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!

Tuesday, June 29, 2010

the high dive

I took a step back today to watch Matthew....to really, really watch him and to see him....openly, with a heart that is open, and eyes that view him as everyone else.....you know what? he is a pretty magical kid. The world unites around him.....I have no idea why, but there is an energy that he gives off.....something that makes him stand apart from all others.

He is the kind of person you want to see succeed. I think a big part of it is that he treats the world with passion. If he meets you on the street right now you find out that his birthday is coming up. You know what our plans are for the week. BUT, he also asks something about YOU. He wants to find something out so that he can forge a quick connection.

For an hour tonight 30 or so people watched him on the high dive. Everyone cheering, offering support- offering an incentive, trying to get him to jump. For an hour, he never jumped. For 30 people, it never mattered.

He climbed up to the high dive and told me "i'm going to do it". After 10 minutes a guard was called over to help him get down.

he climbed up again, and said with conviction, "I'm going to do it", and again after 10 minutes he was helped down.

Finally he climbed up again- this time there were incentives galore- every guard at the pool was watching him. Kids ranging in age from 6-15 were watching him. Families were watching him. I heard more than one parent say, "i know you want to watch, but we have to go , it's getting late" and still they stayed.

The head lifeguard jumped in the pool and spent 15 minutes in the cold water encouraging him......each person at the pool had their own unique form of encouragement.
" it's not hard, just close your eyes"
"just run to the end and fall in"
"keep your eyes on the flag"
"I'll count backwards from 10...9...."

My boy is petrified of the drains. He has been scared of drains in pools on and off for years. The height doesn't bother him. The jump doesn't bother him. He cannot get past an irrational fear of drains. And that is completely ok, because in his own time he will again conquer this fear.

As I worried that people would get annoyed, I had the presence of mind tonight to look around, no one seemed annoyed. Everyone had hope that Matthew would conquer this fear tonight. Everyone hoped we would see him jump....heck, I even hoped we would just see him fall so he could see that there was no reason for fear!

As he left the pool a guard shouted- 'you'll try again tomorrow" and he will....because 30 people believe in him...and one day, he will believe in himself! and he will believe once again that drains are safe!

Sunday, June 27, 2010

in a funk....

ok, I am writing this all out, and then the plan is to GET OVER IT! I am in a funk...not quite sure why, I know that I can worry myself to death, but I also know that in doing that I can also miss lots and lots of good times. So, here it is...all worries in 1 place, and then I am putting them to bed.

Worry #1
We look "too different" to fit in.....In reality, I am sure that I am the only one seeing Matthew as SO different, but man is it smacking me in the face recently....I feel like all he is doing is talking nonstop about nothing...and sometimes it is SO embrassing. Can he ever be quiet? Why has he circled back to an obsession with mufflers? Why is he larger than life?

worry #2-
While David is better than he was a year ago, he just seems "off" to me a lot recently- am I looking too hard at him? is something going on? He is quiet...too quiet for my comfort...he just doesn't look good- and I know no one else will see it...and I konw I am an overworrier, but momtuition tells me something is "off"

worry #3-
I want each of the boys to have 1 good friend. Matthew's birthday is at the end of this week and while there are GREAT family friends for us to celebrate with, and I am ETERNALLY thankfuly for all of them, I will always wish that he had 1 good friend of his own.

worry #4-
I don't feel like we or I am fun to be with recently....life is just so BIG all the time, and so it is my goal to put the big away and just giggle, laugh and have fun...but that is easier said than done...especially when I feel like the incessant talking is making me crazy.
I am in my phase of life is too big for me. The house is overwhelming, I can't get it cleaned up. Each of the boys needs something new- process the SPOA stuff for Matthew, try to find a respite worker, look for someone new for reshab for matthew, focus on Jacob's speech, check on David, and fit in laughing and making memories......

worry #5
everyone these days is talking about extra help for their kids- do we need social groups? what will happen if we don't do 1? Do we need extra school work time? remedial efforts? Can summer just be about fun? Who needs what? How badly is it needed? what is the consequence of not doing remedial work? Is summer school enough? What if it is all I can offer? What is the true priority? how do I know?

