Money and all things expensive

I recently read in an online newspaper that the average child in the United States costs approximately 275,000, from birth to 18, which means this does not include college. This number included basic, but not outlandish housing, food, clothing, medical costs, school supplies etc. It did not include private education, over the top vacations, or any unusual medical costs. A few weeks ago in the Parade Magazine was an article on Autism and the financial cost on the families. 1.5 million. One of the key differences was that the child lived with the parents far beyond 18 and the medical costs were incalculable to average. Those children with medical/physical disabilities are even more of a financial burden.

I know! I know I'm preaching to the choir!

Children are expensive and Special Needs children require so many costs I never thought I would be budgeting...

Food, of course but a special diet where every product averages 4x more expensive... No
Diapers - sure until 2, Maggie is 5 and toilet training is not in the near future
Medical Insurance - I assumed I would be able to work allowing for an employer to contribute in part or provide insurance. And I thought I would have a deductible of 5,000 and never pay it every year... HAHA
So the idea that my child has 2 insurance providers, 2 premiums, 2 deductibles - and uses them - is daunting.
Childcare - I was lucky and had amazing people through church help me whenever I needed it but I know this is a huge expense for the average family and at a certain point, it's hard to find care, or PCA's or anyone who is able and willing to help watch your child. It gets harder and harder to have breaks - which are priceless!
School - public school is not an option, and fortunately private at the moment is through insurance but the future is uncertain..

The future, long term planning is going to be my best friend and enemy! A daunting task I alone get to take on!

A side note to single moms -
Child support is nice even necessary, but never depend on it.

A Fantastic Day!

It's a rare and wonderful thing when I get to have an entire day to relax and spend time with only one of my younger brothers. It seems I am always driving them to school or sports practice or art classes or faith formation OR... the list goes on. but due to conflicts and Maggie being at therapy all day Uncle David and I were able to enjoy the company of each other! I asked him what he wanted to do and without hesitation he said I would like to try sushi and go to the Minneapolis Art Institute.


I took him to a local small sushi bar that I really enjoy and ordered about 6 different rolls for him to try. He scarfed them all down, but concluded that he likes hot japanese food, hibachi, but likes the sushi too... I just love the fact he is so willing to try anything!

I love Minneapolis Museums - Minnesota is known for creating and maintaining top of the line museums and the Art museum is no different! It's front entry is impressive and screams "photograph me!"
We had a blast goofing around and taking pictures of each other - it also lead to a perfect opportunity for us to talk, which is impressive for any 14 year old boy!

Realistically with all of crazy summer plans, vacations, and school fast approaching I know this days are not as often as I would like - but that's why I cherish and hold on to days like these - as Van Morrison would sing!


I'm that person!

I can't help but judge and think about how I would handle the situation when I see flat out terrible parenting! I don't mean overwhelmed or in a single moment maybe slack off in a teachable moment or stressed "Yes, you can have the chocolate" parent. I mean the lazy, allow your child to do anything and get away with everything parent. And when that parent, more importantly their offspring affects my child - I step in! Case in point - I'm sitting in a waiting room waiting for my child to finish therapy and mother with her 18 month old son sits near me and begins to talk to the moms in the room. Her son proceeds to pull every book off of the shelf and throws them around ( I grew up an English teachers daughter, we always respected books!) Instead of dealing with this child, the Mom just smiled at him. He then climbed on the table and started screaming... These types of events continued on a daily bases for a week or so, I never said anything but I'm sure my face was not covering up my feelings for her in actions.

Yesterday when picking up my child she noticed this little boy and his behavior and she decided to imitate him...

I was not amused.

I told Maggie in a firm voice, "Get Down, You do not climb on the furniture" She whined and got down. She then started taking books and throwing them. I took the book from her and said "NO! You are not allowed to throw books. We read books,k one at a time. Help me clean up! First Clean, Then look at. You may pick out a book to look at." I must have shot this mother a look because she wold not make eye contact with me after this short and sweet conversation with my child.

I'm not sure if she was embarrassed or annoyed with me but I was not going to let her child's poor decisions affect my child!

That's my rant for the moment!


Maggie's Story

Recently I have been overwhelmed by how many fellow bloggers, Family's and Friend's that have started reading my blog and find something they can relate to in it. I have also received numerous emails and comments asking such wonderful and important questions - And I want to answer everyone of them! But I should probably go more into Maggie's story and how I got to this place to fully answer all of those questions!

February 3, 2006 , 2 weeks before my due date had the most uncomplicated and probably the most by the book first delivery a mother could wish for. I was induced at 2pm and my beautiful daughter entered this world at 6:30pm. All her vitals and testing were normal. She slept well, ate well, was well sized, long and perfect! Baby Magdalaina Elizabeth.

At her 6th month check up, her pediatrician noticed that her head was 2 standard deviations below normal (which I learned was a bad thing later...) She smiled at me and said don't worry it's probably nothing.

