Week 4 of Friday Fun Week

This week we had ESY for Chris Monday through today from 8:30 to 12:30.  Jon and Matthew had speech on Monday from 11:45 to 12:15.  Matthew had OT yesterday from 8:45 to 9:15.

We had a nudist

We had a bunch of fun in the sun

We got a bit cold on a sunny day

Got so muddy from jumping in the puddles that we had to take a mid-day bath

And dumped all the toys all over the floor while in a naughty fit of rage and started playing the crocodile.

We baked yummy treats...so yummy Chris took them to school Thursday and Friday since they were finished Wednesday night :)

We also enjoyed fruits  veggies of our labor

Overall, it's been an amazing week and this weekend should prove to be as well.  We have the night tonight without kids and will be working on things for a yard sale on Sunday.  We are going to see Harry Potter tomorrow to celebrate my birthday a week early.

PYHO: Turning my frown upside down

I have 3 special needs kids.  No one wakes up one day and says "HEY, I want to have a bunch of special needs kids!"  They are mine and I wouldn't change a chromosome about them!  

Having said that, it can be an overwhelming feeling to have A special needs child.  There is a whole, a need, in my area for special needs parenting advocacy groups.  I am not sure if I've said it on here before but I tutor on the weekends.  I tutor 2 amazing children who just so happen to have an extra something in their DNA as well.  

One of the moms of a child I tutor told me in May about a meeting the district was having about a special needs PTA of sorts.  She and I showed up.  Out of 1,100 special needs kids, only 2 showed up.  Between the 2 of us we had 4 kids represented.

We are now going to head up and start a special needs PTA in our district.  As of today.

I am taking my "negative" and turning it into a positive.  If I can help just ONE parent I will do what I can.  I have a lifetime of parenting my children.  Why not be involved with their education a bit more?

To medicate or not to medicate

We're 2 weeks out from Jon's PDD_NOS diagnosis.  When I talked to the developmental pediatrician who works with him she disagreed with the diagnosis.  She felt that his social delays were a result of his language delays.  When Dr. Hanson gave the diagnosis she said that yes, his language is not delayed- his expressive language is what is delayed.  The articulation is what is delayed.  The amount of words, sentence structure isn't delayed.

The developmental pediatrician around here told us we could medicate him if we felt his behaviors needed them. He bounces- we call him Tigger.  He is annoyingly bouncing all.the.time.  He has this stimming thing.  I've talked about it before.

I don't want to medicated him if it isn't necessary.  I also know that medication can be very helpful for some kids.  When I taught I saw many kids improve behavior, etc.  I don't want to automatically medicate him because we have a diagnosis.  In my opinion, Jon's diagnosis of PDD_NOS is no different than Jon having blonde hair and blue eyes.  If medication helps him become less bouncy and all over the place I would do it.  I  am not sure what to do.

I don't want to rush for medication but I don't know what more to do.  I've tried some minor behavior changes and tried to put a pillow down when he plays video games. Nothing is working.

Friday/Monday Fun Day: Summer Fun week 3

I didn't get this out on Friday.  Mama was too tired!

This week has been hot, hot, hot!  Today the car registered 108!  If it weren't for Sarah Palin I'd be hopping on a plane to Alaska!

To keep the boys cool inside we played video games

We also watched an "Oldie but goodie" movie as the kids would have said in "Mario" .  I popped some popcorn in our airpopper.

We worked in our garden as much as we could.

And picked some green beans and peas.

We stayed in the A/C all week and laid low as much as we could.  It was too hot to do much of anything else! 

Justice for Ayn

Imagine you are the parent of more than one child with special needs.  I know...for some of you it is a stretch.  You get a knock one day on your door from Child Protective Services telling you that you must turn your child over to them or they will remove her from your home.  You did nothing wrong.  They determined your child is well taken care of.  There is no abuse and no neglect.

Hard to imagine?  For most it is.  Unfortunately for Derek Hoare it is not difficult to imagine.  He is living this nightmare right now.  His 9 year old daughter, who is autistic, was removed from his home on June 16th.  Within hours of being removed from a loving, caring home she was put into care that WAS abusive and neglectful.

She was put on very high doses of psychiatric medicines; she has never been on any medicines before.  One of these medicines is at over twice the maximum dose for someone her age!

Her father was not only not given access to her but was not told where she was!  She is a 9 year old child who for days cried for the hug, touch of her daddy yet rather than provide her the comfort of her father, they drugged her up more.

