A collection of stories and resources for moms who have kids with special needs.

Nutrition PlateSuper Healthy Kids Website

I wanted to share this with everyone.  I just found it last night.  I was laying in bed, my mind spinning like crazy and started another research on healthy recipes for my kids.

Ben is four years old and has an abnormal growth syndrome.  We’ve been to the geneticist, have had several labs done and may have to go up to Maryland to the National Insitute of Health for a diagnosis but anyway, his brain doesn’t know that he has already eaten and so he is constantly hungry.  Plus his body does not break down sugar properly so he can easily pack on the pounds.

Ben’s ADHD medication worked well for him (curbing his appetite) but it’s not working now.  He has been very hungry for the last week or so and broke into our fridge last night (and this morning) and ate 8 yogurts all together and scarfed down 3 big oranges.

I stock the fridge with healthy foods, but he still can’t eat them all!

My other son Jason, is an extremely picky eater!  He has a sensory procession disorder and will hardly eat anything.  His healthy choices include apple slices, bananas and grapes, peanut butter and jelly sandwiches and water.  Other choices are goldfish, pop-tarts, mac & cheese and pizza.  I make homemade pizza (trying to give him a healthy option).  He refuses to eat homemade mac & cheese or anything else that I cook too.

So to add more variety and more healthy recipes I found superhealthykids.com and it is wonderful!  There are tons of great recipes, tips and ideas on how to get your kids eating more healthy foods.  There is also a products section of plates and cups designed to teach kids about portion size and healthy choices.  I’m ordering this family bundle tonight.  My husband and I will use these plates as well to show our kids that we are all in this together.  The products page is here.

They also have meal plans that you can purchase (up to a year’s worth) and free downloadable menu’s and recipes.

I’m not an affiliate at all, I just found this last night and was really excited about it.  My kids have a delay in their cognitive abilities and I think the use of the plates and water cups will really help with their understanding of healthy eating and portion sizes.  Ben needs to not over eat and Jason needs to eat!

If you try this out, let me know how it worked for you and your family.  I will post the pros and cons of how the recipes turned out for our family soon.

The first recipe I would like to try is the Breakfast Berry Bowl!

Maryann Matas

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Mother LionMy neck is stiff from poor sleeping last night, my heart has been pounding for the last few days because I am worried about both of  my little boys.

I was up late with Ben because he spiked a fever and I was concerned that he would have a seizure again.  He didn’t, thank goodness, his anti-seizure meds worked.

I was also worried about a school meeting scheduled for the next morning.

I had a triennial meeting today about Jason.   I was expecting one person since we just had his IEP meeting a few weeks ago.  I walked in to the conference room and was greeted by six people.  These six people will determine the needs of my child and I silently go into “mother lion” mode, ready for battle, because I always feel like I have to prove a point and fight for services even though he does receive services already.  These meetings determine the continuation of services and eligibilty for additional services, so I never know what to expect.

Certain pediatricians and specialists warned me about the school system as well, citing that because of an overwhelming amount of children with special needs the school system often pushes kids out of services or denies services in order to get new kids in.  Let me tell you, that is what keeps me awake at night pretty often!

For example, I spoke with Ben’s teacher about his need for OT services because he has low muscle tone (diagnosed by a specialist).  She said she would have him evaluated by the school OT.  Well two months later we have Ben’s IEP meeting and she only JUST mentioned my concerns to the school assistant principal ONE week prior to our meeting.  So he was NEVER evaluated.  I was furious because I was also told that the school has another 65 days to complete their evaluation, so now by the time they get this done school will be over for the year and he will NOT receive the OT services that he was entitled to!  Talk about an angry momma!

The assistant prinicipal apologized for the mistake and the teacher claimed that she was not at fault…but the bottom line is that Ben has been neglected.

See I went throught the same process with my other son at the same time.  His teacher made sure he was evaluated prior to the IEP meeting but then they pushed the IEP meeting ALL THE WAY to his yearly date instead of earlier like I had requested.  So he as well did not received his entitled OT services until the very day of the meeting.

Legally, I have the right to ask for an early IEP meeting, which I did.  I was told “we’re scheduling it soon” and then “we have a computer glitch” and so on.  Magically the IEP meeting landed on the yearly date.  Conicidence?  I think not.  The school pushed me aside and scheduled the meeting for when they wanted, regardless of Jason’s needs.

