How to make this mama cry

Monday we had an appointment in NYC for the twins.  Chris' geneticist believes that the boys have something genetic as all 3 have PDD_NOS, apraxia, etc.  While we were there Chris left his beloved "Kitty".  He got "Kitty" last summer at the boardwalk when George's dad took the kids.  Chris started crying so George went around the block and parked in the loading area of the hospital to run in and get "Kitty".  The parking attendant asked me to drive around the block and move the car.  Yup, I cried!  I can drive in Philadelphia, Baltimore, DC but NOT NYC!  No way!  Not at all!  She took pitty on me and let me just move up a bit in the parking area.

I had to take this picture!

This was the restaurant we ate at.  It was YUMMY!

Don't forget to enter my give away.  There are no entries as of now and tomorrow is the last date to enter!

Sharing pictures

PYHO: Built in Best Friends

I often wondered how it would feel to have someone with you at all times.

Someone who has spend almost ever moment of their lives together.  Someone who knows everything about you. Someone who has laughed with you, cried with you, got in trouble with you, and loved you from the moment they knew you existed.

I often wish I knew what was going on in the minds of Jon and Matthew and if they truly understand the amazing gift they were given to be twins.  We have tried to share with them that they are unique for who they are but also what they are. They are twins. Not everyone can say they had a best friend from the moment they were conceived.

For a split second I had worried that Jon's autism diagnosis would make it more difficult to share the special bond with Matthew.  Then I see the boys like this 

and I think all will be ok.  

I am confident that someday we will see 2 little old men just like the men on the Muppets sitting like this

Autism be damned! The boys are sharing the twin bond through and through and I adore watching them growing up.

Brought to you by Pour Your Heart Out

PYHO: Forget about Holland

I’ve heard about “Welcome to Holland” where the experience of having a special needs child is related to going on a vacation and landing in Holland instead of Italy.  I disagree.

When we had our children I didn’t go into it saying “I’m having special needs children” yet I relish in what I do.  I am in love with every minute of being with my boys.

Who couldn’t resist the smiles, hugs, kisses, and “lub you’s”?

My children are children first and foremost.  Their genetic make-up doesn’t define who they are!  Yes, we live in the land of autism, apraxia, extra chromosomes, learning disabilities, and others but that isn’t the only thing about my boys.

Matthew has a funny sense of humor.

Matthew is a sensitive soul.

Matthew has the biggest brownest eyes that I adore!

Matthew has an amazing smile.

Jonathan blows me away with his artistic ability.

Jonathan is such a love bug!

Jonathan has a memory that would impress anyone.

Jonathan is such a hard worker.

Chris has a never give up attitude!

Christopher is so creative.

Chris has done things the doctors said he would never do.  Take that 555kb 16p11.2 duplication!

Chris is such a wonderful brother!

Yes, we might not have planned on having special needs children but who does?  I’m right where I want to be and wouldn’t change a minute of it!  My wish is that everyone else sees my boys for who they are not what labels they may carry.

How the school is screwing us over part...lost track of how many

The school told me they saw exactly what was written about Jon and his PDD_NOS diagnosis.  They agreed that he has poor social skills, fleeting eye contact, etc.  The school sent the doctor paperwork showing the complete opposite!  The school said he has good eye contact, good social skills, is very appropriate and has no signs of an autism diagnosis.

The doctor did some evaluations, some observations and said that looking through the paperwork he showed signs at home but not at school of being on the spectrum.  She decided to do the ADOS to be sure.  The ADOS showed my monkey as being on the spectrum.  DUH!  We've only been saying it for HOW LONG? She agreed that he also has a severe communication impairment. and believes he has dysgraphia   .  She feels he could have dyslexia  as well but is too young for a firm diagnosis.  We'll have to go back and be rechecked in a year or so for it because right now it is still developmentally appropriate.

The doctor feels that we should put his autism diagnosis in the parental concerns section of his IEP and feels that it is a matter of time before they come out; she said by 2nd grade the school will probably be calling her up again for help asking her what to do.  For now, we need to advocate for more speech services to work on his apraxia and pragmatics/grammar.

Independent Evaluation Bound

Tomorrow we have our independent evaluation for Jon.  It all started in September when I called and asked for Jon's diagnosis to be fixed on his IEP.  They wouldn't change it.  They told me the person who did the evaluation was a psychologist and not a medical doctor.

The CST team told me that a psychologist doesn't have the training to diagnose a medical issue and they didn't have to acknowledge it.  I researched who can make a diagnosis of autism and showed proof.  I showed the team that the DSM guidelines and the letter from the psychologist stating Jon has PDD_NOS.  It took many calls to the state and to the Director of Special Services in our district and they agreed he probably has autism but they couldn't recognize it.  They said they don't need to put it on his paperwork as it is not interfering with his educational day.  I argued it was in fact interfering with his educational day and I believe his co-morbids are ADHD and dyslexia and he has a phonological deficit.

I tested Jon as I would any other kid that I worked with.  I showed them the proof and they were not pleased that I tested him.  They told me I was expecting too much of Jon.  They forgot that I am a Reading Specialist.

It took me reading the NJ State Educational code, citing specific areas in it about independent evaluations, and diagnosing autism for the district to agree to the independent evaluation.

Tomorrow is it and my stomach is in knots now!  I am afraid after seeing the speech evaluation report that the district will not put the PDD_NOS diagnosis on paperwork.

Happy Birthday Jonathan

Happy birthday Jon,
 
 This year we have found out that you have PDD_NOS.  It doesn't change anything about you.  It means we understand you more and can give you the space you need sometimes and can help you where you need help in other areas.

 You love playing with knights and dragons, army men, playdough, Transformers, Toy Story,  and Legos.  You are amazing with your hands and can create a Lego Starship without directions!

 You FINALLY hit the 40 pound mark.  You have no clue how excited we all were!  You really hit a growth spurt from last year to this; last year you were 36 pounds and around 41 inches tall.  This year you are 40.1 pounds *you were proud of the .1 pound* and 45 1/2 inches tall!  I guess all those times of you saying "hungry" were truthful and you REALLY were hungry!

This year we celebrated your birthday by going to Chuck E Cheese, Toys R Us, and Petco.  You picked out a fish that you named Pikachu.

I love you to the moon and back *and to infinity and beyond!*
Mommy

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.

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".  

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.