This hits home for me for more than one reason.  I have 3 children with special needs.  I have also had a run-in with the New Jersey CPS.  I was told I was a bad parent and should have not had Christopher by 2 women who didn't know me from Adam.  I was told I shouldn't have taken college courses.  I had 2 women want to remove my children from my home because Chris climbed up on my bathroom sink and found a bottle with medicine in it.  He opened it up.  He took his sleep medicine last May.  I took my eye off of him for all of 5 minutes while I got clothes ready for the next day.  I had never left him before but was told to start giving him more independence.  Am I a bad mom?  HELL NO!  Did I know he'd be able to open up a child safety locked pill bottle?  NO WAY!

What can YOU do for Ayn?  You can:
>> First I would urge you to familiarise yourself with the story.  Join thefacebook group or check out the news coverage of this case.

>> Then, please, go sign the petition.

>> If you can spare any money, consider donating to help pay for legal fees and experts. This fundraising site, created by Kat over at Kat's Cafe also features a widget you can add to your blog to encourage others to donate.

>> If you blog yourself, please, blog about Ayn.  You can also tweet your blog post under the #BlogforAyn hashtag and we'll make sure it gets seen by everyone! If you don't blog, but are on Twitter, feel free to RT the #BlogforAyn tweets to help spread the news.

>> Finally, if you've signed the petition and are wondering what kind of difference your one click will make, consider extending your influence by writing to those who have the power to reverse this decision:

Prime Minister Stephen Harper 
Office of the Prime Minister
80 Wellington Street
Ottawa, ON K1A 0A2
Canada
Fax: (613) 941-6900
E-mail: pm@pm.gc.ca


Premier Christy Clark
Premier of British Columbia
Parliament Buildings
Victoria, BC, V8V 1X4
Canada
Fax: (250) 387-0087
E-mail: Christy@christyclark.ca


and


Mary McNeil
Minister of Children and Family Development
Room 306 Parliament Buildings
Victoria, BC V8V 1X4
Canada
Fax: (250) 387-9722
E-mail: mary.mcneil.mla@leg.bc.ca

You can link your posting up to mine so we can all support Ayn and Derek.

Kids say the darndest things- 2nd edition

The boys have been coming out with tons of things lately.  I swear I could do a comedy act with my kids.  It would be part Roseanne/part Everybody Loves Raymond.

This week Chris started Extended School Year and he is not pleased about it.  He tried telling me on Monday night that he was sick.  He tried convincing me he had a fever.  It wasn't just any fever though...it was  Beiber Fever!  "Take my temp mama!  I has a Beiber Fever!" and then yelled at me when I laughed at him.

Jon today told me he was not hungry for supper and wanted to go upstairs and have some alone time.  I asked him to eat something small that was healthy and then he could go upstairs.  When it was time for his bedtime snack he forgot to do something.  What was that something?  Wash the chocolate off of his face!  Yup, he went upstairs to sneak into my oreo stash.  When I asked him about it he told me "It wasn't me!"  Dare I say I caught you brown faced?

PYHO: The incredible 40 year old bungee-like umbilical cord

I don't want to use Wednesdays as a bitch session.  Having said that I really think my mother in law forgot to cut the cord from my husband.  I really swear she did.  The cord doesn't stretch more than 20 minutes.  I wear that's why we live here!

My husband hasn't been a religious man.  She turned him off to organized religion.  I can't take all of the kids on my own.  Chris has a tendency to run up and down the isles.  We have, however, taught the children about who God and Jesus are.  We have given them a good moral system.  What we don't do is spend that one hour a week in church.

This past weekend my brother-in-law became a "born again" Christian.  I am very proud of him and his new found faith.  George actually asked me to start going to this church.  I am happy but it needed to come from him.  She called me up and asked me if we were going to church on Sunday.  I asked her why before I answered.  She is worried for my children.  I made her cry the other week she says.  

She said that the other week when she had our children over night Matthew did something he shouldn't have and instead of simply saying "No" she said "How would Jesus feel?"  In typical Matthew style he asked who Jesus was.  Not because he doesn't know but because he has a language delay and has processing issues.  She is worried that our children will not enter heaven.  Are you serious woman!?

She went on to tell me she is worried about Matthew and his encopresis.  She thinks Matthew is going to die from being constipated.  She thinks the doctor doesn't know what she is saying.  Apparently my mother in law got her medical degree recently as well.  She had to tell me *again* how the doctor told her to manually stimulate George to go to the bathroom.  Seriously woman!?  You strapped a glove on your hand and put a finger up his butt to make him go potty!  There's something wrong with you lady!  I'm not doing that.  I'll stick to what the doctor told us and that isn't to molest my kid to force a poop.

