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.

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.

matthew update

Matthew has been in 4 winds again for the last 2.5 weeks, and there has been a lot of learning on my part, information gathering, and a need to face the realities of life no matther how harsh they may be.

I am thankful for a very strong, encouraging team at 4 Winds who, while at times it has been challenging, have helped me to understand the reality that goes along with parenting a child like matthew. Essentially, matthew is a child with brain damage-it is unclear how much damage was done, but the alcohol use while he was in utero has caused clear brain damage mostly to his frontal lobe, otherwise known as the area of the brain that is in charge of making important decisions. The frontal lobe controls all of your executive funtions- essentially Matthew now needs someone to be his frontal lobe to help him make smart decisions, to keep him safe, to supervise him at all times, as he is unable to do these things on his own.

In addition to the fetal alcohol syndrome, Matthew is also struggling with mental illness, most likely bipolar disorder. His moods change constantly- he can go from happy as can be, to a state of anger that is intense. He can go from motivated, to totally lethargic in less than 20 minutes.

At the hospital they have 20 staff with 15 children, in addition to social workers, psychiatrists and nurses. They have quiet spaces that children can go to if a break is needed. They have people who can help children 1:1 or even sometimes 3 adults for 1 child if that kind of support is needed- Matthew has needed this support multiple times in the hospital.

Many people in my world thought I was nuts to adopt 1 child on my own. Most people in my world really thought I was crazy when I adopted 2 children, then when those 2 children had identified special needs requiring intense services and I went ahead and adopted child number 3, anyone who thought I was sane, jumped on the "she's crazy" bandwagon. It is because I am strong willed, and a little crazy that I went after forming the family of my dreams even without a partner. It is because I knew what I wanted, and was bound to make my dream come true, with or without the support of another adult, that at times has led to some of my current struggles.

i am not great about asking for help. I like to believe I can do it all myself, and if I can't do it all myself I spend hours and days believing I am a failure. I am working hard to realize that I can't do this all myself. As a gift to my son, I have to realize that we need help. He needs help, and it is more help than I alone can provide.

Every 2 or 3 days in the hospital, Matthew has needed not only intense adult support but also medical intervention to bring him down and to stop his rages. Given this, the hospital is concerned that we need support at home. There is only so long that Matthew can be in the hospital, and that time is coming to an end. Sadly, brain damage cannot be repaired by medication, it cannot be repaired by behavior modification, and it cannot be repaired by any other methods that are treatable in a hospital setting. As a double whammy, many children with fetal alcohol syndrome also do not respond well to medication- Matthew, fits into this category and has had reactions to most of the medications that have been tried.

So now it is time for me to plan for my son to return home. I am putting alot of energy into making his return home as successful as possible. There will be posters in our house that remind matthew of the rules, we will try to live our lives more focused on routine and structure so that Matthew is as happy and comfortable as possible. In addition, I need a group of people who I can lean on. I need to ask for help, and that is the hardest thing for me to do.

I need help when Matthew is upset. Even when Matthew is calm,it is suggested that we have help in our house as many evenings as possible so that there is an extra adult to support and help Matthew through the rough spots that come with life.

I need people who can play catch with matthew, focus just on Matthew and spend time helping Matthew's life be a little more calm, so that the things that I have to do in life, such as grocery shopping, going to the store, and taking the other 2 boys on playdates, do not overwhelm matthew. I need essentialy to form "team Matthew". A group of people who can help me to create a life that helps Matthew function the best he can, that limits his outbursts, and focuses on helping him to succeed. I need to be the cheerleader and organizer for team Matthew. To focus on meeting him where he is in life, and keeping life calmer so that he does not escalate rather than plannig for how to deescalate him once he becomes upest.

I have 4 more days to figure out how to change our family and our lives so that we are ready for Matthew when he comes home. If you know of any child care providers, or education students who may want to join "TEAM matthew" please pass along their names.

