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!

Monday, November 19, 2012

The candy store

I consistently think about my parenting and how it will affect Matthew.  I know that many think I am pretty hard on him.  That maybe I don't allow him enough freedom, that maybe I take things with Matthew too seriously.  I am a strong believer that a parent has to parent each child as an individual.  In my house, this means each child is parented fairly, but also very differently.

A lot of this stems from how I think the boys are perceived by the world at large.  Matthew comes across as much more capable than he actually his.  His IQ puts him at a level of mild mental retardation.  This is a very accurate description of his ability to cope with life, to problem solve and to participate in self care activities.  However, it is not at all how most would describe Matthew.  He is very charismatic, and can carry on conversations, and unless you have a lot of conversations with Matthew, he has enough scripts that it takes a little while for someone to learn that he cycles though a variety of scripts with each person.

This weekend Matthew and his respite worker were faced with a reality that reminded me that it is important to be firm and to continue parenting Matthew with little wiggle room.  Matthew, as we all know, has a food obsession.  He thinks about it, talks about it, lives for food!

This weekend Matthew and his respite worker  were walking through the mall and they went to check out the candy store.  While they were in the store Matthew became very focused on the skittles container.  This is one of those candy stores where all of the candy is in a large bin and you use a spoon to scoop out the  amount of candy you want and put it into  a bag.

Matthew's respite worker was looking around the store while Matthew looked around and Matthew gave the counter man an odd look and a quirky smile and apparently made the man nervous.  Matthew's hands were on the spoon and it appeared that Matthew was putting candy into the spoon and was trying to steal candy. The shop owner came over to Matthew and the  respite worker and told Matthew that he needed to wait in the store, the owner then went to the back, looked at the video and saw that Matthew had not stolen anything and he came back out front and told them they were free to leave the store.

When Matthew and his respite worker came home, Matthew quickly told her to tell me what had happened, which is wonderful.  However, as she told me what had happened, it became very apparent that Matthew was not understanding the gravity of this situation.  He was focused on the fact that I might not make him dinner because we were talking about what had happened.  He was focused on the fact that I might not make him what he wanted for dinner.  No matter how much I tried to refocus him and get him to understand that dinner is not a part of this equation, he could not grasp the gravity of what had happened.

Even as he sat eating the quesidilla he wanted for dinner and I tried to again talk to him about what had happened that the man thought he had stolen candy, I could not get Matthew to understand that stealing is a big deal.  That even if it is just a skittle, it is a really big deal.

Unfortunately for Matthew he has a few things that will always work against him in life:
1.  He is large for his age- while he is only 11, he looks more like 13 or 14, so people relate to him as if he is older and expect more from him.
2.  He is african american, and sadly, in the US, this is still often a reason for people to respond differently.
3.  He communicates well above his level of understanding.  He can look you in the face and talk and talk and you think he is understanding and he truly is just repeating what you have said without internalizing the information or understanding it for himself.

My first thought was why would the respite worker bring Matthew to a candy store.  She knows of his food obsession, it seems like a silly place to bring him.

My second thought was what happens if an 11 year old is accused of stealing?  What is the next step?  How do you convince people  that he is unaware of what he is doing, while teaching him how serious this is?

Thankfully, I also had another thought.  If I don't teach him the risks of this behavior, he will never learn.  Of course he has to go in and out of candy stores.  He has to do this as a young adult so that when he has the freedom as an adult, I have impressed upon him that he cannot steal.  That taking even one piece of candy is stealing.  That touching the candy is wrong.  That looking at the candy too long makes shop owners nervous.

As you are with us and you wonder why in the world I am so strict with Matthew, please realize that I am parenting Matthew so that he is ready to be an adult, to be able to be in the world and not eat himself to death.  So that he doesn't go table to table in a restaurant inappropriately interacting.  So that he understands how you relate with others at a dinner party, at a buffet, at a restaurant etc......  I am parenting the adult that Matthew will become so that he is ready for life in the real world.  I believe he will always need help, but I also believe he will not live with a caretaker with him 24/7, for this reason, he has to know how to live in the world, and I was given 18 years to teach him the skills he will need to do this.  I have 7 short years left, and given that times is short, I ask for your help in teaching him the rules of society so that Matthew is ready to take on the world!

Tuesday, November 13, 2012

update writing what I cannot speak

I am not writing this because I want your sympathy or because I need you to worry about us, but rather I am writing it because I simply can't talk about it all right now.  When I can't talk, I can write, and when I can write I can share what is going on inside my family without feeling judged as much as when I have to explain it to you to get you to understand.

It has been over a year since Matthew has been in a hospital and it is my hope right now that we can keep moving forward.  It has been just under a year since Matthew was in Healy house, a place that allows all of us a 3 week respite, and today I made the call to get him on the waiting list to go back.  Tonight however I realized that my son is struggling more than I had thought.  Tonight I realized that like everything in life there is a cycle to Matthew's ups and downs and we are heading down rather quickly.

It started a few weeks ago, he would get more upset than usual about little things.  He was food hording and obsessing and I thought it was just a phase.  I assumed it would pass.  Then he and I started arguing more....I would say black and he would say white.  I would say up and he would say down.  Then on Thursday he got angry and got a little bit physical with me.  Nothing major, he just threw a toy.  Then we had a fabulous weekend.  I thought for sure things were looking up.  We had a wonderful time with my extended family and I thought the cycle had ended.

On Monday we were home for Veteran's day and things were going so well that I kept Matthew home for the day rather than sending him to the YMCA for a child care program.  Then at around 1:30 things started to plummet.  I went to the car to tke the boys on a  playdate and I told him it was time to come.  He was in the house for a few more minutes and said he was looking for his Ipod.  Turned out he came out to the car with his pockets full of food.  I hadn't locked the lock box because we were leaving.