I know all parents worry...so I know I am not alone in that at all.....but it just seems like there is so much to worry about.....and I dont know what should be worried about first....and the stress of knowing how to worry just makes more stress, which means I dont know who to worry about.......ugh......

Tuesday, June 22, 2010

making sense of it all

I just got David's report card, and before you say anything, Yes, I know for kids with special needs these are essentially a waste of paper. I know that they are written based on the time line of a typical child, so it might just be better to rip the report card up and pay it no mind.....but here is my problem, remember I have 2 kids with special needs, so I do have another person with whom to judge things against.

At the end of his kindergarten year, Matthew was writing his name and some basic words. matthew was telling time without hesitation- on a real clock AND a digital clock. Matthew understood the passage of time. matthew knew all of his letters and could identify them, AND he knew his numbers and had a sense of counting and 1 to 1 correspondence.

Matthew has an IQ somewhere between 68-72. To some this is equivalent to mild mental retardation, to others this scores him in the low average range for IQ.

Today I got David's report card. David is doing better in language arts activities than Matthew was at this age. David is also 6 months older than Matthew was as he ended his kindergarten year. However, David is recognizing only 24 letters, he can not write even a single letter, he can not spell his name, he can identify the following site words- "I" and "A" to which I have to ask- really? These count, or are these just listed to hurt my feelings?

David has made INCREDIBLE progress. In behavior alone he has come a long, long way. In social relationships he has started to show some interest, so it is not all about academics to me....however....I would just like someone to give me a hint....where may David end up? What skills can I expect him to gain? When might he write a D? If he can't write a "D" when do we show it to him on a keyboard? How far can he fly? How far can he progress?

I will promise to put on the rose colored glasses again later tonight....and in all honesty, none of these questions are asked with sadness by me. I am a realist. I need to know the facts. I like to cope with reality. If there is a ceiling for David, that is ok, but I am ready to know a time line....to have a hint what others on David's path in life and in all honesty Matthew's path in life have achieved. If we are talking special classrooms through High School, I am ok with that. If we are talking baggers at the local grocery store, I am actually ok with that also....you better believe my boys will be the best damn baggers that ever bagged groceries, and Matthew would be likely to get tips for his kindness, and David will make an art of packing groceries so they are sorted to perfection!

I just want to know what path we are traveling, so that I can pack my bags with the correct necessities......I just really want to know!

Monday, June 21, 2010

trying to figure it all out

I am not at all sure what to do about tonight.....I cannot believe that we may need help in the evenings, but I also don't want to see David scared again. There has to be some way for us to all be happy together and for me to help Matthew to learn to be angry in a safe, healthy way. The question is can I teach Matthew this BEFORE David becomes too scared.

We had a nice family dinner tonight- sure Jacob was mad about having to eat a carrot, and Matthew was much more focused on having dessert than he was on eating dinner, but regardless, we were together as a family. Finally, it was time for dessert. David went to get out the popsicles and there was one in the box that was opened. Of course, Matthew's first response was that he didnt open it, but by now all of you know as well as I do ,that he opened it. After a quick reminder to tell the truth, we were back on track. Unfortunately, just as I was going to hand out popsicles I found an empty cracker wrapper on the counter that should not have been there.

When we got home tonight Matthew had run into the house and came out hiding something. I of course asked if it was food, to which he responded "no, there is nothing in my pockets." After a quick peek at him, I didnt see anything or that he even had pockets, so I decided to take the easy route and so I believed him. Well, now with the empty cracker wrapper it all made sense. he knows the rule in my family is that if you lie or eat food when you are not supposed to you don't get dessert.....With my heart in my throat I had to follow through...he has to know that no matter what I am going to be consistent.

He knows our house rules, for him it is just a matter of whether I am going to figure out which rule he broke or not. So, I had him throw out the popsicle..of course I knew all too well that this was going to lead to the tantrum of the century.