She is on a health kick and has now started asking me what George's eating habits are.  He's 40!  Cut the freaking cord!  According to her (and Dr. Oz) I have to limit sugars to less than 3 grams per day.  I need to remove 100% of fake sugars.  She is upset that she thinks I am not doing my job to aid in his nutrition.  I'll repeat it again...HE'S 40! It's not my job to make sure he is eating correctly.  I may buy food for our house but it is up to him to eat it.  Just as I have said before, I teach my children healthy eating habits but it is their job when they are adults to follow through and continue with the healthy habits.

 She means well...I know she does but lady cut the cord already!

Wookies, R2D2, and Robots Oh My

Yesterday was the first day of Extended School Year for the boys.  It started last week but we were in Boston or the genetic study.  I stopped to talk to one of the supervisors about what was said while we were at the study.       Jon has been doing this thing lately where he makes a sound like this

He does this all.day!  All effing day!

Meanwhile, this is Matthew at the same time Jon is doing his Wookie act.

Chris started in on the act with "I.AM.A.ROBOT!"

It makes for an interesting time.  This is my house all day.  Someone needs a new stimming pattern, mama needs a break!

Let it Be

It's no secret that I am a HUGE Beatles fan.  One of my all time favorite songs is "Let It Be" along with "Blackbird", and "Here Comes the Sun".  

Last week as we were on our way to the airport after spending several days in Boston for the genetic study we did and I head the song "Let it Be". It was really hard to contain the tears but as silly as it sounds it was comforting.  We are very grateful for the opportunity to participate in the Simons VIP genetic study.  It did come with some answers that I don't think I was prepared for.  

I knew Chris had a severe expressive language issue.  I didn't realize how severe.  The doctor who was in charge of the study site felt that if we didn't do something to help him, as in an augmentative communication device as soon as possible his communication skills would never improve.  This will have a negative impact on his ability to learn and can impact his cognitive skills.  I talked to a Supervisor today in our district about having an evaluation for augmentative communication come September.  We were also told to get a formal behavioral plan set up .  My arm, leg, and the rest of my body are aching for that!  The child can go from sweet as pie to headbutting me in the leg in a blink!

It seems as if Matthew's supports for now are correct.  They felt as if Matthew has an expressive language delay, a motor skills issue, and a quarky personality.

Jon, they felt had PDD_NOS.  I know this is going to sound silly but this hit me like a ton of bricks!  I felt that he "was my only hope" pardon the Star Wars reference at having a "typical" kid.  We have just about all of his supports in place already.  I talked today to the speech person in the ESY program and to the Supervisor.  We will up his speech by one session and add some social skills goals in September.

As we drove away from our time in Boston I thought about how wonderful of an experience we had- how blessed we were to have this experience.  While we drove away all I could think is "Let It Be".  

Friday/Saturday Fun Day Boston Style

This week they boys went on their first plane ride.

Not everyone was impressed....

Once getting settled into the hotel where we were staying they became 3 little monkeys jumping on the bed.

We enjoyed the sites around Boston.

We met an amazing group of women and learned so much!  Not only did we learn more about the 16p but we learned about the boys.  Although some of it was hard news to hear, it was WELL WORTH IT!

We went to Salem and the boys got to take a ride while we were there.

They visited a few pirates and turned into witches

Overall, they had a great week.  Next week we start Extended School Year.  Chris will be going from 8:30-12:30, Jon will get speech on Mondays, and Matthew will be getting speech on Mondays and OT on Thursdays.

Next week I will be continuing with my phone calls.  I need to let the school district know what was said this week.  I need to find a communication therapist for Chris.  I also need to write to our local senator and get help with the insurance.  Finally, I need to park my rear in our local welfare office and try to get Medicaid cards for Chris and Jon to help pay for therapies and adaptive equipment for them.

Blindsided

We got the results, somewhat of the genetic study today. They said they feel Chris is more "autistic-like" which is what the developmental pediatrician said when he was first diagnosed with PDD_NOS. He gave the dx only because there was a bunch of little things that were in all the categories but the therapies he wanted Chris to have were the same so it was easier to get the therapy than to explain "autistic like" to someone. He does, however, have one of the worst expressive delays they have every seen. We need to look at a communication board for him. If we don't get him help they think he'll not be able to communicate with others.  This I'm ok with. 

They felt Matthew has something and they still can't figure it out. They called him the quarky kid with the expressive language delay. They said that he doesn't meet enough of the criteria to give him a dx of autism. 