At 12 months, My child was visibly behind her peers. As a first time mom I felt it was my fault I wasn't teaching her the way right or I had done something wrong. Maggie's cousin was 2 weeks to the day younger (they were due on the same day) He was walking and making sounds. He was bigger and stronger, his family would reassure me by saying it's just because he's a boy! Maggie wasn't even crawling...

At 18 months my life started to change, Maggie began to crawl, slowly but surely. The state started to do evaluations for Early Child Intervention and to no surprise Maggie failed every test and was recommended for Speech, Occupational and Physical therapy. At that time those words stabbed my heart and made me feel like a failure. Maggie was 19 months before she attempted to walk and it was a very slow, step by step month after months almost 2 years of practicing before being comfortable on stairs and walking by herself. At 23 months she was evaluated by an opthamologist, and he determined that she needed surgery for a condition known as Strabismus (which is common in children with Cerebral Palsy) Almost on her exact 2nd birthday Maggie had her first surgery. I was trying to be calm and in my heart I knew this was a simple procedure. General Anesthesia was involved, her first time. I always thought this happened to other Mom's. Or Perhaps I was being punished. I just knew I was so excited when she woke up and was crying, a good sign of her breathing...

After the surgery it was clear by all her medical physicians that more testing needed to be conducted. At 2 years old she had no words or sounds. Mood swings and meltdowns for no apparent reason. Odd tendencies for obsessive behavior. Mouthing absolutely everything. She ate solid food but small bites and hard to get her to swallow certain textures. She was a good sleeper but I lost so much sleep worrying if she would wake up or not. Going out to public places became more and more difficult. Her eye contact was good - So I told myself it can't possible be Autism... (To me that is the diagnosis de jour, every other kid has that) But I knew in my heart of hearts that something was wrong.

This whole process took a serious strain on my marriage and after that fell apart I moved with this tiny 2 year old back into my parents home to try and figure out how to help her and to give her the best services I could. And If your going to have a special needs child, then move to Minnesota! Within a week I had her into the best geneticist and diagnostic center in the country. We met with the doctors and all the questions were about her history, her development or lack thereof, her milestones, my pregnancy, my life... I was completely honest and trying to remember every detail of what she had done, not done what I did or didn't do and I felt like I was in an interrogation room on one of the cop shows... I took the blame so personally. I still do.

At 2 years 8 months, Maggie was given the diagnosis of Autism with the recommendation for further evaluation. There was a sense of ... Okay now we have a name and we can get services, or when I'm asked about her I can give a concrete answer... but I knew that the next part was going to be the hardest part.

I met with the geneticist and She had several ideas all of which required blood work so we decided that one draw would be better than 5. After an excruciating blood draw she ruled out fragile X, chromosome abnormality, Imaginary Down Syndrome and Cerebral Palsy. Her final guess was Kabuki Syndrome - Which she described to me as Down Syndrome Medically with Autism socially - but to determine if that is what she really has we need to do a CT, Heart Echo & Upper GI Scan - Maggie had already had bouts of diarrhea, constipation, vomiting, blue fingers and turning hot/cold easily throughout her short life thus far. All of these tests made sense and on the surface I said "Yes, whatever it takes!" But in my gut, I wasn't sure if I was ready to know the answers.

Early one morning I took Maggie to Children's Hospital they put her under and escorted me to the waiting room. I was so anxious and all alone. Physically alone yes, but I felt more alone then I had in months... What if they find something? What do I do now? The Doctor came in and asked me to come into the room. Maggie was sleeping peacefully and the doctor told me they would have the results in a few hours. I picked her up and held her so close to my chest and all I could think about was the E. E. Cummings 'I carry your heart with me' poem... I received a call later that afternoon that Maggie did in fact have 2 small holes in her heart that confirmed that she had Kabuki Syndrome and that further tests were required.

This was the beginning of countless appointments, Specialists from Cardio to Ortho, Nutritionists and Therapists from Occupational to Speech. Clinics and School district evaluations. IEP's, IQ tests, Psychological exams, adaptive testing, adaptive equipment (Maggie has In-toeing, Clonis & Hypertension - all connected to the KS) such as her twister cables. I spent 2 years filling out forms, taking her to the doctor, holding her down while they drew blood, crying, meeting other moms in similar situations, & feeling absolutely alone.

For the first time in 5 and half years I feel like I am actually getting somewhere, Maggie is making progress. She is developmentally a 2 year old and throws fits as one. She is a picky eater and we jokingly call her an Italian supermodel. She constantly has a chewy in her mouth (which her SLP has said is a good thing and her drooling has gotten better, not ceased but maybe one shirt a day verses 5) She can point to what she wants which took till after 3. She is opinionated on her music ( she loves Adele, Bob Dylan, & Glee version of Billionaire) She cry's and freaks out if a song is in a minor chord, I believe she has perfect pitch and strong music abilities. She has been riding horses for 3 years and loves it! Her balance is better, her strength has improved and her love of animals is stronger. She loves football! She has 5 signs that she uses consistently and is working on 3 more! She is nonverbal at the moment but she still sounds like a Minnesota Jewish Princess, when she says things like "Oh no!" or "Oh Geess" or my favorite "OY" - reminds me she actually is listening to me...