I have worked hard in these 2 weeks to accept that family life may now have to include other people, it is not what I want, but I will always do what my son needs. here is to hoping and praying that Team Matthew buys us some days of peace and happiness! Here is to hoping that Matthew comes home as calm as possible!

all I want is accurate, honest communication from school

When I am at work I try really hard to focus on work. I know that my boys are typically safe, and that what happens at school needs to be dealt with at school. I am not as successful at compartmentalizing life as I would like to be, but then again, these are after all MY boys, and so like all good parents, I worry about them.

Summer school just started, a measly week and 1 day ago, and yet it seems like there is more confusion and messed up communication then I have ever dealt with. I know, and I try to remind myself, that there are at least 3 sides to all stories, mine, theirs and our shared reality, and I also know that everyday is just a little blip in each boys life, however all that said, I need communication to be accurate and honest and reflective of reality.

matthew had a good first day of summer school, a decent second day and since then, on his teachers rating scale he has had days rated as 2 or 3. Essentially a "2" day means that there was a large outburst, a "3" day means that there was not a large outburst, but that matthew was unsettled and on edge all day. We decided together, the teacher and I, that a "4" day was a good matthew day, and a "5" was outstanding, and a day where he got a "1" would be a day I would be asked to come to school as the problem was huge.

Why is it, given this scale, that on Monday when he had an outburst that led to the entire class being removed from the room, and 3 adults helping Matthew calm down, that I was told by the Social worker on Tuesday that this week he had 2 good days? Why was it that thsi is what the social worker said, when the note, DIRECTLY FROM THE TEACHER, said that Tuesday was a "3" day?

Why was it also that today when I spoke to the director of summer school, I was told that he had a good day today, but the teacher wrote that today was a "3" and Matthew was "far more elevated here than he was during the school year."

When I asked about these differences, I was told that "Monday was a good day AFTER the outburst, so it was a good day". If in a 3 hour program, you outburst for an hour, in what program is that considered a good day?

I have to deal in realities. I have to make decisions about my son, and I can only make decisions when I am given concrete facts to base my decisions on.

In similar news, the babysitter was told by the bus aide on Friday and Tuesday that David had a rough bus ride, and Matthew reported that Friday the bus was pulled over to calm David down. However, when I asked about this, I was told that he had a rough few minutes on Tuesday, but everything was find on Friday. Why was the bus pulled over? is David having seizures on the bus? Is he worried, what is upsetting him? David cannot communicate enough when he is upset to tell someone what is wrong. He uses behaviors to ensure that an adult helps him and supports him. Once you calm down the behavior, with help David can tell you what is wrong. As David's mom I am worried if he is struggling on the bus. I have to know what is going on so I can fix it. However, if I can't find out what happened, I can't talk to David and we can't problem solve for a solution.

I know this is only a 6 week program. I know that this program won't make or break anything for either of my boys, but I do need to know what is going on, and if they are ok, so that I can make appropriate decisions and without facts I can't do that.

in need of everyone's help

As an educator, I often do workshops and trainings for other teachers. Since becoming a mom of 2 children with special needs, a majority of my trainings now focus on including children with special needs in child care settings, and creating successful opportunities for children with special needs. I find these workshops to be very rewarding, and if they make a difference for even one child, then it is totally worth it!

Way back before children, I was asked to do a workshop titled, Working with children with challenging behaviors. Back then, I could not even have dreamed of some of the challenges I would be faced with as a mom, but I did a lot of research to prepare for the workshop, and over the years I have presented this workshop at least 20 times.

As I prepared for this workshop, one of the things I read has always stayed with me. I couldnt tell you the source anymore, but I can visualize the page, and think of the text often. What was written was the following:

"For a child with challenging behaviors, if their behavior allows them, even just once, to get away with something, or allows them to avoid doing something they are asked, then they will continue with the negative behavior with the hope that it will again get them what they want."

