnant with Mile's little brother M. When I was pregnant with Miles, I would down water like mad and we found out that I had gestational diabetes. I failed right off the bat of the three hours with him. It was so bad that they weren't sure if I should do the three hours. I struggled with it so badly. I craved the things i couldn't have. I would just cry my eyes out on the bed because I wanted...pasta. When he would move he would move like mad. All the time. Which was just like his big sister. Then, my blood pressure started having problems, then protein was found, then my red blood cells kept dropping, then fluids kept dropping. We almost delivered Miles at 35 weeks which was a week earlier then his sister. Nope, things changed for the better for two more weeks. When I went in for my c-section, he was moving around like mad. It was like he knew it was his time to enter the world. He didn't want to come out the way that he was suppose to...he made eye contact with the doctor right away...which the doctor said has never happened before. He had to be in NICU for 12 hrs because his blood sugars were too low. All because I couldn't eat for 12 hrs before having him. He nursed right off the bat and was a happy as a claim.
Then...he was yellow. I mean not your normal yellow. No...he was extremely yellow baby. We had his bilirubin tested all the time and they were fine..for three months this kid was yellow. Finally, the pedi sent us to a Children's Hospital to get him looked at by a GI specialist. Found out that Miles had an enzyme missing from his liver. Had to give him extra fiber once a day in his milk. Finally, he was normal color.
Miles never cooed, never blew spit bubbles, barely smiled as a baby, never laughed, never really repeated you. It didn't bother me because hey he's a boy, boys are not like that. He finally spoke at a year old the normal mama, dada, baba stuff. Then he spoke strange words like yellow, red, blue at a year old that was amazing. Then at 18 months it just stopped. He stopped sleeping good and would just scream all night long. It was like a switch flipped. I was working with autistic kids at this time and started to see so many similarties...so started to make calls. Got a referrel to three different hospitals. All three said they had two year waiting list... Miles started to be agressive. Biting became the worst thing alive. Leaving scars on his sister. She would cry in another part of the house and he would run and hunt her down to attack. Finally, got therapy going and things were getting better slowly.
Miles's little Brother M was born. M is different from the get go. M's pregnancy was different. I had gestational diabetes but only had my morning numbers having problems. He was born at 39 weeks via c-section completely healthy nursing right off. M started to coo and it dawned on me...never heard it from Miles. M started started blewing spit bubbles, Miles never did that until now learning it from brother. M smiles all the time, M laughs all the time, m tries to repeat, M says mama, dada, baba at 9 months old.
Watching M make all these milestones has made me realize signs were there. Signs were there that Miles wasn't normal. It's hard to see the difference between them and I am sure so many will keep happening as they get older.
Wednesday, April 27, 2016
This is the Last Week
Miles had a great couple of days. We have been able to get outside and enjoy the nice weather. He's been a pretty happy kid with minor meltdowns or no meltdowns at all. Which makes me very grateful. We also have been seeing major improvements in him. I like to think that I have done something to increase these improvements. But, we all know the truth he just figured them out. Like one of his major improvements is to give us warning when he's getting upset. Such has he strains his body tight from feet to hands in fist form and growls at you. We usually try to fix what ever is bothering him before he starts flipping out. It's been working pretty well, but it's not a 100%. Then when he doesn't want to do something he sighs really loud and rolls his eyes. My husband was getting upset over it and here I was silently cheering because he was forcing his mood not acting out his mood by screaming or hitting. I mean with our daughter we would be upset because it's rude but for him it's not rude...at all we rather he does that.
So also this past week, we put up a swing set. Miles was so happy and it gives him a new release for his energy. So it's been nice to be able to go out back and let him run and play. I am hoping to get more outside things for the kids so we can spend a lot of time outside. With him. But then we found new consequences...his mood takes a massive turn in the evening. The question remains..is it from being tired or is it from allergies. Part of me doesn't think it's the being worn out because when Miles is tired he is actually...in a better mood. I swear the less sleep this kid gets the less behaviors we have at home. Since we stopped forcing naps things have gotten a lot better. He's a weird kid. So, next is to figure out what kind of allergies he has...because no way do I want to give this kid benedryll every single day. Miles on it is crazy....he screams and runs around the house until it wears off.
So it looks like another appointment will be added to our list to get for Miles. I swear his appointment list is getting really long and keeping us busy.
Another epiphany moment is after we ate pizza for dinner. All night he was up coughing like crazy and drinking like mad. We eat pizza once a week at most and every time he is coughing all night long. So, another thing to get looked at for him is Acid Reflex. This kid is an awesome kid and we love him..we just need to take it one day at time.