Jon is why I was blindsided. I feel like the worst mother right now to ignore the signs and not see things. He has autism. He meets the criteria for a PDD_NOS diagnosis. He doesn't make good eye contact; we thought it was ADHD. He likes to play by himself. I told people it was him wanting privacy in a house filled with kids. He doesn't like to socialize. Again, I thought it was him being a quiet kid. He has narrow focus in activities. I could go on and on but I can't without crying more. The diagnosis is coming from one of the best doctors in the US; one who is trained in ADOS and ADI and trains others to use the tools. 

My heart hurts. I am confused. This isn't fucking fair! I look at my sweet boy and my heart crumbles for him. What does this mean for him and his future?  


I need a good loud cry but here I am all by myself with my babies in a hotel in Salem.  I am trying to stay strong for them.  

Genetic Study Day 2

This morning started off wonderfully!  We ate the leftover cheesecake from last night.  The boys begged for chocolate raspberry last night and ate all of our lemon raspberry instead.  They have good taste; the bite we did have was yummy!

We arrived at the Children's Hospital of Boston this morning around 9 and walked up to the area where they do bloodwork.  Chris was pissed!  He wanted nothing to do with it but they put numbing cream on his arms and he was a bit less pissy about things.

I filled out tons of paperwork and surveys with those who were doing the study.  Afterwards, we went to a different location and we had a lunch.  George had his MRI as soon as we were done with lunch and the boys and I went to the practice MRI machine.  Jon willingly got in the machine and Chris wouldn't get up.  When it was time for their MRI's, Jon happily got in.  He is being used as the "typical" kid family member.  Chris wouldn't do the MRI.  We weren't stressing.

We got back to the hotel and ended up eating at the 5 Napkin Burger again.  We walked around after and enjoyed a bit of sites around the city.

Tomorrow we will talk about our results.  I suspect that we will be told something about Matthew and Jon as far as development.  That and George having OCD.....

Genetic Study day one

We got into Boston last night, checked into our hotel and took a walk to get supper. The boys have never been on a plane and through the 45 minute flight, they looked out the window and were excitedly talking about the clouds.

When we got to the airport there was a Cadillac waiting to take us to our hotel. The boys were excited about that (except Chris who wanted his car back). We checked in and got settled then took a walk to get supper.

We ate at 5 Napkin Burger last night. Man, they have some pretty big burgers! Chris and Matthew ate up all the onion rings we ordered and most of their supper. Tonight they chose The Cheesecake Factory. Matthew is in love with this place!

When we got back to our hotel room there was a package for us for the genetic study team. It was a Red Sox bag filled with Boston chocolates, gummy lobsters, crayons, coloring books, waters, and a map of the city.

Today they did educational testing on all of us as well as ADOS testing on the 3 boys and George. I had an interview, ADI if I remember. It talked about Chris' language abilities. George and Chris had neurological exams this afternoon. Chris (and the other boys) were tired and cranky.

Tomorrow we will have blood draws to work up a complete DNA test for the future. They are working on more comprehensive DNA testing to delve into the chromosomes more than they can now. George and Chris will have MRI's as well.

We are going on a duck tour tomorrow around the city. They boys are excited about that!

Overall this has been a wonderful experience and I am very happy to have been able to participate in it.

There will be pictures when we get home and I can download my camera.

7 years ago (give or take a day)

Sunday will be our 7th anniversary.  7 years ago I was a nervous 20something bride *a lady never reveals her age* waiting for my 30something soon to be husband.  I was antsy, weepy, and worried about how George would think I looked.  I was anxious to make sure our plans were running smoothly.  We chose to get married in a very small church that was important to my family.  It no longer had services there but was a part of my family history.  It was in a tiny area where my grandfather grew up and is now being taken care of by my mom and uncle.  7 years ago, it was taken care of by my grandparents.

Like many brides, I was worried about the day and not looking past the day much more than the following week.  I was not in reality.  I was looking at what our wedding day and honeymoon and not much beyond it.  I remember I was given some advice by a friend telling em to remember your wedding day is just that, a day.  We do need to prepare for the day but we should be preparing for the rest of our life together.  

I remember when we were picking out the readings for the wedding picking one that is used often, 1 Corinthians 13

¹ If I speak in the tongues^[a] of men or of angels, but do not have love, I am only a resounding gong or a clanging cymbal. ² If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have a faith that can move mountains, but do not have love, I am nothing. ³ If I give all I possess to the poor and give over my body to hardship that I may boast,^[b] but do not have love, I gain nothing.


