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!

Saturday, March 27, 2010

I hate when I lose my cool

Today was just one of those days...I woke up on the wrong side of the bed, another 30 minutes of laying around would have been amazing, and yet, we just didnt have that time in our day....so instead, we have all paid for my frustration throughout the day. Yep today was one of those mom days when the kids could do very little right....

Now, before we let the kids COMPLETELY off the hook, please know that there was plenty about today that I had every right to be frustrated by.....let me detail it all for you....
1. It is not cool to wake up and find your 8 year old eating doritos on the couch.
2. It is really not cool to find your 8 year old eating doritos on the couch and knowing he shouldn't
3. It is not cool to find your 8 year old eating doritos on the couch, knowing he shouldn't because you did a fun eating healthy foods project the night before, which has now obviously taught nothing.

Fast forward 3 hours:
1. It is not cool to try to grocery shop for Passover foods in a ridiculously crowded grocery store.
2. As you leave the grocery store and announce to the kids that you are stressed and tired, and your 3 year old is crying, the 8 year old should not choose that moment to announce that he has drawn with a pen on the seat of the car.
3. The 8 year old should really have a better reason for drawing said house on the car seat than, "I didn't have any paper"

As punishment for said drawing project, I decided it would be a great idea that we would CLEAN the car----however, sadly, when I choose to clean the car, that almost always means taking the seats out, emptying the entire vehicle and really deep cleaning the car.....This project took an hour!!! As we went through this hour, in the same hour, we had a toilet overflow, and the battery on the car died....

So, it really wasn't my day, it really wasn't my fault. You will all understand why when that same 8 year old decided to use qtips to again clean his ears, that I had told him this morning he is NOT to use, and also NOT to flush down the toilet, I lost my cool.

Good night 8 year old, let's try for a better day, but let's also stay away from q-tips, pens, cars, grocery stores, doritos, and me when I am in a cranky mood......

Sunday, March 14, 2010

Frustrations in the key of life

I want to focus on the good and not the bad...but sometimes it is just impossible.

I really wish that if people did not understand me or my boys that they would either take the time to research epilepsy in children or fetal alcohol syndrome, or pick up the phone and ask questions...but to simply jump to your own conclusions truly can have intense effects.

I realized this weekend that the parenting part is not the hard part of my life, it is the "other stuff" that comes with parenting. For example, I have no problem being with the kids all day, but being with the kids all day and THEN having to do the toy clean up is hard. The other thing that is hard is not having that person who you can check reality with. You know if you have a partner in life, that if something upsets you, you can chat with them about it and either they make you feel better, tell you to get over it, or take action with you.

As a single mom with so much daily shit, there is no one at night who's job it is to share the stress or the worry. there is no one who I can say, "your turn" I am not calling doctors tomorrow, you do it. Or, hey hun we have a CSE meeting and it is going to be intense, when you see me getting upset,will you please jump in and form rational thoughts so that they will listen to you.....

So here is my list of things I wish everyone knew....
1. My boys are MY BOYS. They found my family for a purpose and I would never, ever for a minute wish anything differently. Even when life has been the hardest, my boys are mine and I am thankful. And even if it is not what you hear, I am truly, truly blessed...but people don't walk around saying how blessed they are...wouldnt it be cool if that was the NORM? Rather, you are likely to hear when something is hard or stressful....but in all honesty, I cherish my life, I cherish the little moments, and I laugh often, that is a good life!

2. Brain damage is an intense thing to live with. Life doesnt make sense for children with brain damage, and they can look like they understand, and completely and totally DO NOT understand. And they can look out of control, and truly be doing well, or vice versa they can look like they are fabulous and only be 10 seconds away from a true nightmare.

3. Doctors do not know much about brain issues. Every person with a brain disorder is a unique individual, and the parts of their brain affected are different. Brain issues for my boys change daily, minute by minute. So, if you think you have a new strategy, I likely have already tried it. If you think I am doing something wrong, talk to me about it, you might be surprised at my answer. On the other hand, I AM OPEN TO SUGGESTION and reminders! But be kind, be gentle and approach me privately, away from my boys.

4. It is not possible for 1 person to police any child with special needs all the time. It is REALLY NOT POSSIBLE for any 1 person to police 2 children with special needs and a toddler at one time. But I am doing my best. If you have a suggestion for how to better do something, please let me know. But if I suggest that the an unsafe item go away, it is probably because there is a really good reason. I have to have a safe environment surrounding my child becuase it is like having 3 18 month olds at times, I am responsible for creating a safe world because the boys are not always able to make their own world as safe as other children their own age. Their interest and desires outweight their ability to follow rules.