I can deal with the tantrums. If it was Matthew and I, we could get through it, unfortunately it is not Matthew and I, there are 2 other kids here- kids who need me, and sadly Matthew is a very large 8 year old. No sooner than Matthew started to scream, David started to cry. All he wanted was the noise to stop. In David's world we all need to be happy all the time. David would love it if life was quiet and people followed the rules. My heart broke- how do I get him to understand that people get mad sometimes. That even if Matthew is mad it is ok. If there were 2 parents in my house one would play with the 2 little guys, and one would help Matthew...but there aren't 2 parents here, there is just me. How do I balance everyone's needs? How do I teach Matthew to be angry in a safe, quieter way?

I called my parents hoping that Matthew would talk to one of them, but he was too upset...too mad, he wouldnt get on the phone. I tried to get the other 2 boys into the tub, figuring that David would feel calmer, they wanted no part of it. I tried to get the little guys to play downstairs while Matthew and I were upstairs, but David needed to be near me. I tried, I thought, I tried.....I didnt konw what to do. I did all I could....we needed help. David and Jacob needed to know that they can play while Matthew is mad. They needed to know that there are people to help us if we need help. they needed someone to hold them while Matthew was angry, and I was with Matthew.

Thankfully, I called my friend and she came over. She and David and Jacob read books, snuggled and played. But how often can we do this? How many times will this be ok? Why are there no directions for how to be a single parent to 2 children with needs and a toddler? Why is there no one who can tell me how to do this better? differently?easier?

I have placed an ad for someone to come be with us a few evenings a week. For now the only thing I can do is make sure that David and Jacob feel safe when Matthew is angry- I know they are safe, but safe is a feeling- it is an emotion. When Matthew is yelling and banging and screaming and loud, to David and Jacob it feels scary. It feels out of control. It feels overwhelming. It is unpredictable. It is too much.

By 7:30 it was all over- there had been progress- Matthew came downstairs and apologized to David and Jacob all by himself. Matthew joined us for the bedtime routine and they all went to bed no worse for wear. For me however, all I have thought of all night is what next time? How can we do this better? What do I need to make this feel as good as it can for everyone? How many times before Matthew learns the limits? How many times before I know how to do this perfectly?

I do have to remember that there was growth in Matthew. That the boys ended the night happily. And maybe, just maybe it is time to learn that popsicles are the devil......and sugar water isn't worth this much stress!

Friday, June 18, 2010

Team meeting

I had a meeting with Matthew's teacher, social worker and the chairperson for special education today to discuss Matthew's upcoming school year. I am really trying to come to terms with the fact that this teacher who I love, who was supposed to be with us, err, I mean Matthew, for a total of 3 years is leaving. She is so good that she is being transferred to another classroom within the district that needs her. I get that, I understand as the director of a program that at times you take the best you have and move them because you need your best somewhere! But just because I get it, doesnt mean I like it!

This is one of the first times that i feel like I have a real TEAM for Matthew. We have worked out the nuances of communication, I understand them, they understand me, and we both have a true appreciation for each other. I know that there will be times that I will "need" more communication than they can offer. I know that there will be times when they will be busy or cannot respond to a topic or concern I have. We both know that if there is an issue that cannot wait, that we will respond appropriately.

We can read the appropriate tones in each others emails, we do not expect perfection from each other and most importantly, we all truly care for Matthew. This teacher loves him. He is her kind of kid! I know that she will miss him, and wishes that she had the next 2 years with him also.

We met today to discuss whether Matthew is appropriate to remain at his elementary school or if an out of district placement is best for Matthew. What I liked about this meeting is that I was a true team member. My questions were met with sincere answers. I was treated with respect, and they shared my concerns. The chairperson for special ed shared enough information with me so that I felt very comfortable and know that they are looking out for my son. They have his best interest in mind. And, most importantly, while they feel that for now they can offer him the best education, this does not mean they can offer that forever, and they encourage these conversations.

