About Me


I am a single mom of three amazing boys!  All three of my sons entered my family through adoption.  All three of my boys have developmental disabilities. My oldest son, Matthew has been diagnosed with Fetal Alcohol Syndrome and Bipolar Disorder. David, my middle son, has a genetic condition, he has a duplication on his 15th chromosome which leads to autism like symptoms, seizures and learning challenges. My youngest son, Jacob has learning disabilities. Each of my children bring unique challengs to our family and also bring their own personality and joys to our everyday life!

Sunday, October 30, 2011

jacob's birthday and a visit with Matthew

Today we celebrated jacob's 5th birthday.  His actual birthday is on Tuesday, but it is always easier to celebrate as a family on the weekend so, we had his birthday party today at Build a Bear and then we went out for dinner with my parents.  Matthew had been looking forward to Jacob's birthday, and we were able to get a pass from 4 Winds for him to go out with us this evening.

The first thing we did after we picked him up was take him to get a haircut!  It was great to see him looking so handsome!  After that we went out for dinner at Applebee's to celebrate Jacob turning 5.  

For the most part, our evening with Matthew was pretty good.  He was definitely doing a lot of people watching   and observing everyone who came into the restaurant.  He was concerned that it was dark outside and had a lot of questions to ask, which to me were signs of anxiety.

At one point Matthew was telling me that he was pretty angry with one of the kids he is with at 4 Winds.  This has been something he has been talking about over the past few days.  He typically starts off telling me that he is mad at one of the girls because they are mean, and then after I ask him questions, he will finally tell me that he is bothering the kids.  Today's story, after lots of prodding, was that he was telling the kids he was going out on pass, but unfortunately, matthew never says anything once.....so I am sure that the kids had heard all day he was going out on pass, and eventually it became bothersome and hurtful to some of the kids.     Apparently one of the girls got angry and stuck her tongue out at Matthew and he in turn stuck his tongue out at her.  What concerned me was that matthew commented multiple times that he wanted to punch the girl, and hit the girl because he was mad.  I reminded him that he needs to be nice to the kids and that he needs to be careful that he is not teasing or bothering the other children.

As I was driving Matthew back to 4 Winds he began to complain that the staff is mean to him.  This  has become his other main complaint.  Unfortunately, he then began to tell me that he was goingt to punch the staff and hurt the staff because they make him mad.  He says this as easily as he tells me he is going to get a drink of chocolate milk.  No more emotion, no less.

As I brought him inside and checked him back into the unit, Matthew greeted his friends and introduced me. He saw a new staff member and quickly went over and told the person that his name was Matthew.  I don't know if it is easier for me when Matthew tantrums and is upset as our visit ends, or if,as tonight, he just rejoins the program at 4 Winds.  As I was saying goodnight he asked one of the staff members if he would tuck him into bed......then he gave me a hug and a kiss, told me he loved me and I left.

It took all of my efforts to drive home with the other 2 boys.  I don't know how to do this.  There is no book to tell me how to be a mom of a child in a psychiatric hospital.  There is no support group, or person I can call who truly knows what this feels like.  I am not good at talking about how I feel, but as I write it down I can at least get my thoughts on paper and the emotions that are so deep inside me become emotions I can cope with.  It is not good to feel like your heart is breaking daily.  To be consistently confused, I truly don't know if I am more upset that he is in the hospital or more upset that he might come home soon.  When Matthew comes home, life will again become harder.  That said, I miss him and his spirit in my house.  However, I don't miss the stress and anxiety that comes with never knowing when the next outburst or tantrum will come.

I am hoping to speak to Matthew's therapist tomorrow and to learn more about the plan for Matthew so that I can begin to emotionally plan for the next step in our lives.

Saturday, October 22, 2011

contemplations

There is so much going on right now, and I don't know how to deal with all of it, except to write it down, and reflect. Matthew has been in 4 winds hospital for a week now. We are working with a new social worker, which means that it is taking time for us to figure each other out. I have to figure out how she works, and she has to figure out how to work with me as a mom. With so much going on, and everything moving quickly, it is a lot to do in a short period of time.

The purpose of hospitalization is to adjust medication,stabilize the child and get him out of the hospital as quickly as possible. For matthew they have taken him off one of his medications, and are debating taking him off of another medication, and then possibly adding a new medication. The good news is that in the hospital so far, Matthew is doing well.

