Josh's World: The Joys and Tribulations of Raising a Child with 1p36 Deletion Syndrome

Beautiful Josh

2010-08-28T01:38:00.003-04:00

I know I always start these posts by saying I know it's been a while. So let me start by saying I know it has been a while. We have been here in NC for just under a year. Josh is getting so big. I am still searching for the best place to live and the best services. I am really missing south Florida and all of our friends. Many of you know our struggles. Since moving here Josh has been kicked out of therapy and hurt in therapy. We have been through 5 pt's in the past 8 months and 2 ot's. Josh's speech therapist is very sweet. He loves her alot. School isn't my dream for him. I don't want to say to much. because they do have a link for this blog. However it is not the right place for him. I guess after he attended Abi's Place I expect more for him. I know what he can do in the in the right environment. I just can't afford the right environment. If any of you know any legitimate work from home jobs let me know. Josh and I are taking it one day at a time. His scoliosis is still severe and his kyphosis has disfigures his back. The doctor's still don't want to operate. I am confused by this and a little relieved. The thought of that major surgery scares me. On the flip side Josh had been home with me since March and cognitively I have seen some really wonderful changes in him. Just when I thought it wasn't possible for one person to have anymore personality he surprised me again. He has started to consistently finger feed himself. I get excited at every meal.Below I have mad a video of Josh. I hope you all enjoy. Have a great day!

Josh in therapy

2010-01-06T11:12:00.003-05:00

Please don't feel sorry for Joshua in the last three videos. It was all behavior attitude. I posted these videos for his new therapists. Josh pretends he can't do anything with his new therapists, so he isn't expected to do much. If he would only put half the effort into working instead of getting out of work he would be doing so much more. He is to smart for his own good. lol I will update everyone soon on our new adventures in NC.

Hi Everyone

2009-12-04T23:43:00.003-05:00

Where to start. We have had some very big changes again. We now live in North Carolina. Josh and I are not quite used to the cool weather. After two years in South Florida we are definitely Floridians. My poor little boy shivers in 60 degree weather. lol I will be updating pictures soon.

I am now an Avon representative. I am hoping that I am successful so I can be here for Josh when he needs me. Please visit my site. http://mfinn.avonrepresentative.com/ If you place an order by December 10th you will receive the products before Christmas. Also, if you purchase before the 10th type in FIRSTREP and receive free shipping. I am so excited and I would love for all of you to share in this experience.

Find The Kiddie Pool... Help Change Josh's Life -adaptivemall.com

2009-07-15T22:33:00.002-04:00

Find The Kiddie Pool... Help Change Josh's Life -adaptivemall.com

Shared via AddThis

We are at it again. Our insurance has denied Josh new equipment. Any help we get is greatly appreciated. I want to thank everybody for your continued support and patience. Thank you.
Just click on the link above.

Josh's Birthday and other adventures

2009-06-29T19:01:00.020-04:00

I have been really bad at updating this. I guess I will start with Josh's pictures. He has been extremely demanding lately so I don't get much time to myself. lol
We had a small celebration this year. I had planned to take him to Disney for his birthday, but our trip to PA and MD ran me a little short for our Disney trip. Needless to say I threw a very small get together.

The Cake

Only my son would cry over cake.

My mom and Josh outside of Borders

One of Josh's favorite things.

Josh on the boardwalk in Ocean City, MD

Just because he is so cute!!!

MEDICAL FUN

8 hour eeg. What a champ!

I am so proud of him. Although towards the end he only had one eye.

Prepping for casting.

Back side of cast

Front of brace

So bored

Fun with paint

Purple kisses

We have had a a busy month. We went to Philiadelphia. We went to Shriner's Hospital to get some more options for scoliosis treatment. The options we were given were pretty discouraging. I think we need to get another opinion. There has been a lot of changes recently. Josh was not given another scholarship to school. The tuition is $15,000 a year and we can't afford that. He had lost his insurance and when I finally got it back they are not approving as much therapy. There are other things, but with all of this happening I think it is time to move again. Tony and I knew that we were not going to make South Florida home. I always said about two years. I believed that when it is time to move we would know. Josh and I are taking a trip to NC in about two weeks. I want to check out the area and make sure everything is there that he will need. In short that is what we have been up to.