One of my favorite parts of the meeting was as we discussed who the aides would be in the classroom for Matthew for next year. I get the sense that this is a high burnout classroom, so at times aides are moved around year to year as necessary. However, one of the aides who has now been with Matthew for a few years is purposely being put in his class again next year because she "gets him" and is well aware of all of his tricks, scams and maneuvers. His teacher made sure to keep this aide with him because she knows it is important that we don't lose time with someone trying to figure Matthew out.

Matthew is a tricky kid. I swear he could get anyone to do anything for him. However, this is part of the problem. Having this aide with him means that precious time will not be lost. It means that we are not starting from scratch.

I will forever be thankful that we had a year with Mrs Warner. She has changed my life and Matthew's life. She has taught me to believe in myself, and has been there through me during some tough times with Matthew. She has helped me to understand that there is some mental illness in Matthew that we are dealing with. She has shared our success, and been sad at the challenging times, however through it all she has set a high standard for Matthew and been a strong support person for me.

She has invited us to stay in touch. She even suggested that Matthew can keep in touch if he wants to. I am thankful that she is remaining in our district, I have her email and I will work hard to use it only as needed.

It is a rare occasion for any family, but especially a family with children wtih special needs that you find someone who is as supportive and on target as Mrs Warner. I am so thankful that we moved to Bethlehem, and so very thankful that there are so many people in our world who are there not just to educate my children, but also to support me and to help me understand all that each of my sons need.

Wednesday, June 16, 2010

he cracks the code

Ok seriously, how is this possible......how can this be.....and what do I do with the information.......

Matthew has cracked the code to the food lock box. I specifically purchased a lock box with a combination that would be hard for him to do... yet since Sunday morning I have come downstairs and he has had food. Food that I was 99% sure I had locked. Food that he should not have had access to....but alas, food he HAD so he must have access to......

Since Sunday I have questioned my sanity. I have checked and double checked that the box with the snacks is locked. It has been locked when I go to bed, yet unlocked in the morning....maybe I didn't spin the dials. Maybe I thought I locked it but hadn't. There were truly moments when I had to question my sanity.....Alas tonight the truth comes out.

The boy has cracked the code. The boy who mind you had to ask me on Saturday where to put his dirty clothes. Could not remember to pee everynight before bed if I didnt tell him to. But he has cracked the code...knows how to access the food....I am telling you if he wasnt so busy wasting brain cells finding ways to drive me crazy, he might truly be a genius.

Well tonight....I have a master plan. I am changing the code- Two can play at this game! Tomorrow AM I shall be the one laughing..

Childish? Maybe
Pathetic? Ok, so what?
I have to create the illusion that I am in charge here because I am seriously beginning to think Matthew might be smarter than me....so while I still have the chance, I will use anything I can to my advantage....

I have to have some fun when I can!

Monday, June 14, 2010

home almost a week

Well, we have had 6 days together as a family, and life is becoming routine again. I have had the opportunity to have some pretty important reminders.....

1. Matthew is seen differently by new people or people who do not see him all the time.
I am working hard to take some time to see Matthew as people who don't know him well see him. This is not easy for me, but I feel it is super important. Every human has to feel good about themselves. We all deserve to be loved and seen positively daily. While I struggle to deal with all that is Matthew daily, it is all that he has to offer, and so I have to see what others see and appreciate what he offers to new people.

This weekend we went to a get together with a bunch of my old friends from high school. The first person that Matthew spoke to he asked if they had a drum set. I immediately started to roll my eyes because to me this is an old question. A routine fall back question for Matthew. For my friend though, this was a NEW question...one that he found charming and endearing and since the answer was YES, he did have a drum set, Matthew immediately fell in love and spent the evening with my friend. He talked with my friend about having a band. They talked about what kinds of drums they each had on their drum set. Matthew idolized my friend, and hung on every word he spoke. This was a first time conversation for the two of them. For me this is a daily, tired conversation, so it is hard to be excited by it. But when I remembered to listen to the conversation with the enthusiasm of Matthew the drummer, and I remembered that he is truly a talented drummer, my heart smiled, and I could be joyous of all that Matthew the drummer had to offer!

