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, May 30, 2010

today's questions

I can spend a lot of my time beating myself up....I am actually very, very good at it. I like to beat myself up or question myself so that others dont have to. In my head all day have been the following questions....
1. Do you think Matthew would have been like this wherever he lived?
2. Do you think there is REALLY something wrong with Matthew?
3. How could one person REALLY adopt 2 kids with special needs? What are the chances of that?
4. Maybe it is my fault. Maybe I don't spend enough time with them. Maybe I spend TOO much time with them. Maybe I don't really know how to be a good mom. Maybe I watch them TOO closely. Maybe I dont watch them closely enough. Maybe it is true---you really do need TWO parents in a household.

5. Could I really have adopted TWO kids with needs?

Whenever I call Four Winds I am hearing how GREAT Matthew is. Of course he is great. Why don't I EVER see him as great? Why is this kid who is AWESOME for so many such a struggle at home? Such a struggle at school? Maybe school is the problem? But if school is the problem, then home HAS to be the problem also.

Matthew is cute, and funny and endearing...for a while...but he is also all encompassing, and exhausting, and repetitive. Sure, today when I was there for an hour and I had an hour JUST for MATTHEW, we played cards, played CANDYLAND, and chatted- but I never get to really chat with Matthew. There is no chatting, in the give and take sense of chatting. It is like he talks AT you.

The day is a report- "I had pancakes and cereal, we went outside, we played basketball I like basketball, do you see the hoops. I am good at that. well goodbye it is snack time, my group is going outside.

ME- Matthew I just got here. Let's play some more, and chat.

Him- NO, that's ok. It's snack time, I have to go.

ME- Let's go find out if it's snack time.

Him- no that's ok, oh alright.....we found out it wasn't snack time.....
Him- I ride on the bikes, you need a helmet, I have lots of friends here. My friend william is my roommate- this is his bed, he got the girl bed. He has a Dora blanket. I have spiderman. We watched a movie about a dog. It is funny but inappropriate. There are bad words. I have to go get snack.

Three times we asked if it was snack time. Three times it wasn't snack time. I was there for an hour, and while we played a few games, there is no emotional connection. I guess that is what makes this so hard. I am mourning for Matthew. I am missing Matthew. I don't want a goddamn report. I want a "mom I love you, I am so sorry. Please take me home. I am so sorry. I miss you".

That is not coming....I can prompt him to say it, but it is not genuine. Does he not know that my heart is broken without him at home. That my brain is fighting. I want my family whole again, but I want life to be easier. I want to find him funny and cute and endearing, but part of that means that there is give and take between he and I, and with matthew there is no give and take.

Friday, May 28, 2010

no where to go but up

Today I admitted matthew to Four Winds Hospital. Today I think we made a painful step towards change. If nothing else, maybe they will adjust medication. Maybe they will be able to work and find the right combination of medications that will help him.

After spending a few hours with matthew while we waited for him to be admitted, it is a wonder that he can live and function at all. He is constantly distracted. The world is a distraction for Matthew- "how much is 2*1? What is 1*2? What day is it today? When is your birthday? are you married? Do you have any kids....yes sometimes I feel sad. I have friends. We play together. I get angry. What is 1*3? Why are your nails so long? Do they hurt you? What is 4*3?

That is what it was like to be with matthew today. That is just a little glimpse into his world. How can he be expected to learn? to make friends? To be nice? When his brain is racing constantly?

Even the simplest of questions- what is the same between an apple and an orange- lead him down all sort of tangent paths. Apples are red, oranges are orange. Two years ago on a Thursday at midnight I had a dream about an orange. Oranges and apples you say? Apples and oranges- mmmmmmm, I would like some milkshake.

What is the same about an apple and an orange?

They are round...both are round. can I have a milkshake now?

Something has to stop the motion. Something has to clear Matthew's head.
Hopefully over the next week they will make some changes. Hopefuly we can slow Matthew down.

Hopefully. Hopefully.