There are so many staff constantly working with the children. For 20 children, there are at least 25-30 staff. Each group of 6 children has 3 staff members working with them directly, and then there are nurses, social workers, a psychiatric nurse and a psychiatrist. For Matthew the number of staff is key to his success. There is always someone to help ensure that the structure of the day remains the same. Everything about being in the hospital is predictable for matthew. From the time the kids wake up to the time the children eat each meal evrything remains stable and predictable for the kids.

For Matthew one of the biggest triggers is life bieng unpredictable. In everyone's life there is unpredictability. That is part of what makes life fun, exciting and sometimes hectic and crazy. Sometimes it is unpredictable because an unexpected errand comes up. Sometimes, an appointment runs longer than expected. Sometimes what we plan for dinner has to be changed. All of these unpredictable experiences are a challenge for Matthew.

Yesterday on my visit, his group was going outside at 4:30 and I arrived at 4:20 and did not know that his group was going out at 4:30. We started playing a game, and were having a nice visit, when suddenly Matthew noticed that the kids were going outside. He quickly asked how long i was staying, and I told him I would stay as long or as short as he wanted. (I had just met with the psychiatric nurse, before seeing Matthew, and she explained that Matthew does best with quick visits, because he does not relate to people the way that most people do. With this fresh in my mind, I wanted to have a great visit and allow him to help dictate how long I stayed.) As the kids got their coats on, Matthew said he wanted to go outside, and wanted me to go. As he said this, another little boy walked by and said "you should visit with your mom, visiting with your mom is way better than going outside."

Matthew became focused on going outside, so I encouraged him to ask the nurse how long the kids would be outside for. When he asked, the nurse stressed that the kids would be outside for 30 minutes and it was important to visit with me. Matthew and I finished playing our game and he quickly rushed off to get his coat.

As I walked outside, it started to rain. I looked back to wave goodbye to Matthew and motioned to him that it was raining. As I was getting in my car I realized that I had forgotten to return my visitor's pass. I turned to go back into the building and heard Matthew shrieking. As soon as matthew saw me the shrieks became louder and more intense. He started clawing my arm and screaming that he needed me to stay, Matthew then made a dash for the door. Even just the small disappointment of not being able to go outside was too much for Matthew. I felt horrible. I had stayed a little too long. The rain had come too quickly. I knew he would get outside again the next day, but for him that didn't matter. The staff was able to help calm Matthew down, and I headed for home feeling sad but relieved knowing that matthew had help to calm him down.

I am being told by all of the professionals that in time Matthew will need some sort of residential program to keep him safe and to provide him with the most successful life possible. I am taking this time while he is safe in the hospital to continue to wrap my head around this concept. My head knows that the structure of a residential program will truly help Matthew. My heart wants only what is best for Matthew. The psychiatric nurse and social worker have all said that Matthew thrives in a predictable, regimented program.

My hope and prayers are that right now Matthew will be put on a new medication or by coming off of the old medications, matthew will start to thrive and all of the talk of a residential program will end. My dream is that we will find a solution for Matthew that allows him to go back to living in peace as part of our family. Hopefully we will know more sa the week goes on and hte medications are adjusted......