2. When Matthew asks for something, it is usually filling a need he has. Saturday and Sunday it rained, was dreary and on the colder side, and was just simply not pool weather. However, for Matthew the town pool opened on Saturday that means YOU HAVE TO GO TO THE POOL! I must have been asked more than 100 times if we were going to the pool. If the pool was open. What time was it open. What time does it close? What time are we going.......finally I broke down.

I'll show you I thought....THE POOL IS CLOSED!
Only problem with that......

the pool was open.

He jumped off the diving board for over an hour. And David and Jacob and I hung out by the pool. We played in the pavillion, we watched Matthew jump off the diving board.


we were not alone at the pool. So others were there too...even on this cold, cold, wet day. I have to remember to say YES whenever possible...even sometimes when I think it is not possible.

3. Smiley faces and treasures may just keep us all sane!
I am not a believer in toy bribes. I think that kids can be taught to do the right thing for intrinsic motivation. I believe truly in the power of doing what you are supposed to because it makes others happy and because you are part of a team, in our case TEAM BLOOM. However, I have gone out on a limb, and currently the boys are each working to earn smiley faces. 10 smiley faces can be turned in for a piece of junk from the dollar store! They are loving it, we are working on goals that need to be tackled, and you know what they are learning.

David is able to tell me if he listened or not and whether that deserves a smile.
Jacob can tell me if he whined or not and when and why.
Matthew can tell me if he listened to my requests on the first try.

By design it takes them days to earn a toy, so hopefully they are learning to make good choices because good choices feel good and make us happy....but if a toy that costs less than a dollar can make our lives this easy....well I may just have to rethink my parenting strategies.....

But I do have a question....if I do a good job, and I am patient this weekend....who is buying me a toy?

Tuesday, June 8, 2010

He's home

My guy is home... I picked him up at 2:00 today. What a difference a few days make! he is happier. He seems to be proud of himself and you can see he feels good. You can also see that he is working hard to cooperate, and trying his best to get back into family routine.

When I picked him up from the hospital he made my heart smile...he had really struggled to earn "smiles" at the hospital. Smiles were used by the the kids to shop at the prize store. The first day he was there he got a truck, but then over the next week he never earned a smile to shop with. Finally on his last night he earned 2 smiles and was ecstatic to go shopping. I figured for sure he would purchase a race car or a paper airplane he had been eyeing since day 1. Instead, when I picked him up he handed me a blue teddy bear and said "this is for you mom. I worked really hard and earned my smiles and got you this bear. I am so proud of myself!" I melted. This is the Matthew I know. This is MY Matthew.

It is very important that I remember that Matthew may need a tune up again in the future. That I keep in my mind somewhere that he deserves to live a happier life. That while it is frustrating for me to live with him when he is tantrumming a lot, it is worse for him. He does not feel good when he is like that. He does not have control over it. He has a mood disorder. He cannot control when his moods are up and down anymore than he can control all of the other things that the fetal alcohol syndrome does to him.

it is hard in the middle of the battle to remember to help your opponent. In this life Matthew is not my opponent but it had felt like that for a while. Matthew is on my team, and i am on his...but I may need reminders from those around us. If you see Matthew slipping, please tell me. If you see me being too harsh, please remind me. If I am frustrated and need a break, please remind me to take one. There is no one else here to tell me when I am off the mark. Those of you reading this blog are our family, our community....and it is true, it takes a village to raise a child. It takes a village for my family, and I have learned over these past few weeks we are surrounded by an AMAZING village! What a community of support we have! We are surrounded by amazing people.

I learned over the past few week and a half that life with a child with Fetal Alchohol syndrome is harder than i was aware. When I was living in the midst of our chaos it was just that...it was our chaos. It was life as I knew it. Now I know that life has to be slower paced. I have to make time for fun. If we are not having fun then something is wrong. We have a new behavior plan at home. Bedtime is more structured and there are expectations of each of the boys that they will perform certain tasks.

With summer around the corner, we are going to slow down, create more structure and ride the ride! Thanks to everyone who got me through this past week and a half. I am so happy to have my boy back home! And proud of myself for allowing him the opportunity to get the medical care he needed instead of allowing my fear to continue to make us live as we were. Mental illness is still illness, it just happens in the brain where it can't be seen.