5. Just because you can't see their disability doesn't mean it doesnt exist. For M and D their disabilties are hidden but impact all of their lives in every aspect. If they looked more disabled, it would be easier. If they looked more disabled we would all have a constant reminder of their needs. Instead, I am the constant reminder, I live life constantly reminded of their limitations. Please don't fight with me over my rules, they are an important part of our life!

6. I need as many people in my corner as I can get. I treasure the times that friends have taken one of my boys for some alone time...what a treat for M, D or J to have 1:1 time with an adult. I treasure the people in our world who love us for who we are! If you get to know us, we are bound to impact your world....definitely we make an impact, my hope is that it is a positive impact!

Thanks for listening!

Saturday, March 6, 2010

punishing asthmatics for not breathing

that sounds logical doesnt it? How about punishing a diabetic for not managing their blood sugar appropriately? Ok, ready, how about punishing a child with epilepsy for acting impulsively and not responding during a seizure?

Yep, that is what is going on with D at his school. Poor little man lost "treasure" 2 days last week because he was being impulsive and not listening to the teacher. Now I could care less about the treasure itself. What I care about is the fact that he knows he didn't earn treasure but has no idea why. He has no control over his impulsivity these days, and is a maniacal ball of energy....or to say it another way, he is the D that lived with me for 3 years BEFORE seizure meds.

The babysitter, who is has done amazing with for months now, is struggling and cannot get him to respond, he is a maniac on the bus, and now he is also "not listening" at school. Do we think the teacher might want to tell his mom? Do we think we might want to give mom information so she can touch base with the doctor? NO, of course not, let's just take away the boy's treasure and see if he does better.

GRRRRRRRRRRRRRRRRRRRRRRRRRRRR I truly wonder why life ALWAYS has to be hard....can the Bloom boys please catch a break?

Wednesday, March 3, 2010

anxiety in the form of meetings and a court date

I am glad that I had everything scheduled on the same day, however what a day it was. My morning started off with a pre-cse meeting for David. Basically this was an opportunity for me to meet with D's teachers, and OT, PT, and speech teacher to determine where his skills are right now, and what kind of classroom he should be in for next year.

All in all it was a decent meeting, although there were a few frustrations. I wish that he could have more OT and PT in the Fall. I really think that his motor skills are his major delay and he will need intensive therapy to meet these needs. However there are limitations that define how much therapy a child can receive, and so we are stuck within those limitations.

Secondly, it seems as if D's teacher sees a totally different child at times than the rest of us... in her world he counts to 10. In my world we are lucky to get to 3...however him counting to 3 is amazing to me. It is more than I had thought and should be celebrated.

I will have more fighting to do as we go into his cse meeting next week, but for now, all is quiet and I feel like he is in a good place.

Meeting number 2 was M's CSE meeting. I love his teacher. She "gets" him. She wrote a great report, explained wehre he is at, what areas he could show growth in, and has presented a thoughtful plan for him for next year that sounds right on target! It was wonderful to spend over an hour hearing about how he is doing, and learning about her plans for him.

Then it was time for the BIG COURT DATE. For those who have not been on this road with me all year, D was expelled from the YMCA after school program after attending the program for 3 short days....I was with him the majority of the time...however when I wasn't there apparently he struggled or should I say THEY struggled.

Anyways, because there was so much of a struggle to enroll him in this program, and the fact that he was dismissed after 3 short days, I filed a suit with the Division of Human Rights, as I feel he was dismissed from this program because of his developmental disability and his diagnosis of epilepsy.

We spent almost 3 hours in questioning as information was gathered regarding D's behavior at the program, and the process of dismissing him from program.

All in all, I was able to leave feeling like I believe he and I were discriminated against due to his diagnosis of epilepsy. I am not sure whether or not that will be the finding of the case. However, whether or not the case is found in our favor, I believe that the YMCA did not offer him appropriate support and did not allow him enough time in the program to determine whether or not he could succeed. For this, I will always believe that the Y failed my child, and failed children in general.

Children are young, and need support and love from all the adults in their lives. The YMCA caused hurt and pain to D and treated him unkindly. That is not the purpose of any after school program, and for that there should be something that can be done. Even if all that changes is that the YMCA becomes more aware of how children with special needs can be accomodated in their program, I will consider that a win, and for that I will be very, very proud.

The results of this portion of the case should be determined by the end of April. Keep your fingers crossed that the YMCA is made to take notice that kids are kids, disability or not!