Saturday, October 15, 2011

riding the roller coaster

Maybe I am like most people, and maybe I am more judgemental than most people, it is hard to know......but in this blog, I have committed to total honesty, and so here I am going to tell all. If I knew someone who had a child that was 10 years old and was placed in a psychiatric hospital 4 times, I would truly wonder what was wrong in the family. What the parent was doing wrong. What could be done differently? I would be very concerned that a family was that broken that the child needed that level of hospitalization within such a short period of time. I think this is one of the reasons I truly struggle with what is going on in my home. Here I am, someone who would knowingly think another family was doing it wrong, yet it is going on right here in my home. The last few weeks have been horrid. Of course mixed in with horrid has been some amazing times, but as a whole, it has been intense. I think the hardest thing has been that there is no predictability for when Matthew is going to get angry and it is like constantly walking on egg shells. Sure, most of the time he gets his angriest I can second guess myself and wish I had done something differently, but also for the most part, I truly believe that if he is going to explode it is a matter of when he will explode not if he will explode. To give you two examples..... The first one happened on Yom Kippur. I woke up in the morning and the food box, where we keep all of our snack foods, had been locked. Typically we keep the box locked so that I can limit Matthew's access to junk, but the babysitter had accidentally taken the key home, and so it had been left unlocked. When I came downstairs to get the cereal, I found the box to be locked. Now I was 99% certain that I had gone to bed with the box unlocked, but it seemed odd to me that Matthew would lock it, so I asked him what had happened. He did an amazing show of going to look for the key, and denying he was the one who went into the lock box. I truly thought for a few moments that I was going crazy. Maybe the sitter didnt take the key home as I had thought. Maybe I locked it, but I couldnt find the key, so I didn't think that was possible. Since we were getting ready to go to services, I decided to drop the topic, and I texted the sitter to find out if she had the key. We had a great time at services, and when I got back in the car, I had a text from the sitter saying she did have the key. So now, I had to ask Matthew again, how did the box get locked. After more rounds, he finally admitted he had taken the extra key and gotten in the box and then locked the box with the extra key. Now my frustration are many fold here... 1. if he was smart enough to get the extra key, why can he not figure out that I am going to be frustated when he goes into the box, he knows he is not supposed to go into. 2. If he was sly enough to do a big show of looking for the key, why was he not sly enough to understand that he would be in better shape if he simply told me, on the first try, that he had used the key, gone in the box and was sorry. At a loss, I decided that there had to be a consequence for him not telling the truth about his behavior, so I told him since he had been dishonest and had eaten too much unhealthy food in the morning, I would have to supervise closely what he ate at dinner time that night. Matthew immediately fell on the floor in hysterics. He ranted and raved, screamed and cried, and was out of control. By contrast, my father was here, and just kept telling Matthew over and over again, that this was no big deal. I always pick his food and supervise what he eats, so I would just be doing the same thing at dinner tonight. It was over an hour before Matthew calmed down. He got in the car with my father to head to their house, and was still upset. He tried to get out of the car as my dad was driving out of the driveway. He basically was just raging and out of control. After a while, he settled and had a good rest of the night. He was a little on edge, but for the most part it was a decent evening. The other example happened the other morning. I woke up and Matthew was not asking for breakfast- this is highly unusual behavior for matthew, and likely I should have just left it alone. However, he was heading to school, and like all good parents I wanted to make sure he had something in his stomach before heading off to school. When I asked him what he ate for breakfast he told me a cheese stick and an orange. I noticed that there weren't any orange peels around, but I basically just went on with my morning. Matthew became furious when jacob started to eat breakfast. He raged that he had NOT eaten, he needed food, he was starving. He ran out of the house, screaming and throwing things. He came back in the house and was throwing blocks, and trucks. I told Matthew calmly that he needed to calm down. That anything he threw would be thrown away or put away because he could not have toys that he was going to throw. He threw another truck at me, so I took the truck and threw it out, he threw a block at me so I reminded him that the blocks would now go to the basement. He raved for over 30 minutes. In that time, his school bus came, but he would not get on the bus. Finally, after he took a bat and was swinging it at me, I told him if it did not stop I would need to call for help. When he swung the bat again, I called 911 for help. The safety officer for our school district responded, and he was fabulous. He was helped calm matthew down, and then told him it was time for school and time to clean up. After he cleaned up, he got his bag and got in the car for school. I filled in the school principal about our morning, and headed off to have a day with jacob, because he had the day off from school, and I had the day off from work. Two hours later I got a call from 4 Winds. I had called them over a week ago, asking for a bed, because of Matthew's agression and they didnt have a bed at that point. It was hard to get a phone call yesterday saying they had a bed. It had been an emotionally exhausting morning, and I was feeling drained. However, it made no sense to say that we didnt need 4 winds on the day that we had the police at our house. That was an odd statement to make. After lots of thinking and weighing the options, I decided that Matthew needed more help than I could give him at home. What I never want to do is feel guilty that I didnt keep the other boys safe, or that Matthew hurt himself in anger. I never want to look back after something major happens and say I should have or wish I had ....... So I once again brought matthew up to 4 winds. I met with his doctor at the hospital, who again reminded me that he has a very damaged brain. That his brain will not respond as we want to medications. He reminded me that he wants matthew to be as healthy as possible, but that the next meds we will use come with worse potential side effects. he also reminded me that the staff at 4 winds cares for Matthew, and is there to help him. When I brought him to his unit, he was greeted kindly by staff, who call him "Bloomer". This is never a place I imagined being with my son. I never ever thought that the psychiatric hospital would be somewhere he went once, let alone more than once, or 3 times in 6 months. I never thought this would be parenting for me, and all I can hope is that we will find the medication that will help Matthew to be the best matthew he can be.