Moving Forward

2009-04-25T10:28:00.012-04:00

PT with Terry Toothy Grin. Josh is now missing both front teeth. Mommy and Josh Daddy and Bug Pappy and Josh Grammy and Meghan Josh and Meghan Meghan and Grammy Tony and LindaLexie and Grandpa Snuggle time for Josh and GrandmaJosh with his grandparents Grandma and Josh It has been quite a while since I have posted on here. We had family visiting in the months of March and April. My parents came in March. Tony's parents and daughter came down in April. I have stopped working and started focusing more on what Josh needs. It had become very difficult to arrange all of his appointments and stay on top of the insurance company. Many of you know that Josh lost his insurance on January 1st. It has been a long battle, but he has it back and will be starting his therapy back up very soon. He had his pt and slp evaluations this week, but ot can't fit him in for a couple of weeks. WHAT'S NEW WITH JOSH: Josh went to the orthopaedic doctor on April 7th. We received some discouraging news about his scoliosis. His curvature is measuring at a 50 degree curve and his kyphosis is also measuring 50 degrees. This is a substantial difference since his last visit. We are now on the fast track to surgery. I have applied for care at Shriner's in Philidelphia. Annette's daughter Lexie is going up there in May for surgery. I am hoping that Josh can have the same type of surgery as Lexie, but I fear because of the kyphosis this won't be possible, and we will be looking at something more invasive. I am a little freaked out. Josh has made so much progress I would hate for him to lose it and have to start all over. Well, and lets face it surgery scares the crap out of me. So please keep him in your prayers. The good news is Josh is making HUGE strides cognitively. He is following simple instructions. He is communicating his needs more. He is imitating. He is sorting. He has just had an explosion with his cognitve and sppech milestones. I am so proud of him. I will end it there. Have a great week everyone. Here are some videos of Josh. He is very close to self feeding. He is trying very hard. His reward is TV. This is also new. He only started watching TV within the past couple of weeks.

Introducing the newest member of our family Jorden Carter.

2009-02-24T15:10:00.012-05:00

Jorden is my sister Katie's first baby. He was born yesterday. Weighing in at 6lbs 7 oz. My reports have been that mom and baby are doing fine.

These two cutie pies are my sister Ashley's children. Olivia Lynn and Ryan"aka Bubba" Christopher. Bubba's 1st birthday in Thursday so he and Jorden should be great pals growing up. Well, Livy is the princess of the family. She was born on Halloween. What a fun day to celebrate.

Now of coarse I must post some pics of my #1 superstar Joshua Cole.
My son would not take his eyes off of the girl in the brown bikini. He always goes for those skinny blondes. LOL

The past couple of months have been crazy. We are still fighting for insurance. I did get Josh coverage, but it doesn't cover therapy. I have been paying out of pocket for some, but he is only gettin 2 a week. He had been getting 13 therapies a week. I have notice some regression, but he will get it all back. Other than that I don't think much else is happening. Have a great day.

Update

2009-02-07T22:23:00.003-05:00

This is an older pic of Josh. He was 4 in this one.

I am trying to stay awake, so I may ramble. Joshie is sick. He has 102 fever and the shivers. I wasn't home today. I had my first big fundraiser for the school. Tony didn't realize Josh was sick and he only had 8oz of fluid all day. I have been trying to get some fluid in him, but Josh won't stay awake long enough to get anything in him. Needless to say I am freaking out. I always worry about seizures, even though April will be 3 years seizure free. I am so tired. I was preparing for the fundraiser last night and didn't get to be until 11pm and was up at 3:30am. I worked for 12 hours.(on my feet the entire time). Don't get me wrong I feel blessed. Josh is typically a very healthy boy. He tends to get the flu once a year. It just always make me frantic. I always want to rush him to the hospital to make sure he is hydrated. Josh isn't a big drinker. It is a battle everyday to get fluids in him. He doesn't drink out of an open mouth cup, so I can't get him to open his eyes and take a couple of sips. I have to use a syringe and pin him down. Luckily, I did get some tylenol in him.
Anyway, The good thing that happened today my fundraiser raised more then $5000 for the school. It made me feel like I made my keep this week. I have 2 more fundraisers this month. Today we had a yard sale. You wouldn't believe the amount of items we had donated. It was insane. I have been advertising for donations since October.
Aww, my poor pumpkin. He is so uncomfortable. He keeps getting mucous stuck in his throat making it hard to breath. Just for a moment then he starts snoring again. I just wish I could take all of the sickness from him. I would rather be miserable. Isn't funny what parenthood does to you.
Other happenings. We lost his insurance on January 1st. I fought and got him on another insurance by February 1st. However, it is not the right plan. It won't cover his therapies. I was paying out of pocket, but you know how that goes. It eats away at savings pretty quickly. Now, the only reason we moved to Florida is on a break. I hate, hate, hate Not having Josh in therapy. Monday will start a much better week. What I have learned this week is never leave Josh for to long, because no one knows him like me, and no one will fight for him like me. Sometimes that makes me sad. I would love to have someone to lean on. Don't get me wrong Tony loves and adores Josh, but he is not mom. Okay, enough rambling. I am going to take my buggy's temp. If the fever has broken I am going to catch some zzz's for a couple of hours.

