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.

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!

Reassessing

After thinking about it, which takes a lot of brain cells, I had to reassess assessments!

Are they repetitive, depressing and emotionally exhausting, YES. But on the flip side of the coin, I don't want to imagine my life without the knowledge and expertise of the professional, who by assessments can accommodate and really help my baby.

I don't like going through the process...

I really don't like hearing the results and the following steps that come after the initial tests.

It's like a blow to your abilities as a parent. A knife through your body, the body that gave life to this child.

I am however seeing progress! PROGRESS. That's the Magic word every doctor and therapist asks me about. Every appointment consists of the phrases "Are you seeing any progress?" or "I'm seeing progress!" I know it's easier for them to see strides when they only see her every 3-4 months or even once a year. For me though It's had to pay attention to the little, small progression she makes. I was trying to make a mental lists of things Maggie can do completely on her own, things she can do with some assistance, and the tasks she has yet to try, partake in, or will never do. I realized if I put her car seat in the center, allowing enough room on the seat for her to rotate her body around she can get in the seat by herself! I know, a 5 year old getting into a car seat, big deal right!?! - BUT It's those tiny steps that make the days easier, make the testing and all the assessments bearable.

10 Things being the mother of a Special Needs Child has taught me

What's so different about parenting a special needs child anyways??? As parents we all grow and learn and become stronger more amazing people because of our children and the love we bear for them. But I think the difference is that with any child, parents guide and mold who they become. With special needs children - as parents we must be ready and willing to be taught...

1. Being the mother of a special needs child has taught me patience with everything is a must. A quality that at times can be taken for granted with a healthy child…

2. Being the mother of a special needs child has taught me I do have courage to face anything. It’s okay that sometimes I need to cry, to walk away just so I can breathe for a moment. And then I am back stronger than ever…

3. Being the mother of a special needs child has taught me to be understanding of those less fortunate, or different from you, never be quick to judge...

4. Being the mother of a special needs child has taught me that while yes, there are many moments of struggles those single moments of accomplishment are so much sweeter...

5. Being the mother of a special needs child has taught me that I do know what is best for my child. Even if I have to fight the school, the doctor, other parents, the insurance company, friends, politicians…

6. Being the mother of a special needs child has taught me that hope, even the smallest glimmer of hope can be enough to get you through the day…

7. Being the mother of a special needs child has taught me that the world is exciting, beautiful and that even the smallest of things is new and wonderful. To see life through a child's eyes is special, but through a special needs child's eyes is magical...

8. Being the mother of a special needs child has taught me unconditional love which I know comes from the fact that I was chosen by Heavenly Father to be blessed with this beautiful child, for many may never know such a blessing and I can’t imagine my life without her…

9. Being the mother of a special needs child has taught me that I am stronger than I thought I could be. That I am a neurologist, a nurse, a professional fundraiser, a housekeeper, a manager, a special educator, a researcher and an advocate all bundled up into the mother you can all plainly see…

10. Being the mother of a special needs child has taught me the greatest lesson in my life. I may be many things in the eyes of others but here at home I am the mother of a special needs child and this child loves me unconditionally and teaches me so much…that is what defines me, what makes me whole and loving and open to the infinite possibilities of the world…

Dilemma

This is one of those times being a parent of a special needs child has no resemblance of being a typical parent. I used to wonder what types of sports my child would want to play or what hobbies they would like. What type of friends they would have, what I would do if I thought they had made poor choices in friends among a million other thoughts about the future.

That was long ago.

Now my thoughts range from point by point, step by step, entirely unsure about the dreaded future. Scheduling conflicts and reading food labels. Stress, anxiety and fear of how others will be unkind, even cruel to my baby. I hate that feeling. I know that for the most part Maggie has little to no desire to even tolerate children around her. The prospect of friends seems like a lost milestone and an undesirable achievement from her point of view. So you can imagine my feelings and mixed emotions when Mags received an invitation to a birthday party for a boy in her class.

Now among the Social issues there is the sensory dilemma. The party is being held at an indoor gym, a type of bounce house meets gymnastics meets pizza and overly caffeinated children. The plethora of concerns on my mind include...

• Pizza - well that's a gluten and dairy disaster I have to distract her from noticing ... I get the joy of telling her "No, sorry sweetheart BUT I have edamame, apple sauce and turkey :-)"
• Lights - often at large public places the lights are overwhelming and if they have special effects then they can be distracting if not annoying or even painful for her
• Bad Contact - Nice way of saying for when my child hits another child...
• Other Parents - this can either be encouraging or depressing.... usually the later
• Children not part of the group - running over, pushing, being rude, and overall unpleasant towards my child and her friends. Never fails going out to a public place means you will encounter some not so nice people!

Wish me luck

Changes

I spend several hours a week in waiting rooms, viewing room - enclosed rooms with a glass window- talking with parents. We talk about our children.

Not in the way other moms probably talk about their children...

I hear regular mom's talk about what their child accomplished today. How great they are doing in school. How many sports their playing.

Play dates.

A funny thing they said last night.

Their friends.

The list goes on...

But for Me - A Parent of a Special Needs Child - Conversations with other mothers in the similar boat usually consist of comparing meltdowns and calming down techniques.

Restaurants that have Gluten free/Dairy free options

Doctors we like and don't like

Specialists we've seen, or ask about medical challenges we may face in the future from parents with older kids who are infinitely wiser or better for the ware.

How lonely we are.

How difficult it is to deal with normal functioning children, who are of course perfect and we are reminded of that by their even more perfect parents...

I have decided to change my blog from simply recapping just my little family small events to a much more personal outlook on what it is really like being a parent of a special needs child.

I will try to be honest and open - which may not be pretty or easy to read. But I feel it is important, necessary even - too often I hear a sense of pity even sadness when people talk to me.

I hear all the time it is our responsibility as parents to bring 'Awareness' - I'm not entirely sure how to do that. Or exactly all that implies. But I do know that if individuals, who might read a blog, become more comfortable with children with special needs then it's worth a try.