Thursday, May 27, 2010

rock bottom

I cannot figure out how to cope with today, so I have decided that maybe I need to write out my feelings and fears and hopefully that will help.

It started out as a good day....it had been a rocky week- a rough Monday started with me driving Matthew to school- he had decided he just wasn't going. After the principal and teacher got him out of the car he had a good day.

Tuesday, I went out to start my car and it simply wouldn't start. $1200 and some new tires and a new part for the car later, and the day was looking up. Unfortunately at 3:30 I got a call that Matthew had been tantrumming for 45 minutes and would not get on the bus to go to his after school program. My car was still in the shop, and there was no one who could help me get Matthew. Luckily at the last minute he got on the bus himself and had a great day at the after school program.

Wednesday was a good day- the kids were happy, the sun was shining and all was good.

Thursday however we hit the bottom- the low, what I hope to be the turning point for Matthew.

The morning started off ok, the kids were playing and happy together. Unfortunately, Matthew made a few bad choices- told some lies, refused to do his homework which he had not done Wednesday night either, and stole some food. Sadly, while none of these alone were big incidents, this meant that he was starting his school day with 4 zeros, and therefore would be missing recess. Had he just told the truth, or done his homework, or not taken the food he was told he could not have, all would have been fine....however, once matthew realized he was not getting recess, the day quickly plummetted.

It started with him refusing to get on the bus to go to school. He sent the bus away twice. So I drove him to school, and he would not get out of the car. I went in to get the principal to see if she could help. She brought out his teacher and the three of us worked with matthew for 30 minutes trying to get him out of the car. We encouraged good choices, we reminded him that while he had lost some things he still had free time at school. he still could play at home this evening. he could read the daily schedule. he just had to get into school. Sadly, he refused, and refused and refused.

After 30 minutes of trying to encourage him and cajole him into school, the teacher and principal decided it was time for the next step. The Safety officer for Bethlehem schools was called to escort matthew into school. My boy is 8. A young, young 8. I have never been so sad and scared....what would happen? How would he react? What would I do? How did our lives get to this point? Why God? Why?

The only one not phased when the safety officer arrived was Matthew. It took the safety officer and a policeman 25 more minutes to encourage matthew to get into school. I was asked to leave- have you ever had to drive away like that? Matthew crying, jacob worrying, me a wreck...and I drove away.

I watched from across the street until I saw Matthew safely inside. I checked with the policeman as he was leaving, and he said all was ok.....It took all my powers and I didnt call the school until 12:30 to check on my boy.

At 2:30 I got an email from the teacher- asking that I not call during the school day. That it disrupts the class. That she will call if there is a problem. That she will write in the notebook if he has a hard day. That NO NEWS is GOOD NEWS......My son went in to school today escorted by 2 policemen.

NO NEWS is GOOD NEWS? There is no good news......not today....not for me.

Sunday, May 23, 2010

a good day- simplicity at its best

As a single mom who LOVES sleep, often on a Saturday or Sunday morning I will lay in bed drifting in and out of sleep listening to the sounds of my house. Sure, if there is impending drama, I will get out of bed, and we will start the day, but sometimes, like today, in my quiet, when the boys think I am sleeping, I can hear the growth and love between all of them.

All three boys were in Matthew's room playing with cars, and the conversation and play was incredible:
Matthew- "here's the orange car Jacob"
Jacob- "thank you"
David- "we're going to the store"
jacob-"what we buy"
Matthew-"we are out of food"- note even in his sleep the boys is worried about food-LOL

And on this play continued for almost 30 minutes. At the end of that time, the boys came in one at a time, and crawled back in bed with me and watched Mickey Mouse Clubhouse. Sure there was some drama between Jacob and Matthew about who would lay where, but I was too busy watching David bring in ALL, and I do mean ALL, of his covers, to let the drama spoil my moment.

This was just one of those perfect mornings that started the day off happy.