Saturday, October 1, 2011

an update

So much has gone on since I last wrote that it has taken me a long time to process it all and be able to sit down and write again. I think the hardest thing about being a parent of children with special needs is you never know what to blame problems on or even where to attribute life's successes.

This summer was horrendous for matthew. I wasnt sure we would survive it together and there were weeks that I had to do the unthinkable and begin to research residential programs for Matthew. In a nutshell, his summer school experience ended with mobile crisis being called two days in a row because he was so out of control. He had been fine both days going to school, but as we pulled into the school he became furious and was unable to be calmed back down. Each day after taking an extra clonodine and over an hour of a tantrum, he was able to settle. It is heartwrenching to see your child in agony like this. To know his brain is being tortured and there is nothing you can do to help him. It was horrendous to watch and to be a part of, and exhausting two days in a row.

matthew ended the summer at an amazing summer camp for children with special needs. I was worried about sending him, but also knew the boys and I needed the break, and that most likely Matthew would do well at camp. For Matthew, if he isn't comfortable with you, it is highly unlikely that you will see him struggle. I knew in 7 days of camp there was no way he would become comfortable, and he would be so busy, so I sent him with the hope that he would be successful.

He not only was successful, but he thrived at camp- it was a group of 10 children, all with special needs. 5 boys, and 5 girls and a wonderful staff! My hope is that they will have found enough success with this program to offer it again next summer and that eventually David and Matthew will both have the opportunity to experience a jewish summer camp.

The school year has started relatively well. David has grown in so many ways- I have not caught up to where he is and how capable he has become. My brother purchased an IPAD for David over the summer and it has been life altering. David has never been able to use a mouse, so in this age of technology he has been deprived all of the computer games that are part of life for children. Well, less than a day after getting the IPAD David was making up for lost time. It is so wonderful to see him playing games, doing puzzles, and entertaining himself and totally happy.

Largely in part to the reading APPS, and amazing teachers, and I think he was just ready, David is now reading! I never thought I would see the day that he would read! david loves books, given a chance, he sleeps with books, so to see him have the pleasure of reading makes my heart absolutely burst!

Last week David was given his first spelling assignment. I have to admit, I went into a cold sweat.....what was the teacher thinking? David can hardly write his name and this is after years of trying and practice. How was he going to do spelling? Was this a mistake? An error? a cruel joke? No, it was our new reality because David was ready! He got 4 out of 5 words correct, and the word he got wrong was "or" which he spelled "ro", so that was pretty close! He and I are doing Math homework each week now, practicing spelling, and he is inquisitive and asking about the planets, wants to know where China and Japan are located, and what animals live in each country! For the little boy, who no one had a guess how far he would come, my heart explodes....there are no more limits, only steady plugging away and david will learn everything!

Jacob is thriving in Pre-k. As a child who turns 5 in November, he could have gone to kindergarten, and I second guessed often this summer whether holding him back was the best choice, but he is truly thriving! His teachers are incredible, and he is gaining the self esteem and skills that will put him in an amazing place for kindergarten a year from now. His quick wit, and charming smile make him well loved by his teachers. he is making friendships and truly an invested partner in friendships with peers which is a new experience for me as a mom. He is invited on playdates, and wants to have friends over and it is truly a joy to experience these parts of parenthood.

As for matthew, the goal for school was for him to have a "SUPER SEPTEMBER". He had 2 rough days, but the rest of the month was amazing. His teacher is the same one he had in 1st and 2nd grade and she has only gotten better with experience. She is truly invested in Matthew having a successful school year.

Even this Friday, when Matthew struggled for over 2 hours, she kept pointing out that while he was spitting and cursing, he wasn't punching or hitting, and to her that was success! If you ask me that is looking at the cup more than half full! I am feeling more supported as a parent than I ever have and that counts for a lot as I continue to try to parent Matthew as he enters the world of puberty which leads to its own struggles and challenges.