I told him that he had made a bad choice and he started to kick and hit.  I told him he would sit at the playground and he screamed.  He got out of the car at the playground but then when I was firm and told him to go back, he went back.  I still thought maybe we would be ok.  After the playdate where things went pretty well, we went to the grocery store.  Jacob and David wanted a cookie at the grocery store.  I had the internal mom fight- it wasn't fair that they couldnt have  a cookie, but Matthew had been told he couldnt have one as part of the consequence of putting all of the junk food in his pockets.  I knew giving them a cookie would cause a tantrum, but was it fair to deny the other 2 a cookie?  It was the grocery store routine.  I got them both a cookie and Matthew said he understood, and then out of nowhere his anger took over and he kicked and screamed.  The panic that takes over the other 2 in these moments is so intense.  It is not normal to block your child with a grocery cart so he doesn't hurt your other children.  But for a child with FAS, anger is anger and when he is angry Matthew sees no consequences to his actions.  As quickly as the anger came on, the anger subsided and matthew cried and apologized and it was over.

Today things had gone well in the morning. I thought we were doing well.   I went to pick up Matthew and Jacob from the YMCA after school and there had been an announcement that there was to be a pizza party on Wednesday at the Y.  Matthew doesn't go to the YMCA on Wednesday, Matthew goes to Hebrew school.  As soon as I walked in, I could see he was stewing.  I knew he was upset, and it only took a moment to find out why.  He wanted pizza on Wednesday, he didnt care about hebrew school.  He didnt care about anything.  He wanted pizza and that was all he could see. 

I was firm, I was calm, I was patient.  He had hebrew school, he would have pizza another time.  No, I would not change my mind.  No, he could not stay home from hebrew school for pizza.  We walked to the car and he hit me.  We walked to the car and he kicked my leg and screamed curse words that you would usually hear from a sailor.  We walked to the car and I held Jacob's hand and reassured him.

Finally, after what seemed like forever he got in the car, and after a few moments he cried and cried.  The tears of a person with a mental illness.  The tears of a person who cannot control themselves.  The tears that break a moms heart.  The tears that tell me he needs help.  The psychiatrist is away until Monday.   We have an appointment on Wednesday, but will it be soon enough?  Will the darkness go away as fast as it has come?  He missed last Thanksgiving with us.  Will he be safe enough to be with us this year?  Where is there help?  I hate to go down this dark road again.  I hate to see him struggle with is demons. 

We will be ok, I know that.  I know that mental illness is like any other disease and I will get Matthew the help he needs.   I will keep life consistent for David and Jacob and myself because we deserve that.  I will get Matthew help and stay calm and be patient because that will help him.  I am hoping that we can make it to the appointment with the psychiatrist on Wednesday, that she will make a medication change and he will feel better.  I hate to see him shake with tears, and to know that he hates exploding with rage but at the same time he cannot seem to stop himself.

Sunday, November 4, 2012

The roller coaster of our life

We have had a pretty smooth start to the school year.  All of the boys are doing relatively well. Matthew started in a new school and Jacob has started Kindergarten, so given the major life changes going on, I am happy to say that the past few months have been relatively calm.

Unfortunately, when life is calm I forget all that can go into running our lives when the roller coaster of our lives gathers steam.  I don't know exactly what is going on with Matthew but the last 3 days have been intense.  He is so hyper focused on food right now, it is all he is thinking about, it is keeping him up at night, and overtaking his entire days.  His obsession over food will always be more powerful than my ability to think one step ahead of him and prevent him from wreaking havoc in the house.

As he is getting older he is getting just that much more clever.  He knows the complete and total inventory of every food item in our house and it seems like he waits with baited breath for me to walk away or leave something out or open.  Twice this weekend he has asked for a drink which I have of course allowed, only to find him elbow deep in a container of chocolate or shoving candy in his mouth that I had mistakenly left out.

We made pumpkin bread and he told me that he was going to leave it alone.  He wanted some for school the next day so he would leave it, and no sooner did he say this then I left the kitchen and he devoured and destroyed all that was left.

I try to keep as much of the food like cereal, bread, bagels etc... locked up so that he has limited access to snack type foods.  I never thought we would live like this, but if locking food up ends the fights, it makes sense to lock it up.  However, he checks the locks hundreds of times a day.  If I unlock it to get the bread to make lunch, this weekend he has snuck behind me to find something in the lock box.  It is exhausting.  It has been a while since we have lived like this.  I had actually been debating starting to leave the lock box unlocked because things had gotten so much better, so to go back to life like this is emotionally and physically exhausting.  I have to be one step ahead, but it is one step ahead of someone's mental illness and obsessions.....that is hard to be.

In addition, he is talking about food non stop.  He is talking about food so much that I  am constantly feeling full.  Not because I have eaten, but simply because if you talk about food enough, I am realizing that one becomes consistently not hungry.

I hate seeing my son like this.  I hate seeing him struggle and I hate being so overwhelmed by his struggles.

There are no books that tell me how to wind my way through all of this and to find a path that will guide us all through this successfully.  I constantly think how crazy it is to lock up food, but then again how crazy it is to not lock it up and to instead have constant turmoil.  I have thought and debated about what would happen if we simply had no food that Matthew would crave, but if it isnt one thing it's another.  Sure, he has a pecking order, carbs are at the top, but if we had no carbs he would drink a gallon of milk.  If there was no milk, he would eat dried fruit by the truckload.  If there was no dried fruit, he would eat cheese sticks.   Whatever there is, the obsession is deep.

Hopefully soon the weather will change and the obsession will stop, or he will again find peace.  Hopefully this is a little tiny blip on the radar and we are not entering a dark place.  We have done so well for so long, I am not ready for major struggles again.