HAPPY NEW YEAR!!!

2009-01-01T00:12:00.004-05:00

Joshua says cheers! Have a safe, happy, and healthy New Year!!!

Merry Christmas!!!

2008-12-23T14:05:00.002-05:00

Merry Christmas! I hope everyone has a wonderful holiday. There is not much to update. I have been very busy at work. Josh is doing awesome. His pt said 2009 will be the year Josh walks. They are very committed to him. His slp said she is going to work on lung control with Josh. He needs to strengthen his breaths. She believes speech is in him, but he doesn't have enough strength and motor planning to get the words out. They will be reformatting his speech program. I believe 2009 will be the year of miracles for us. I am very hopeful. Again, Merry Christmas. Don't let the true meaning of the season be lost in stress.

Happy Thanksgiving

2008-11-27T20:42:00.005-05:00

So Bored!! Thanksgiving night 11:30 pm 15 mins. before school starts 10 mins before school Feed me faster Daddy! Do I look innocent? Happy Thanksgiving! Josh has been quite a night owl, lately. I posted some pictures of his late night fun, and his mornings. There are pictures of him on hanksgiving. We didn't have any where to go so we kept it casual. The last group i of our Thanksgiving lunch, at school. The video is just to show how great he is doing.

Halloween Fun

2008-11-15T01:06:00.006-05:00

Josh kissing his #1 groupie

I don't think I want to play with eyeballs.

Spread'Em Punk! He looks a little suspicious.

Josh and Ms Carrie jamming to the piano and working on sitting.

Sorry it has been a while. We moved 2 weeks ago and I couldn't find my cable to upload. Obviously, Josh's school had a Halloween party. Josh is still doing great. He is getting stronger and stronger everyday. He is really trying to talk. He has been babbling up a storm, and he said his first sentence."I want bath" and he was at the bath tub when he said it. Cognitively we have seen huge changes. There are more and more moments when we can have a 2 way conversation with him. He will sign yes, no, more, or all finished, and that can answer most questions. He continues to entertain us with his wonderful sense of humor. I am just so proud of him. He works so hard. I am so grateful for the opportunities he receives from his school and therapy. They are amazing people that work with him, and we are so blessed to have all of them in our lives. Well, it is very late. I think I need to call it a night. Have a great week.

Josh at Pumpkin Patch Day

2008-10-25T12:14:00.007-04:00

Josh making his cookies Josh's cookies Josh and Mr.J Josh stirring his brew
I suggest turning down the volume. My voice is annoying in this video. lol

Strength for our 1p Family

2008-10-21T23:40:00.003-04:00

Josh at School

Josh after school. I get so many kisses.

Josh is doing great. He is working really hard and making great progress.

On a sad note we lost another one of our 1p36 angels yesterday. Chloe was 1 year and 14 days old. She is the third child with 1p that has passed away in the past 6 months. We lost Annette(6) and Jenny(19) please say a prayer for their families to find the strength to go on without them. These girls were so strong and they should be remembered. Thank you.

Josh

2008-10-04T22:20:00.004-04:00

Josh on the parallel bars. Josh made the tree behind him with his hand prints
Joshie riding a bike.

Josh in the news paper

2008-09-30T18:07:00.006-04:00

Can you find him. He blends into his blue bean bag. They wrote he was giving five, but that's not Josh.

This is Abi (the school's namesake) and her mom Danielle(founder of Abi's Place)

This is the pt Kat and Josh's friend Melissa

Update

2008-09-21T20:57:00.005-04:00

Josh Standing Tall!!!