 ⁴ Love is patient, love is kind. It does not envy, it does not boast, it is not proud. ⁵ It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. ⁶ Love does not delight in evil but rejoices with the truth. ⁷ It always protects, always trusts, always hopes, always perseveres.


 ⁸ Love never fails. But where there are prophecies, they will cease; where there are tongues, they will be stilled; where there is knowledge, it will pass away. ⁹ For we know in part and we prophesy in part, ¹⁰ but when completeness comes, what is in part disappears.¹¹ When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became a man, I put the ways of childhood behind me. ¹² For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.


 ¹³ And now these three remain: faith, hope and love. But the greatest of these is love.


I think today this holds more true than it did 7 years ago.  This past year has been the most difficult of them in my opinion.  We learned about Chris' 16p duplication last year but this year we learned that George has the same duplication.  George has been having difficulty coming to grips with this.  I wish he'd understand that he didn't do anything "wrong".  I wouldn't change anything about him or Chris.  I adore everything about both of them.  

7 years ago I married my Prince Charming and I'd do it over and over again.  He is my partner in life, my best friend, my companion, and my love.  Ask me if I'd marry him again and the answer will be the same, today, tomorrow, and forever more.

Friday Fun Day: Summer Fun Week 2

This week has been kinda light with activities.  We went to my mom and dad's house for the 4th of July weekend where they were like fish in water.

We also enjoyed fireworks Sunday night.

Mommy spent most of the week cleaning, doing laundry, and packing for our trip.  We are headed to Boston on Sunday for our genetic study.  The Simons VIP Connect group is studying the connection between 16p11.2 syndrome and autism.

What did you do this week?

PYHO Wednesday: Those without sin cast the first stone

We spent the weekend at my mother's house.  It is a 4 hour drive. I only go there 4 times a year. You'd think I want to spend time with my family?  I used to enjoy spending time with my family.  Then I had special needs kids.

My mother has a theory about my children.  She thinks they need spanked more.  She thinks that spanking will cause Matthew to stop having accidents.  She thinks spanking will cause him to stop throwing a fit when she squirts his face with water while in a pool.  She thinks that threats will cause him to stop crying about the water going in his eyes, mouth, and nose.  She forgot to apologize.  She thinks that if I spank Christopher it will force him to walk instead of us pick him up while he is tired.

My mother told me that I don't do enough with my children and pass the responsibility on to the teachers to teach my children.  My children and I spend all day playing and I swear I have the ability to turn anything into a therapy.  On the same token, I force my kids to do too many therapies and I should let them be kids.  I don't correct Jonathan's speech enough and I should be embarrassed to take him anywhere.  Jon has apraxia.  If I corrected him for everything he said incorrectly, I'd do nothing but correct him.

My mother sat and told me my children were not well behaved yet while we were there in church we had several people who we didn't know walk over to us and tell us how wonderful our children were.  Sad that strangers see the beauty in my children but my mother can't.  Yet, while my niece started screaming in church, started kicking my sister, my mom, and my father, my mom started laughing and got upset when my brother-in-law tried to discipline her.  My boys in church made not one peep.  My boys were wonderfully behaved all weekend.  

My mother is upset that the entire home town where I grew up *a bunch of gossiping gossipers* have talked about how I have 3 special needs children and how that must be so hard.  She thinks I have Munchausen by proxy syndrome.  I guess the other 42 families in the world with children who have the same genetic syndrome all have the same thing.  She thinks that I am faking symptoms in Christopher to get sympathy.  Being my children's mother isn't hard.  Not at all.  In fact it is quite fun.  Some days are more difficult than others but they were given to me for a reason.  

I am just glad they weren't given to a narrow-minded person like my mother.

Friday Fun Day: Summer Fun

I love the movie Grease.  I'm sure everyone has heard the song "Summer Nights"

I try to get the boys out during the day to play.  We may live in a townhouse complex but there's tons to do around us.  We garden which I've talked about, we take walks, play hide and seek, play with water in a slip n slide and a sprinkler, do tree rubbings and so much more!

I'll be sharing our week of play every Friday (I hope to at least) and hope that others can start doing the same.

This week we played hide and seek

We drew on our patio with our chalk.  We worked on letters, numbers, and drawing people.

We went on Firefly Hunts.

Played with our sprinklers

And we played with our slip n slide.  I may have told the boys we were playing and instead pulled an impromptu therapy session since Aetna and OrthoNet decided to NOT follow the NJ law about autism.  That is for another post.

What did you do this week?