As of now I am still waiting to have Ben evaluated for OT and I requested services for him back in November!

So how am I suppposed to trust the school system in making sure that both of my boys are being taken care of?  I also would like to know how to do it in a manner without coming off as a…”you know what”.  After three and five years of services and my boys are still significantly lacking in many areas, it is my duty to demand and make sure that their needs are being met.   I question the schools every decision and stay on top of them with emails and phone calls, no matter what they think of me.  I have to now.

Here’s another example with Ben’s teacher again.  During his IEP meeting it was determined, by her, that he did NOT meet criteria to be eligible for ESY (summer school).  Before I could even speak the assistant prinicipal actually gave reasons that he should go to ESY and he was accepted right then and there.  Had she not spoken, my point of view and concerns would not have been listened to and Ben would not have been granted ESY services, because the teacher has the say, not me!

Isn’t that incredible?  He would have gone the entire summer without any services from the school.

Thankfully, both of my boys will be going to ESY.  It is actually a financial hardship for us because I would have to pay for full-time daycare in order for me to work outside of the home.  Even though the ESY is free I would still have to arrange for daycare from the time they get out until I would get off work and pay full-time fees.  The boys also have other therapies and appointments outside of school hours so I’m a stay at home mom and have been since they were born.  I have an online transcription and typing business to help supplement our income but I don’t make a huge salary.  Sometimes I miss being around other adults, besides the specialists!  But this is what my boys need from me and I’m grateful that I can be there for them.

The meeting this morning went pretty well, it ended up being more of a formality.  I wish I could have asked more questions but we were out of time and they had another meeting.  Jason will still receive services and we’ll meet during the summer to make sure all is ready for him when he goes into kindergarten this fall.  He’ll be almost six years old by then.

All I want is the best for both boys.  I want them to know that I did everything possible to ensure a proper education, a happy and healthy life and that I provided them with the tools to learn and grow within themselves.

I’m their mom, it’s my goal in life.

 

Maryann Matas

Speech and Language for Kids

Me & Ben

A great website that I found today http://www.speechandlanguagekids.com/, by Carrie Clark, Speech Pathologist.

Go to this site to see many articles, tips and advice on how to provide speech and language skills and activities for your children at home.

As for my experience, in helping my boys with their speech, it’s an ongoing process.  It has been since they were babies.

Jason was always quiet, he smiled and laughed, blew strawberries, and babbled occassionally but he was born with acid reflux and blocked tear ducts in both eyes.  His eyes caused him a lot of pain.  They were swollen at times, irritated, etc., despite the medications and care we took.  With his acid reflux his throat was often sore, again, despite the mediations.  So he wasn’t too thrilled to talk…we thought, along with his doctors, that he would get better and catch up on the talking.

His tear ducts and acid reflux did clear up between 8-10 months of age, but talking was non-existent.  We started to teach him sign language so that he could communicate and feel that he was being understood by his parents.  As time went on we decided that he was in need of a further evaluation.  We saw specialists who were convinced that he had Autism but he never quite fit on the spectrum.

He was eventually diagnosed with Developmental Delay and has been receiving Early Intervention services since he was a about a year and a half old.  I’ve spent countless hours researching what to do for him for his specific age and as he progressed.  What types of toys are beneficial, activities, bathtub toys, night time routine, etc.

My biggest stress and concern was his social skills and communicating especially on the playground.  Jason is a very happy kid and enjoys being around others but he doesn’t know how to initiate play or respond to a child who wants to play with him.  It breaks my heart to see a little boy come up to Jason and say “Hi, my name is Charlie, want to play?” and Jason just smiles.  Then “Charlie” walks away and Jason doesn’t understand.  Both children lost out on playing together because of a lack of communication.

Jason is 5 now and is much better, but there are still times when he cannot express that he wants to play with other children.  I have the same exact issues with Ben who is almost 4 years old.

The last 5 years have been such a struggle for me to make sure my children grow up happy, healthy and socially excepted.  But as a mother, the stress and worry doesn’t compare to the happiness that I feel when my children succeed with their communication skills.

I still have a lot of work to do and it helps to read other moms blogs, that is why I share my stories.

Please leave a comment with any thoughts or stories of your own.  Also, don’t forget to trust your gut and have your child evaluated if you feel that he or she is having trouble with their speech.