This is probably the most true statement I have ever read in regards to Matthew. If getting loud and out of control will help him to get what he wants, he will get loud and out of control. If he sees anyone who will help him to get what he wants, he will seek out attention from that person as a way to get his need met.

Please, don't misunderstand. I do not think that Matthew is coniving on purpose, but I do believe that often for Matthew his need to get what he wants, outweighs his need to do what is right. He has a nack for reading people, and quickly can work any crowd.

If I have said no more food, he will find someone who will give him food.
If I have said it is time to go, he will find a way to strike up a conversation with someone so he can stay a little longer.

For every person who "helps" by giving matthew what he wants so as to avoid a tantrum, it is just one more time that I have work that much harder to prove to Matthew that what I say is the rule.

For Matthew to learn anything, it truly has to be taught at least 100 times. However, if I have stuck to a rule 99 times, and just 1 time matthew finds a way around the rule, or is offered a bribe for better behavior, I essentially have to start with that rule again, and do it another 100 times.

Like everyone else, I would love to avoid Matthew's tantrums. Like everyone else, I would love to give Matthew all the treats and treasures of childhood. However, in my hopes to help Matthew understand rules, to be healthy and to gain the skills he will need as he grows older, I have to prioritize and handle the tantrums now, with the hope that they will become less as he gets older because he will have learned to respect the boundaries that are set.

Please remember, as a child with special needs, Matthew does not learn the rules of interacting with people like other children do. While it is funny that at the age of 10 Matthew goes up to strangers and asks for a taste of their ice cream, at the age of 20, it will not be cute, it will not be funny, and I may not be there to help him understand why this is inappropriate!

It takes a village to raise any child, it takes a village especially to raise a child with special needs!

a good day

A good day can have so many aspects to it......to each person and family it will be a little different. For us, today was a good day.

Today, we played a game as a family for 30 minutes! That is often something that I dream of and today we made it happen!

Today the boys watched a movie together for 25 minutes and they were able to be pretty independent and enjoy their time as brothers.

Today David and Jacob laughed and played in the playroom- they pretended they were running a restaurant, and each boy had a role- jacob was in charge of the money and David was in charge of cooking

Today we spent time at the library and we each left with books to read.

The boys have been asking me why my skin is white and their skin is brown- it has been a question that they are each asking, and that they have each asked repeatedly. I am not sure what kind of answer they are each in need of, but the typical answers I have tried:
- all of us are different and being different makes us special
- I love your skin, it is so beautiful
- and pointing out other people we know who have different skin colors has not helped put an end to the questions, so I decided I needed to find a book to read to them so we scoured the library for an appropriate book.

We spent 30 minutes tonight reading these books, talking about the books, and sharing our thoughts. Matthew listened to both books with lots of interest. Taking in the information, and chewing on all of it. Jacob, in true Jacob style, listened and moved and danced through the entire second book- while he is the one asking the most questions, I am not sure he knows what answers he is looking for, so he did his best to bring levity to the topic. David, loves all books and seemed to enjoy both books, but said very little.

We will read more books as we continue to chew on the issue of skin color and race and what makes our family. And I will hope that each time we read, we will spend the quality time that we spent together tonight!

Today was full of the boys loving each other, being happy together and me enjoying life as a mom. For every single one of these days, it makes the days of challenges that much easier to cope with. and for all of the days of struggles, it makes each of these happy days just that much more special.

It isnt a permanent solution......

See until you have lived a week in my family, I don't think it is fair for anyone to judge. Unfortunately, as people try to help and be supportive sometimes what is said repeats over and over and over in my head. Sadly, the things that repeat are never the positive comments, they are the ones that lead to questions. The comments that have me questioning myself constantly.

To catch you up, we have not had a very smooth last few weeks. When Matthew is doing well at school he is struggling at home, and when life at home is great, I am getting calls from the principal, so essentially it seems like Matthew can keep his behavior under control in only one part of his life at a time.