Friday, June 4, 2010

A Matthew Tune Up

This has been a hard, hard week. If your child is in the regular hospital, you get to go and stay with them, and be with them throughout their entire stay. You are there to comfort them, to monitor what is going on, and to learn from the doctors what the game plan is.

It has been a week now that Matthew has been in the Psychiatric hospital, and I have seen him for about an hour each day. It has been a week of soul searching, learning, and making important decisions. Yesterday and today there is a marked change in Matthew- he is more comfortable in his own skin again. He appears to be a little more at peace with life. He is laughing, and a little more focused. However he says clearly that he is not ready to come home yet.

The hospital environment is allowing him to be somewhere where the expectations are never changing. The rules are the same day to day and routine is constant. Even more than at school, the hospital has a strict routine that never varies. For Matthew this is the ultimate in comfort. This is also not something that can be duplicated by most.

Outside time is from 3-5. Dinner is at 5 pm every single night. Then you bathe or shower, get in pajamas have some free time, and a movie goes on until it is time for snack and then bed. School is only for a few hours during the day, and the remainder of the time is in group therapy or individual therapy or group activities.

I think being in the hospital has provided Matthew an opportunity for some quiet, a break from all of the noise and stress that he lives with in his head. I think the strict routine has provided him the opportunity to slow down a little.

This blog is about me being honest and open and hopefully at some point our story making this an easier road for someone else to travel down. In being painfully honest I have to confront the reality that this has been a great week for us at home. The stress is gone. The house is quiet. Life is easy. We are happy. We are safe and David, Jacob and I also have a predictable rhythm to our days. There are no upsets, tantrums or outbursts to contend with.

Ths is not to say that the boys and I do not miss Matthew- David and Jacob mention him constantly and one night Jacob slept in Matthew's bed because he missed him. However, today in therapy with Matthew I was reminded after being with him for 30 minutes of the intensity that comes along with Matthew- he is larger than life. He is fast paced, and his brain races from thought to thought. His energy is awkward, makes me uneasy and is hard to tolerate. He does not view the world like others. He is at times giddy and excited about odd things, and alternately sad and quick to anger when you least expect it. He is the definition of unpredictable. This is hard to live with. This is hard to balance.

I have the weekend to prepare for Matthew to come home. I don't know what that means, and I am not sure what to do, but I do know I need to emotionally and physically prepare for matthew to come back. I need to make the house physically safe for matthew. I need to think about what he will be obsessing about that might be unsafe and make sure it is away. i need to make decisions about how I can keep him from accessing food at all hours of the day and night, and plan for how to set up the kitchen. He had hidden unsafe things in his room that I have now found, and I need to make sure that all of the unsafe objects are out of his reach.

I also need to mentally prepare for Matthew. he and I need to find a way to have more positive encounters. I am putting a new behavior plan in place for our house that focusses on positives. The goal is for him to earn smiley faces and little prizes and also to earn special time with me.

It is hard as a mom to recognize that life is easier when your child is not at home. For parents of kids with fetal alcohol syndrome, this is usually the case. These are challenging children to raise. Their brains have so many problems. Behaviorally, emotionally, socially these children need a lot of support- constant, constant support. I have 3 more days most likely to really prepare for Matthew to come home. I am counting the minutes until he comes home and my family is complete under one roof again, but I am also counting the minutes until he comes home because I know life will change again. All I can do is try my best to minimize the changes for Jacob and David and I and to recognize that all of us need a tune up every once in a while.

I know that this time in the hospital has been a great tune up for Matthew. So much of what has happened at home over the past year was because his medications were not controlling his emotional needs. However, even with optimal medications, Matthew is a child with brain damage due to alcohol use by his mom while she was pregnant. This damage is irreparable, and will have life long impacts for Matthew. Such a preventable tragedy.....I am so very glad he is mine and that I ahve the honor of making him the very best person he can be! I am learning so much about myself, our friends and our community as we travel this path to help Matthew.