 

Maryann Matas

 

I read this article this morning.  I posted on fb and LinkedIn just discussing with others.  I still feel that I need to say how much my heart goes out to this mother, her son, her other children and her family.

http://now.msn.com/i-am-adam-lanzas-mother-says-mom-of-mentally-ill-son#scptmfs

It makes me sad because I’ve had my own struggles with getting treatment for my children (medical needs and special needs).  I’ve had to fight for my sons and their rights.  I’ve demanded second opinions, I’ve spent countless hours researching what’s best for them, and I’ve stayed awake many nights worried about them and their future.

My boys’ behavior is nothing like what this mother described of her son, but my boys are still young.  I hope to God that I never have to go through what she is enduring but what about all of the parents that ARE going through these devastating situations?  Why is there not adequate help and support for them?

It seems that mental illness is swept under the rug.

I’m no expert in this field and I don’t pretend to be but I am an expert in who my boys are.  I will continue to do the very best for them to ensure that they have the happiest and healthiest education, life and future.

I wish the best to this mother and her family and to all parents who have children with mental illnesses and special needs.

 

SandyHook            Autism and Violence-A Sad Connection

I’m so shocked and saddened by the events of yesterday, the Sandy Hook Elementary School shooting.  My very first emotion and act was that I cried.  My heart broke for the parents and loved ones of all of those children, plus the adults that died.

The community of Newtown, Connecticut will be shaken and be affected by this tragedy for a long time to come, perhaps always.

Having two little ones in an elementary school myself I was grateful that they were alive and safe but the thought of this happening in their school is terrifying.  Ever since the Columbine, Aurora and Virginia Tech tragedies parents wonder if their school is next.  I don’t think anyone dreamed about this nightmare happening at an elementary school.

The other point of this post was to say that I was also saddened by the fact that Autism was mentioned as a cause of the shooter’s rampage.  My boys don’t have autism but I do know children who do.  I fully supoort children with Autism and their families.  I just hope that this tragedy doesn’t turn into a finger-pointing crusade against other children with Autism.

Below is an article that I came across about this topic as it pertains to the Sandy Hook tragedy.

http://www.autism-society.org/news/autism-society-no-linkage.html

God bless the souls of the lost children and adults, and bless the hearts of their grieving families.

Maryann Matas

Who I Am

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Who I Am

 

I’m a mom, above all.  I have two precious boys who light up my heart and drive me bonkers every day!  Jason is 5 and Ben is 4.

They both have asthma, ezcema and developmental delays.  They each have their own set of struggles and other medical issues.  For example Ben has multiple brain lesions, an abnormal growth syndrome and mild apnea.   Jason has a sensory disorder, strabismus of his right eye and is an extremely picker eater.  They both have upcoming specialist appointments which I will talk more about later.

I’m writing children’s books, which I haven’t published yet, and I’m opening a shop on Etsy called Maryann’s Creations.  I’ve enjoyed writing and playing with arts and crafts my whole life.  My earliest memory of crafting was when I was in the 1st grade.  I made a giant pencil about 2 feet long.  I was amazed at what I had just created!  I also remember painting in kindergarten as my favorite activity.

At a young age my mother always praised my writing and art skills.  I just never pursued it professionally until now.  When I was young I didn’t feel good enough and in my twenties I was too busy in school and figuring out my life.  I had my kids at 30 and 32 and for the last five years I’ve been swamped, as all parents, with normal parental duties and exhaustion!  Even after all of the many medical emergencies, doctor’s appointments, tests, therapies, procedures, significant lack of sleep and very high stress levels I would say to myself “One day Maryann, you’ll write one day, you’ll craft one day”.  Or, “When the kids are bigger and healthier”.

Well they are  bigger and in some aspects healthier, but my decision to start writing and crafting, came from my heart and also my fear of never pursuing my dreams.  I am a mom, but I’m also Maryann.

I’m going to share with you my stories, struggles, fears, joy, and insights of having children with special needs.  I’ll be posting pictures old and new and adding links to resources that I have found extremely helpful, such as links to Advocacy and IEP sites, learning activities, and free ebooks on a variety of special needs topics, etc.

This is my first time doing this so, please, be patient and laugh with me as I go through this.

I want to hear your thoughts and please share your stories as well.

Maryann Matas

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