This weekend, we suffered through 6 intense outbursts. The first one was bright and early Saturday morning. The rule at our house is you need to stay upstairs until mom is out of bed. matthew and I had a deal that if he stayed upstairs, and out of the food until I got out of bed, then he could buy lunch on Tuesday at school. Part 2 to the rule is that I can be woken at any time. I don't care if it is 4 AM, if he wants to go downstairs, he is welcome to wake me up.

When I got out of bed Saturday morning at 7, and Matthew was downstairs I knew it was likely that there was a problem. Sadly, I didnt expect the problem to be that he had eaten an entire box of ritz crackers. When I reminded him that this meant he would not be buying lunch at school, he exploded for over 30 minutes with a tirade of threats and curses that would put the average sailor to shame.

We then continued on with our day with some pretty good success until the afternoon when we went to the pool. Some friends of ours went to the snack bar and Matthew asked a few minutes later if he could go to the diving board area. I said yes, and didnt give it too much thought. Then I looked over and saw him hovering over my friend's shoulder drooling over the fries. That didnt really bother me too much, sure it isn't polite, but it isn't that unusual for a 9 year old to drool over fries. However, what I saw next was unsettling- Matthew was picking up fries from the ground and eating them. I hate that he needs/wants food this badly. I hate that he doesnt understand that socially this is not ok behavior.

I called him over to me to tell him that he could not eat off the ground and that now he would need to stay with me at the pool, and we were again into a massive explosion. he was cursing and hitting things, and so I told him he would need to stop or we would leave the pool. Even with support he couldn't stop, and so we left the pool with him screaming, and pulling at me and cursing.

Meltdown number 3 happened as we were celebrating Father's day with my dad. I thought it would be fun to take the boys and my dad to a Valleycats baseball game. We were doing pretty well, and then it was time for the entertainment between innings. The valleycat mascot was driving a little car around the field and throwing t-shirts, and I encouraged matthew to go try to catch one. After they were all done, and I called him back to our seats, I noticed he was eating popcorn. He had asked a perfect stranger for some of their popcorn, and they said yes....now question number 1 is, what stranger says YES? question number 2 is, what child thinks this is appropriate?
Sadly, because I felt like Matthew HAS to learn these rules, I told matthew that his behavior was unacceptable and I told him I would not be purchasing him a snack at the game- now before you feel like I overreacted, you should know, he already had a hotdog, fries and some kettle corn at the game, so it isn't like he was being deprived. Unfortunately, there was no way for Matthew to understand this, and what ensued was 45 minutes of screaming and yelling and out of control behavior.

So basically, you can imagine the other 3 outbursts- essentially Matthew wanted something, i said no, and he exploded.......
at work today one of my co workers asked how Matthew was doing. I said, things were up and down and that I had called the hospital again to see if it was possible there was a bed available. I cannot live with him being aggressive. He is not safe when he is being aggressive, I am not able to parent him, and it is unfair for the other 2 boys to live like this. My best hope at this time is that the doctors at the hospital can find a medication for him that works. The hospital is the best opportunity for this to happen because they can keep matthew safe while they do this, and they can observe him 24/7 and make medication adjustments.

My coworkers response to me saying I was in touch with the hospital was "that is not a permanent solution". Of course that isn't a permanent solution. At this point i don't know that there is a permanent solution. In the best of al worlds we find a medication that helps Matthew control his emotions and behaviors and we live a normal family life.

However, I also cannot put my other boys or myself through living like this- it is the worst thing ever to see a 4 year old afraid in his own home. I don't know what the solution is. there is not guidebook that tells me. All I know for now, is that my hope is on finding a medication that helps Matthew so that we can go back to being a family that lives in peace. Where I can say no, and he can cope with that. Where I can go to sleep and wake up knowing that he has stayed asleep all night, and he is making good choices.

if anyone knows of a permanent solution, I am always ready to listen....but until then, I hate that I again have doubts, that I again don't feel secure and that again we are living life constantly one small step away from an outburst.