The past few years have absolutely been the hardest few years of my life and I wouldn't wish this trial on any child or parent but I hope that I am made a stronger person because of it! I don't worry about my child, she is closer to her divine creator than I could ever dream of being :-)

I hope that helps some of you in your journey to come. It isn't easy. It's filled with tears and self doubt but I please ask me questions or just leave your comments I love knowing I'm not alone in this trial.

A Year In Pictures

The End of Year gift from Maggie's Class to the parents was a book of pictures of their children in various activities - Very creative and wonderful moments of time captured that I was not able to see in person. Enjoy a lot of pictures of one cute kid! (but I'm not biased... :-)

Look at those long fingers...

Sorry, I had to take pictures of the pages and then close ups...

Love, LOVE, LOVE this picture!

Thanksgiving :-)
My Lil Santa

No surprise... Vikings!

Big Laugh and Bigger Smile for such a small girl

Thank you wonderful teachers & supportive friends!

My First Car

My first car was a new VW Bug, shiny Navy Blue with tan interior, awesome sound system with 6 CD changer, a vase for my fake flower next to the steering wheel. My Parents gave me the car on one condition - that I drove my younger brothers to school and any activities. David was in Kindergarten and Andy Preschool. The first thing I did after the initial excitement was to print up rules to "Myky's Car" I still have a couple somewhere, but I went to the trouble of laminating them at my mom's school... No Food, no Drinks other than water, I choose the Music - will accept requests (My brothers went through a Maroon 5 phase where I heard 'The phone song 5,000 times) I was tough and sometimes mean but always loving and an awesome sister!

My have things have changed... I drive so much with Maggie and usually she's very good but when she requests cereal I'm so proud she signed I will give her what she asked for. And she's not a clean eater... My Car usually smells like peanut butter panda puffs despite my efforts... And if she doesn't like the music she lets me know!

I used to waste a lot of energy worrying but I got over it! I've resolved the fact my life may never be clean and organized again - Life with children

Uncle David's Graduation

Uncle David is officially an High Schooler! He graduated from All Saints Middle School a couple weeks ago and I am so proud of him for being an awesome brother and a patient, loving Uncle! At 14, he is calm, attentive and caring towards his niece. He has chosen friends who are also respectful and inclusive towards her. He will be attending Holy Angels High School next year and I am excited that he will be playing Soccer (which he loves!) but he is also excited over another aspect of this wonderful school. Younger siblings, or nieces are encouraged to be a part of their families involvement and are considered "Honorary Angels" - All this means is Maggie is welcomed and always invited to attend games or practices. A friend of mine even made an adorable Cheerleader outfit for her! We are extremely proud of David! He has grown so much sense being "Baby David"

And yes he is just shy of 6ft... Crazy!


I know how you feel. You tell yourself "It's ok (my child) will get there in their own time. I shouldn't compare them to their siblings or other children. Their unique, special. Deep Breathe What can I do to help, to learn or to be a better parent of a special needs child?" (And then stop yourself from thinking, "It's my fault")

In my few years with Maggie, I've learned it's nearly impossible to get her to do what you want her to do, she will only do what she wants to do! And she is not interested in putting beads on a string or stacking 4 blocks... Hand over Hand annoys her that I'm touching her. Dozens of therapists have lead to progress yet there are still tasks I know she can do that she just doesn't want to! Drawing or coloring is a big one. But puzzles have always been challenging. The piece has to be perfectly in place to fit and the little red nob requires pincher grasp , least favorite, and it doesn't have the most exciting end result seeing as you are basically covering up a picture with the same picture... BUT this most annoying puzzle makes the sound of the animal if she fits it in the right spot! Brilliant! The motivator she needed :-) A friend of my dad's gave this to Maggie and she loves it.

Only downside is that it will randomly makes noses when we walk by it.... Oh Well another amusing aspect my life :-)


Attends to a task...
A) Sometimes
B) Often
C) Always
D) Never

Well... If you ask me this question in the context of a task that Miss Mags is not interested in then of course it's D. But if it's something she has interest in then possibly A. But if it's something she loves that is a whole new level of attending to a task that is amazing! I have spoken before of my love affair of all things APPLE and the iPad is no different! It is amazing how a meltdown to calm happy child with a touch of my finger to the screen. And football has never failed me yet! Gosh I can't imagine how my kiddo will do if the selfish owners continue their dumb strike and there is no football this fall, I may have to take her down to the headquarters and let her meltdown for them... whatever it takes! But I digress, I am shocked and so impressed by her ability to focus, pay attention and understand what she is watching! It's incredible to me :)

After an hour she is still watching and getting excited at the correct points, signing touchdown when the receiver crossed into the end zone.
Perhaps in 20 years we will have woman referees...
(always with chewy in hand...)