The day has continued with Matthew going out with his residential habilitation worker, who for 4 hours per week takes him to work on skills and for some just Matthew time. David, Jacob and I headed to Wal Mart for some much needed grocery shopping and errand running.

Continuing in his adorableness, as we walked into Wal Mart, David insisted that he needed a hair cut, and then both boys begged for a new book- today was one of those days where a $3 book was worth making them happy....and who can deny a cutie like David a hair cut? Even the hair stylist couldn't resist him when he batted his cute little eyes at her!

We will round out the day with a hike at 5 Rivers with some friends followed by dinner, hopefully some snuggle time, some reading and then bedtime!

These are the days where love is built, memories are made, and the family connects! These are the days that make it worth going through the rough patches....these, in reality, will be the days that I hope we all remember forever!

Thursday, May 20, 2010

scary mom moment

In my last post I was lamenting feeling down and wanting to just soak up the good moment we were living in....well apparently the down feeling was me just having that good old mom intuition. Monday at noon I got a phone call from David's school- he was off and had a low grade fever 99.9 and just didnt look good. The nurse wasnt sure if it was seizure related or not, but when I offered to come and peek at david the response was a YES, so I drove to his school.

needless to say, David looked horrible- he wasnt speaking, and immediately his bottom lip came out as I entered the nurses office, he crawled on my lap and whimpered...I tried to get him to talk or tell me what was going on, but he said almost nothing. Fearing a seizure was coming, I decided to take him home. The entire ride home he looked HORRENDOUS...I wasnt sure if he was having a seizure or not the whole way home, but he just kept looking worse and worse.

When we got to the house he did a very odd breathing thing, and could not respond or get himself out of the car. I tried to pick him up to carry him inside, but his body was just stiff. Finally after a few moments I was able to carry him in and he asked for me to sit on the couch with him. I covered him with a blanket and lay with him. I had called my mom after hearing from the school, mostly because I was very anxious and wanted to chat with her as I drove to school. Thankfully she called back as we got in the house and was able to come and see David and me.

As we lay on the couch David was just stranger and stranger acting and looking. His body looked tortured. His eyes said so much, but not enough for me to know what was wrong. Was he sick? Was he having multiple seizures? Did he have a sore throat? there was no way to know, and he was unable to tell me.

After my mom arrived we decided to give him advil because his fever seemed to be going up. After more than 45 minutes, the advil had done nothing and David was laying on the couch looing like he was sleeping, but really awake the entire time. His eyes were so heavy, but he could not sleep.

My mom left to go home with a promise that I would keep her posted. Around 4:00 I touched David again and his fever was scary high- my guess, because my thermometer was broken was likely that he had a fever of 103 or higher. After giving him more advil, and with only an hour left before the pediatrician closed, I called and got David and appointment. I carried him to the car, and then into the doctor's office- he seemed to have absolutely no energy at all.

The doctor checked David out completely and found nothing. With a promise to go to the hospital for bloodwork if David wasnt better soon, and the knowledge that our doctor was on call if he was needed, we left the doctor's office knowing little more than we had arrived with. The only positive was that we were not dealing with an ear infection or strep throat....the cause of the fever and fatigue remained a mystery- and the biggest mystery by far was David's inability to speak.

Time ticked by slowly when suddenly at 5:30 David picked up a book, flipped through the pages and giggled. I was shocked. We were in the car but suddenly he had a twinkle in his eye and his language had returned. Now this was strange. I was very thankful, but even more curious. I have never heard of a virus or infection that causes these symptoms.

David remained healthy and happy all night long. He returned to school the next day, and seemed to be fantastic. The only thing that changed between noon and 5:30 was that the ADD medication David was taking, Concerta, was out of his system. Concerta can cause or be related to high fevers. Concerta can cause severe listlessness.

Concerta is a medication that will never, ever enter my sons body again. Thankfully this was a short lived intensely scary event. Sadly it is a reminder that David reacts oddly to medications at times.