Back by popular demand!!!! Josh shaking his booty.

Sorry it has been so long since I have updated everybody. We have had a lot happening.

First, Josh's school has been going great!!! We love all of the staff. We have seen so many improvements in Josh in such a short amount of time. He loves to go to school. The other morning he scooted to the front door and grunted at me. His way of saying "come on mom let's go!"

Second, I did get the job at FAO Schwartz. I did an orientation with them last Friday. Then on Saturday I received a call from Danielle the founder of Abi's Place, and she offered me a job doing fundraising for the school. Needless to say I am working for Abi's Place. I started this week. I have been a little tired this week. I haven't worked in 6 years and I have never worked with Josh. I am so excited about this opportunity. I have so much to learn, and I can't wait. The people I am working with are so knowledgeable and can teach me so much. I am definitely a little overwhelmed, but I can't wait to learn everything I can. I always said (since having Josh) when I go back to work I want it to be something important, something that has purpose, and it does.

Third, We have found a house in a much nicer area. We will be renting, but we have to go through a lot with the HOA to get approved to move in. Hopefully we will hear something soon.

Fourth, If you look to the right of the blog you will see two links. One is to Abi's Place. If you want to donate click on the link and it will direct you. Let them know Josh sent you. It is a non profit so it can be a tax write off. There is also a link to I give. I give is a website that is free to sign up for. It has over 700 stores you can shop from. Old Navy, Gap, and many others. Anyway, if you go in and sign up put in Florida and Abi's Place. When you shop at these stores they will donate a % of their proceeds to Abi's Place. Not one penny comes out of your pocket, but you will be helping the school. After you sign up anytime you go to one of the stores that participates a small box will pop up and let you know that the store participates. If anybody works for a corporation that wants to donate to the school please email me or call me. chelle7544@yahoo.com
Lots of great stuff happening. Thanks to Abi's Place we will be in South Florida for a while. Have a great week everybody

Poem

2008-09-04T22:26:00.004-04:00

I had to go the whole way to November to find a pic of Josh and Me together. Might I add, not a good one lol

I am the little engine that did.

When on my journey in life, my tracks led me to a mountain - a
diagnosis of
( 1p36 Deletion Syndrome, Autism, CP, MR, ...) - I looked at it with defeat - thinking there
was no
way I could climb over it.

I then pondered the obstacle before me, and I then said to myself
over and
over, "I think I can, I think I can...," then I slowly started
climbing the
mountain saying to myself over and over, "I know I can, I know I
can,...."
and then I made it over that ominous diagnosis and continued my
journey.

I am the little engine that did.

I am more devoted than Noah's wife.

I sometimes feel overwhelmed in my "houseboat" -- 365 days and 365
nights a
year, constantly working with and teaching my child.

But when the storms of isolation and monotony become most unbearable,
I do
not jump ship. Instead I wait for the rainbow that is promised to
come.

I am Xena. Real life warrior goddess of disability. Defeater of the
word "retard".

With my steel plated armor I can battle anyone who gets in the way of
progress for my child.

I can overcome the stares and ignorance of those without a disability
in
their lives - and educate them as to why my child is the way he is,
and why he
does the things he does.

With my sword of persistence, I can battle the schools to have them
properly
educate my child.

Yes, I am Xena -
and I am prepared for any battle that might come my way...... I am
beautiful.

I have hairy legs because I get no time alone in the bathroom, and
bags
under my eyes from staying up all night with my child.

The only exercise I get is the sprint from my house to my car - to
take my
child to therapy.

Dressed up to me is, well - just that I had a moment to get dressed!
They
say that beauty is in the eye of the beholder -and so even on the
days when I
don't feel very beautiful - I will know that I am........ because God
is my
beholder.

I am the Bionic Woman.

With my bionic vision - I can see through the disability my child
has, and
see the beauty in his soul, the intelligence in his eyes --- when
others can't.

I have bionic hearing -

I can look at my child when he smiles at me, and hear his voice
say, "I Love
You Mommy," --- even though he can't talk. Yes, I am thankful to be
Bionic.

I am Superwoman -

I am able to leap over tall loads of laundry in a single bound, and
run
faster than a speeding bullet, to rescue my child from danger. Oh
yes, without a
doubt, I am Superwoman.

I am Moses.