Yesterday, it felt like everything changed for the worse with him. All of our progress went out the window. It was storming and we were getting nasty storms later that night. The closer the storms were getting the worse Miles got. At one point he was kicking me over and over again in my lower back, he wrapped his arms around my neck and pulled hard, he punched me millions of time in the back of my head. I just sat there, because I knew if I reacted or blocked him he would go after his sister or worse his baby brother. So, I sat there taking it and crying. It hurts that I can't do anything to help him. I knew the storms were bothering him and tried to distract him with movies. He was in that mood and it was hard to get him out of it. By the time my mom and Stephen arrived. I was done...I just wanted to stay away from him and be alone.
Today, is heading that way as well. It's hard on these days to get anything done because he wants to take it out on people. I just don't know...
So also this past week, we put up a swing set. Miles was so happy and it gives him a new release for his energy. So it's been nice to be able to go out back and let him run and play. I am hoping to get more outside things for the kids so we can spend a lot of time outside. With him. But then we found new consequences...his mood takes a massive turn in the evening. The question remains..is it from being tired or is it from allergies. Part of me doesn't think it's the being worn out because when Miles is tired he is actually...in a better mood. I swear the less sleep this kid gets the less behaviors we have at home. Since we stopped forcing naps things have gotten a lot better. He's a weird kid. So, next is to figure out what kind of allergies he has...because no way do I want to give this kid benedryll every single day. Miles on it is crazy....he screams and runs around the house until it wears off.
So it looks like another appointment will be added to our list to get for Miles. I swear his appointment list is getting really long and keeping us busy.
Another epiphany moment is after we ate pizza for dinner. All night he was up coughing like crazy and drinking like mad. We eat pizza once a week at most and every time he is coughing all night long. So, another thing to get looked at for him is Acid Reflex. This kid is an awesome kid and we love him..we just need to take it one day at time.
Yesterday, it felt like everything changed for the worse with him. All of our progress went out the window. It was storming and we were getting nasty storms later that night. The closer the storms were getting the worse Miles got. At one point he was kicking me over and over again in my lower back, he wrapped his arms around my neck and pulled hard, he punched me millions of time in the back of my head. I just sat there, because I knew if I reacted or blocked him he would go after his sister or worse his baby brother. So, I sat there taking it and crying. It hurts that I can't do anything to help him. I knew the storms were bothering him and tried to distract him with movies. He was in that mood and it was hard to get him out of it. By the time my mom and Stephen arrived. I was done...I just wanted to stay away from him and be alone.
Today, is heading that way as well. It's hard on these days to get anything done because he wants to take it out on people. I just don't know...
42 Days!
Thursday, April 7, 2016
Yesterday Evening FROM HELL
Okay,
So Miles went to school with no problem. Got off the bus no problem. I checked his backpack and found a note from his teacher. Oh no...was my first thought. What did he do? Is he going to be suspended? Did he hurt another child? Did he hurt a teacher? Those were my thoughts as I dreaded to pull out the note from his teacher. It said another child threw a toy and it hit Miles. I looked at my son and see no marks. But, I did think...well Miles you do that to everyone here. Then I thought, why were those my first thoughts. Is it my first worry for my son hurting someone Yes...for the reason he hurts a lot of his with no reason.
That evening, Miles had a meltdown. It was his normal meltdown but on steroids it seemed. We haven't had one to this extreme this long in awhile. He started throwing toys around which I took care of. He then chucked toys at his sister to hurt her or get her reaction. I blocked. I took him to his room and it was an all out punching me in the back of my head, kicking my back, slapping me, throwing toys at me, screaming on top of his lungs. At one point, I thought he was calm. So I let go...and he took off like lightening to the living room. Before I could get up, he punched his sister with a toy. I heard her scream bloody murder and had to peal him off of her. I then carried him back to his room. Grabbed the baby and sister and put them in my room for safety. Then took care of him blowing up to his normal levels.
Finally, his dad arrived and he took over while I took care of the other two. He fell asleep for about five minutes. When he awoke it was back to square one. I took him outside to see if I can get him to flip 180 degrees (it works sometimes, other times nope). No luck he screamed and screamed. Dad took over so I could take care of the baby. When my friend Tara arrived. She offered to see if he would calm down for her. She took it like a pro and soon he calmed down and was the happy go lucky kid again.
He ate his dinner. We did normal bedtime routine and off to bed he went. No fighting and no meltdowns...
This kid going to kill me...
So Miles went to school with no problem. Got off the bus no problem. I checked his backpack and found a note from his teacher. Oh no...was my first thought. What did he do? Is he going to be suspended? Did he hurt another child? Did he hurt a teacher? Those were my thoughts as I dreaded to pull out the note from his teacher. It said another child threw a toy and it hit Miles. I looked at my son and see no marks. But, I did think...well Miles you do that to everyone here. Then I thought, why were those my first thoughts. Is it my first worry for my son hurting someone Yes...for the reason he hurts a lot of his with no reason.