Sunday, May 16, 2010

I'm down and can't seem to get back up again

I can't shake my down feelings. I can't seem to get out from under the black cloud. The boys are both status quo. Nothing exciting is going on with either of them today or the last few days....and now I can't get out of my own way. I can't stop feeling down,and I feel like I am living life waiting for the next bad thing, or the next hard time.

I want to enjoy this day or week or month of quiet and instead I am just passing time. I feel like life has been such chaos recently that we have just gone from chaos to chaos and there has been no quiet- we might have found the quiet and I can't even seem to enjoy it.

I am on high alert with David, watching and waiting for a seizure to hit. I can't tell how he is doing and can't get comfortable that he is stabilized- he was hating the Daytrana patch for his ADHD so we have switched to Concerta. He was so sad every night as I had to take off the patch- while I know it didnt really hurt him, he was afraid it would hurt and that was causing anxiety. The huge tears he cried as I took of the patch every night just wasnt worth it so the doctor and I have agreed to try a pill instead. He started Concerta this morning, and we had a good day, but it wasnt a well focused, attending day. However it also wasnt an unfocused scattered day, so I guess it was good.

Matthew is apparently status quo at school. I had asked the teacher for more feedback because he was spending time in the quiet room 3 of the 5 days last week, and that was of concern for me. For her this is not of concern, and I get that....at home, if we had a quiet room, he would have been there every night this week just about...but I still havent wrapped my head around the reality that he is out of control at school now also....I know it's been a year, it is time for me to wrap my head around this reality but I still remember the Matthew that no one would have believed was out of control at home. The Matthew that I tried to explain to others, because he was always perfect outside our house.....now this Matthew sems to be gone, so when he is in and out of the quiet room it is not significant enough to warrant a phone call home. Recently it wasnt even significant enough to be noted in his notebook- there wasn't time....when did it get this bad? When did he get this out of control? Why???

The highlight of the last 2 days has been that David has pooped on the toilet. He is 6.5 years old and I cheered and high fived last night when he pooped on the toilet at Border's Book Store. I must have looked so silly. How many people cheer for a six year old who has pooped on a toilet for the first time? This is my life.

There is hope, since today he pooped in the toilet once and in his pants once, that we are on the road to success, if I watch and listen closely enough to his cues. If I can get him to have success in the toilet a few more times, maybe we will be on the road to complete toilet training before he is 7. This will make him toilet trained younger than Matthew- This is supposed to be something to cheer about? UGH.....it seems so silly. I am an educator. I have been unable to train my 2 children in such a simple life skill. I know they have not been ready, and I am a believer that you cannot teach this skill until a child is truly ready...but still while I am proud, and excited to be sure, it seems like an odd thing to be cheering over!

I need to plan some fun into our lives. I need some care free excitement that we can enjoy. Today we hit a playground and that was carefree and fun for me. The boys were great, we were with friends and it was fun. Tonight we watched a movie and snuggled on the couch and that was also good. But when I am alone at night after they are sleeping I am in a deep funk. When I am not in the chaos of managing all 3 of them during the day there is no time for funk, but it hits and hits hard as soon as they are sleeping.

Tomorrow Matthew has some reshab time, so that will be good- David and Jacob and I will either nap, or maybe we will find something fun to do together. For next weekend I need to make sure to schedule something to look forward to. Something that I can spend the week getting excited about. Something either with or without the boys, but something that makes it worth going through the week.

The goal is to enjoy the easy times that come between the chaos. That time is now. The goal is to enjoy the here and now. I am going to try really hard- to snuggle and giggle and enjoy tomorrow as a regular day. That is my promise tonight!

Wednesday, May 12, 2010

coming back to haunt me

This school year started off pretty rocky...for those of you who were along for the ride, you will remember that David went to, and was asked to leave 2 after school programs. The day he was asked to leave the first program, I was angry, reacted in anger, fear and frustration, and threatened legal action.....come on, most of you would have reacted the same. Ok, maybe not the exact same, but your emotions would have been speaking for you as mine were for me.....adults had hurt my little boy....adults, who profess to CARE for children, had shunned mine....adults who KNEW as we started the year that my son struggled, had said he couldnt return to their care....how was I supposed to react? I was hurt....I reacted. I told them I was "calling my lawyer"


Apparently no one told them that! From what happened today, apparently they have been waiting since September to hear from my imaginary lawyer.