I was chosen to be the mother of a Special Needs Child.

I may at times question whether I am the right "man" for the job ---
but God
will give me the Faith I need to lead my child to be the best he can
be.

And like Moses, God will give me the small Miracles here and there,
needed
to accomplish my mission.

I am Stretch Armstrong -

A mom that can be stretched beyond belief and still somehow return to
normal.

I can stretch limited funds to cover every treatment and therapy that
insurance won't.

I can stretch my patience as I bounce from doctor to doctor in a
quest to
treat my child.

I can stretch what time I have, and share it with my husband, my
children,
my church, and still have some leftover to help my friends.

Yes, my name is Stretch.

And I have the stretch-marks to prove it!

I am Rosa Parks.

I refuse to move or waiver in what I believe is right for my child --
simply
because my view is the minority, not the majority.

I refuse to believe "What can one mother do?" But instead, I will
write,
call, and rally to the government if I have to, and do whatever it
takes to
prevent discrimination against my child and ensure that he gets the
services he
needs.

I am Hercules. The Greek god known for strength and courage.

The heavy loads I must carry would make others crumble to the ground.

The weight of Sorrow, Fear at uncertainty of the future, Injustice at
having
no answers, and the Tears of despair, would alone possibly be too
much, ---
even for Hercules.

But then the Joy, Laughter, Smiles, and Pride, - at my child's
accomplishments, - balance the load to make it easy to bear.

I am touched by an Angel.

An Angel who lives in a world of his own. And it's true. He lives in
a
world of innocence and purity.

A world without hatred or deceit.

A world where everyone is beautiful and where no-one is ugly.

A world where there is always enough time.

A world where he goes to bed with no worries of tomorrow and wakes
up with
no regrets of the past.

Yes, I most certainly am touched by an Angel, and in some ways, his
world is
better.... I am a true "Survivor" - the mom of a child, who has
faced, is
facing, and will face, --some of the most difficult challenges life
has to
offer.

Oh yes, I am a TRUE "Survivor" -
and don't need to win a million dollars to prove it!!! I am a mom of
a
special needs child, all the above, and so much more.

Someday's I will want to be none of the above - and just be a typical
mom
with a typical child, doing typical things.

On those days I will know it's okay to be angry, and to cry, and to
lean on
my family, friends for support. Because after all, ---the most
important
thing I am ..... is human.

I am not sure who wrote this, but it is perfectly put.

Some More Pictures

2008-09-01T20:26:00.007-04:00

Princess Josh. Doesn't he look pretty?

Princess Matt. This is Lexie's little brother Matthew. What are we going to do with these boys?

Lexie is obseesed with the letter X

Our little intellects. If you look closely you will see Josh's book is up side down. lol

Lexie loves the way Josh's hair feels. This is awesome. Lexie used to not like to be around her peers let alone touch them.

I want to thank the grandpa that made a donation to Josh's school. I can't tell you how much we appreciate it. The school is great. In Josh's first week there he has already surprised us so much with his accomplishments. Thank you, again. Have a great week everyone!

Josh's First Day of School

2008-08-25T21:12:00.005-04:00

Josh in front of school. It was so humid it fogged my camera up.

Josh at circle time.

Josh in the cage at pt. He looks like he just got off of a horse. lol.

Josh had his first day of school today. He loved it. When I came to pick him up he said he did not want to leave. I am so happy he got into the Zimmerman School House. I really believe that this experience along with PTA (therapy center) is going to offer him a life changing experience. They already had him doing things at school today that he refuses to do for Tony and me. I want to thank everybody again for all of your prayers. I can't even begin to express how much it means to me.

We have put in notice at our apartment and will be looking for a house down here. To rent of course. We are not crazy enough to buy in this FL market. We will be staying here for a while now. We were hoping to move next June, but with all of this great stuff happening for Josh we just can't move yet.

I have a job interview with FAO Schwartz on Wednesday. If you have any more prayers to spare us please pray that if this is the right job for me I get it, if not to send the right one along. I have to go back to work South Florida is killing us financially. Our rent is double what our mortgage in PA was. That is insane to me.

We have just been busy trying to get everything together. I am just so excited for what possibilities lie in front of us. Have a good day. Thanks for all of your support.