That evening, Miles had a meltdown. It was his normal meltdown but on steroids it seemed. We haven't had one to this extreme this long in awhile. He started throwing toys around which I took care of. He then chucked toys at his sister to hurt her or get her reaction. I blocked. I took him to his room and it was an all out punching me in the back of my head, kicking my back, slapping me, throwing toys at me, screaming on top of his lungs. At one point, I thought he was calm. So I let go...and he took off like lightening to the living room. Before I could get up, he punched his sister with a toy. I heard her scream bloody murder and had to peal him off of her. I then carried him back to his room. Grabbed the baby and sister and put them in my room for safety. Then took care of him blowing up to his normal levels.
Finally, his dad arrived and he took over while I took care of the other two. He fell asleep for about five minutes. When he awoke it was back to square one. I took him outside to see if I can get him to flip 180 degrees (it works sometimes, other times nope). No luck he screamed and screamed. Dad took over so I could take care of the baby. When my friend Tara arrived. She offered to see if he would calm down for her. She took it like a pro and soon he calmed down and was the happy go lucky kid again.
He ate his dinner. We did normal bedtime routine and off to bed he went. No fighting and no meltdowns...
This kid going to kill me...
WE GOT THE APPOINTMENT!
Sorry, I am literally jumping for joy when I received a call yesterday from Children's Mercy. Here I was pretty down that we were leaving the comforts of Infant Toddlers Services on Monday. So when I answered the phone and it was Children's Mercy I was so excited. We set up the appointment for June 9th...and that makes me excited and sad. We just have to get to June 9th...
JUNE 9TH...
jUNE 9TH...
JUNE 9TH....
JUNE 9TH...
2 months and 2 days
63 days
1512 hrs
5443200 seconds
We can DO THIS!
JUNE 9TH...
jUNE 9TH...
JUNE 9TH....
JUNE 9TH...
2 months and 2 days
63 days
1512 hrs
5443200 seconds
We can DO THIS!
Saying Goodbye is Hard
So on Monday, we had to say goodbye to our Infant Toddler therapist for Miles. When she arrived the first time we met her when knew she would make a perfect fit for our families. Not only was she helping Miles but she was helping the rest of us understand a little more about him.
When Miles was close to two years old, he was at the point of not speaking at all but screaming on top of his lungs 24/7. He would scream when he was happy, sad, angry, excited, anxious and all in between. Anytime, big sister would cry or whine he would charge after her no matter where she was in the house and bite her. We would spend most of the day in an all out struggle with him to eat, sleep, and even to not have a meltdown. His meltdowns were never shorter then two hours and by that point we were so beaten up by him it would cause us to be in tears. So when Patti arrived it was a godsend.
She helped us right off the bat to give us tips to get him to stop biting. As his bites were leaving scars and to show us how to get him to stop kicking me in the stomach (I was pregnant with #3). The biting went away for the most part. He fell in love with her that first day. She helped us with meal times and bed times.
She gave us so many good resources that helped us understand him. It's hard for a parent to ask for help but it was needed. She knew when it was time to pull in a speech therapist and OT therapist. She loved Miles and we always made sure to work with her each week. All three of my kids loved her and she has given my daughter tips in dealing with her brother.
So Monday, it was hard to say goodbye. Goodbye to that part of our lives that we had. Now, we don't have any therapies coming to the house and that in itself is hard. We don't get those tips anymore and those little helps to keep us going.
I have to say, I am so blessed to have Infant Toddler Services rush to get him evaluated for their program. It was hard to hear that there was a two year waiting list from every hospital in KS to evaluate him when we felt like our lives were falling apart. Infant Toddler gave us hope and send us our savior Patti at the time we needed the the most.
Next Chapter of ours lives is IEPs...
When Miles was close to two years old, he was at the point of not speaking at all but screaming on top of his lungs 24/7. He would scream when he was happy, sad, angry, excited, anxious and all in between. Anytime, big sister would cry or whine he would charge after her no matter where she was in the house and bite her. We would spend most of the day in an all out struggle with him to eat, sleep, and even to not have a meltdown. His meltdowns were never shorter then two hours and by that point we were so beaten up by him it would cause us to be in tears. So when Patti arrived it was a godsend.
She helped us right off the bat to give us tips to get him to stop biting. As his bites were leaving scars and to show us how to get him to stop kicking me in the stomach (I was pregnant with #3). The biting went away for the most part. He fell in love with her that first day. She helped us with meal times and bed times.