Today I called back to register Matthew for next year for this program, and the person who answered the phone hung up on me after saying they were "not allowed to speak with me"! Eight months have gone by since our last conversation. Eight months and a LIFETIME have gone by! And in reality this program is truly optimal for Matthew. It is where he thrived, and grew as a person. The care was great. The staff was always with the kids. It is a good program.

Yes, I would have liked them to try more with David. I do not believe in telling kids they cannot remain in child care at my center. Kids are kids. Someone has to care for them and as far as I am concerned there is a reason for all kids who are struggling to struggle. It is my goal to make their struggles easier. My job to alter my program to make it as succesful for each child as possible. Sure there are times when a child has to go home for a day, when they are simply being unsafe for that day, and they can come back tomorrow and try again. But EXPELLED? At the age of 5? From an AFTER SCHOOL PROGRAM? TWO hours! That was all they had to do, watch him and keep him safe for 2 HOURS!

I am just shocked and amazed that this long afterwards they are reacting today by hanging up on me! I called back and disguised my voice so they would put me through to the director so that I could leave a message. I emailed an apology acknowledging my wrongdoing. Begging them to reconsider for Matthew. We will see what happens....we will see if I even get a response.

The lesson I have learned is to vent anger and frustration silently, or at least to someone who will hold no power over you in the future. The lesson I hope they will learn is that a mother's anger is intense, BUT also should be forgiven, if not forgotten.

I am seriously geting tired of all the stumbling blocks, but especially those I put in my own way.....and the little life lessons I am constantly taught. I am working to learn patience, forgiveness and understanding. It is an area I am working on constantly.....if only I was a faster learner. If only there was a time machine to take me back 8 months. If only I knew then, what I know now, which is that for David the best thing was being kicked out of the 2 after school programs. That he would thrive and grow in the care of amazing babysitters. That in reality he isnt ready for a large group program after a long school day. If only, if only, if only.......

Saturday, May 8, 2010

leap of faith

For those of us who have been on this journey for a while, you might remember that David was taking medication for ADHD when he had his first diagnosable, obvious seizures. At the age of 3.5 David had already had 2 years of special education support, and was in an integrated classroom, and was still not learning. He was very impulsive, was not available for teaching and still after years of speech therapy was not making a lot of progress. We were seeing a Psychiatrist, and upon his recommendation we started Focalin. When the Focalin did not work, we tried Daytrana, and when that did not cause much of a change for David we tried Risperdral.

After a few weeks on the Risperdral, the teachers saw no change except he started to lose words- for a boy with very few words to start with, this was of great concern. One day he was with his speech therapist and it became obvious that he only had 5 or 6 words that he could say- the therapist became very concerned that David was having a stroke and so we rushed him to the Emergency Room. At the emergency room it was determined that he had not had a stroke, but we were told that he needed an EEG and an MRI, which luckily had already been scheduled, in order to find out more about what has happening in his brain. We immediately stopped the Risperdral, and within a week David had an MRI which thankfully showed nothing, and an EEG which showed seizures in his occipital lobe. David was started on seizure medication at this time, and it was then that the "real David" came out!

The "real David" was chatty, and more focused, and able to do things we never knew he could do. For a while he actually walked around asking people if they were mad...for so much of his early life he thought everyone was mad at him- he was forever running in the road, lashing out at people, knocking everything over, clearing the dinner talbe with his arms and generally just wreaking havoc. While we knew these things were not being done on purpose, there are only so many times you can tell a child to stop before you become exasperated and exhausted.

So now it is 2 years later and it has again been suggested that David be tried on ADHD medication- while he is succeeding in so many ways, he is still impulsive, and struggles to do most things for more than 5 minutes. No matter how interested he is in an activity, every activity is short lived. In addition, because he never gets deeply involved in an activity, he is strugling with friendships, and is at times challenging to be with.