She gave us so many good resources that helped us understand him. It's hard for a parent to ask for help but it was needed. She knew when it was time to pull in a speech therapist and OT therapist. She loved Miles and we always made sure to work with her each week. All three of my kids loved her and she has given my daughter tips in dealing with her brother.
So Monday, it was hard to say goodbye. Goodbye to that part of our lives that we had. Now, we don't have any therapies coming to the house and that in itself is hard. We don't get those tips anymore and those little helps to keep us going.
I have to say, I am so blessed to have Infant Toddler Services rush to get him evaluated for their program. It was hard to hear that there was a two year waiting list from every hospital in KS to evaluate him when we felt like our lives were falling apart. Infant Toddler gave us hope and send us our savior Patti at the time we needed the the most.
Next Chapter of ours lives is IEPs...
Friday, April 1, 2016
A week from Hell
This week for some reason is worse then everything we have been through. Not sure if it's because of illness or getting used to his new schedule of going back to school after spring break. So...this week has been extremely rough on me, Miles, and his siblings. We have had a lot of major meltdowns and things that he has never done before do.
On Sunday, we had a hard time getting out the door to go to church. We knew it was only going to be sacrament because Miles couldn't go to nursery with his cold. So, here I was getting the kids ready. Miles flipped out because he did not want to wear his nice shirt for Easter and church. He screamed and cried in the hallway during sacrament. We finally just said screw it we were going home after thirty minutes of being there.
On Monday, Miles had an okay day. We had normal meltdowns after school and it was a pretty good day.
Tuesday: We had more meltdowns then normal but nothing to bad.
Wednesday: Is when all hell broke loose. Miles had meltdown after meltdown. Wanted to fight and destroy everything in the house. At one point I took out a fold up rocking chair and finally got him rocking in it and calming down or so I thought. I was busy nursing the baby when all of sudden Miles picked up my water bottle. Nothing new, he is addicted to drinking water. I had just filled it up too so it was cold. When he threw it at me and the baby. Nothing happened before hand to cause this that I can think of. Anyways, so I had a choice protect the baby or protect my face. I of course protected the baby from the water bottle. The water bottle then slammed into my mouth which caused me to bite through my lip. I was in shock and was able to safely put the baby down somewhere. I then put Miles into his room and held his door shut. I was at this point sobbing myself while Miles screamed and slammed his body against the door. I then felt my lip and realized blood was poring out the wound. So I went to the bathroom and cleaned myself up to find my lip.
On Sunday, we had a hard time getting out the door to go to church. We knew it was only going to be sacrament because Miles couldn't go to nursery with his cold. So, here I was getting the kids ready. Miles flipped out because he did not want to wear his nice shirt for Easter and church. He screamed and cried in the hallway during sacrament. We finally just said screw it we were going home after thirty minutes of being there.
On Monday, Miles had an okay day. We had normal meltdowns after school and it was a pretty good day.
Tuesday: We had more meltdowns then normal but nothing to bad.
Wednesday: Is when all hell broke loose. Miles had meltdown after meltdown. Wanted to fight and destroy everything in the house. At one point I took out a fold up rocking chair and finally got him rocking in it and calming down or so I thought. I was busy nursing the baby when all of sudden Miles picked up my water bottle. Nothing new, he is addicted to drinking water. I had just filled it up too so it was cold. When he threw it at me and the baby. Nothing happened before hand to cause this that I can think of. Anyways, so I had a choice protect the baby or protect my face. I of course protected the baby from the water bottle. The water bottle then slammed into my mouth which caused me to bite through my lip. I was in shock and was able to safely put the baby down somewhere. I then put Miles into his room and held his door shut. I was at this point sobbing myself while Miles screamed and slammed his body against the door. I then felt my lip and realized blood was poring out the wound. So I went to the bathroom and cleaned myself up to find my lip.
Even now my lip is swollen and it hurts to eat. I couldn't wait till my husband came home and was able to be there.
Thursday: I was fighting battles all day with him. It felt like, and when my mom arrived home. It was even worse. He was throwing chairs at everyone and trying to throw his kids table. Finally, my mom had to restrain him with her legs and he fell asleep at six pm. Do I regret him going to sleep early...nope as his Dad wouldn't be there to back me up until after bedtime.
Today: So far he decided to punch his baby brother, punch his sister, punch me all with toys. Also thrown many toys at me because his sister was sitting somewhere where he just decided to sit.
This week has been the worse in a long time. I am actually sitting here crying because right now I dread for his Grandma bringing him and his sister home. I feel terrible feeling that way but I need a break. I don't always get a break when others come home and it's hard. I am always on the go and always watching like a hawk to see what is going to happen next. Though, yesterday good news. I was able to finish the paperwork for Children's so it's off towards there. Closer to getting some much needed help.
Right now any help to figure out his triggers and how to help is is rewarded.
Kendra
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