So today we tried him on the Daytrana patch. All day I watched closely- would there be seizures? Would the medication have an effect on him? Would I notice anything? Would there be a difference? And all day long I talked myself into believing things were different- he was calmer? he did a whole puzzle.....and then I talked myself out of believing things were different....back and forth, I must have changed my mind a hundred times.

And then, we went over to see the Noonans...and this was the test of all tests! My boy passed with flying colors! Just 4 days before we had been at the Noonans with some friends, and while David behaved well, he never really got settled into any activity, and there were many moments of him nudging the other kids and being in their way. While we had a good time, it was obvious that David was struggling a little, and just didnt know how to fit in or how to interact.

Well today, WHAT A DIFFERENCE- for over 45 minutes David set up train tracks, played with the trains, and negotiated sharing the trains with Jacob and other kids as they came in and out. Then, for over 40 minutes David sat at the dining room table with the other children and worked on a workbook- he put stickers in, he shared, he took turns, he wrote and traced letters! He had FUN! He was fun to be with!

But even more amazingly, I took off the Daytrana patch at 6:15, at 7:00 David went berserk- he dumped over toys, he tried to write on the floor with a crayon, he knocked over a lamp - he was bonkers- I finally picked him up and put him on my shoulders and he relaxed a bit, but the difference was incredible and undeniable.

We will try the patch again tomorrow, and this week at school- I am not going to share with his teachers that David is trying a new medication-the only way to get true information is to hear from people who are unaware, otherwise there is an expectation to see a change. But for now, my fingers are crossed, my hopes are high, and as long as there are no more seizures than usual, maybe this is the key to more success for David.

Thursday, May 6, 2010


Tonight the boys and I went shopping for Mother's day....because my mom reads the blog, I will not divulge any important information here, however, there were some intense moments of total cuteness that must be shared!

David is a total love, although I am not sure that is how the average person would describe him, once you get to know him well, and you are in his inner circle, you come to realize quickly this is a boy with love oozing from every part of him.

So tonight we went to Moe's for dinner, and then we were going shopping. D's big thing right now is "being a gentleman". It is his mission in life to do good and to be viewed as a perfectly behaved little man. So after dinner, he cleaned the table and got everything into the garbage can, then as we were leaving the restaurant,he grabbed my hand and said, "I'm gonna bring bubbe here, she's my best friend" and looked at me with his eyes that melt my heart.

Then we drove to Michael's Art store, and D ran in and grabbed a shopping cart. As he maneuvered it throughout the store, he kept saying "I'm a gentleman", "I'm driving like a gentleman" and he was- the care and quiet of his cart was so cute as he perused the store looking for the gift that screamed FOR MY BUBBE WHO I LOVE! As we wandered up and down the aisles, D came upon these ceramic banks in the shape of a duck and he knew immediately that he had to have them! His Bubbe LOVES ducks, and they would be perfect.

After a while of searching the shelf we sadly could not find the duck and I tried to move on, encouraging David that we would find something else. David however had other ideas, and grabbed the ducks in his hand and went about finding a salesman. Now again, if you know David, he is not my public speaker. Matthew will speak to ANYONE...actually this morning he was getting blood drawn and within 10 minutes had the life story of all 7 other people in the waiting room. However David is a boy who measures every word before he speaks it. A word with David is never wasted, and is only used when he deems it important. So as he took these ducks and searched for a salesman, and then got up the courage to use a loud enough voice to be heard by not 1 but 3 different salesman, it was obvious that these ducks were important and so was his bubbe.

Sadly, each of the salesman repeated that the ducks were not to be found. They were not in the store and would not be restocked in time for Mother's day. We will go back in a week or so to look for the ducks, because of all that they mean for David. The love of a little boy for his bubbe is pretty darn fantastic....and as he said tonight "she is his best friend"