2008-08-14T20:33:00.002-04:00

Just a quick update. Josh had his open house at school, today. Since it was the schools grand opening they had the ribbon cutting ceremony, lots of people, and pictures. I am sure the school will upload more photos. We have been very busy getting ready for his new school. We are very excited. The more I get to know the owner, teachers, and therapists the more I realize what a wonderful thing this is. These people seem to really have good hearts.

He Got In!

2008-08-05T21:03:00.003-04:00

Great news!!! Josh was accepted to the school with a full scholarship!!! Thank you to everyone who prayed for him. It truly is a miracle. There are only 6 children in the school. They only give 1 scholarship out a year, and they already gave it to another little girl. The owner said she would find the money for Josh and gave him another scholarship. God was with us. Josh loved the school and the staff that he met today. We are very blessed. The school runs solely on donations. It is a non profit. We won't be fundraising for the intensive, because now he will be getting it everyday. They also will be working on aba (the behavior program that I have been praying for). This has been such a blessing. Thank you, thank you so much for all of your prayers and continued support. I am attaching a link to the school. If you would like to make a donation that would be great. Please tell them you learned about the school from Josh.
http://zimmermanschoolhouse.com/agents/73317/index.asp

Prayer Request

2008-08-04T12:03:00.004-04:00

Josh signing more more. He was eating potato soup.

I recently contacted a special needs school in our area. Their focus is on intensive therapy. Josh and I are going tomorrow. There are only two slots left for this year, and Josh may qualify for a full scholarship. I am asking all of you to please pray. I want this for him so bad. Intensive therapy for 9 months would change his world. I know this without a doubt. Financially, Tony and I are struggling. As many of you know South Florida is not a cheap place to live. Please, I am asking you all to say a prayer for this. This could be the biggest thing to ever happen to him. I am already fantasizing about how different his life could be. Also, if you have prayer circles please send this request on. I know it may sound trvial, but I know this could change Josh's life. Thank You all so much!!!

Bath Time and updates

2008-08-01T20:49:00.007-04:00

Linda, I put this on for you, but your son wouldn't let me take his picture. Me, without makeup I must be nuts!!
There is no Mommy time at my house. LOL
Joshua always gets his way(:

Now for the updates. Josh must have sensed my stress, because he was an angel for 2 days. He decided break time was over, and today went back to his old ways. The good news with that is that it shows me he can control it, and that gives me hope.

Now, to the push chair saga. The company that delivered the chair will not return it. I made some calls, and found out that the company they ordered the chair from will. The problem is they will only return it with original box. Needless to say, we did not get the box and the ordering company threw it away, so we are stuck with a $6000.00 chair we can not use. Some lucky family will be really happy to have it donated to them. The insurance company does not want to buy another one(which I don't blame them) so we will have to purchase one out of our own pockets.

Now to the fundraiser, I will be posting the link soon. Josh has been approved for the intensive program. The woman that runs the non profit for the therapy center is in New York on business. She said she will call me with the amount we need to raise, and update his link as soon as she gets back. I am so excited! I know that last intensive did amazing things for him.

Second part to this may make you uncomfortable to watch

2008-07-30T00:24:00.002-04:00

I don't know why, but Josh throws a fit almost every time we walk in the apartment. This apartment depresses me too, but I don't go crazy over it. These behaviors last for hours everyday. If there is a behaviorist that looks at this HELP!!!!! We have tried to hold him, massage him, brush him(sensory thing for those who don't know), time out, leave him alone, the reward system. Nothing has worked. I have contacted several behaviorist in the area. If they can see him it usually runs about $450.00 a week(and we can't do that), or their programs are full, or they only help children with autism. If any of you 1p parents have any suggestions I am all ears. I figure Tony and I have another 30 or 40 years left in us. If this doesn't get better I think all three of us are going to be broken and insane by the end of this ride. I am so desperate for help, but can't find anyone willing to lend their expertise. Whenever you mention 1p that's usually when the door shuts. Nobody knows what that is, and instead of learning they shut the door. Sorry for complaining. I am just tired and overwhelmed. This little boy is so smart, funny, sweet, and loving. I know it's in there. I see it often. I just wish he could show it all of the time. I just need to learn the tools to help him. I have read books, but I have know idea how to implement what I am reading. Let alone, know if I can do it on my own. I just want a happy boy. I tried to upload another clip, but it wouldn't take, so if this is confusing in anyway ot's because there was another video.

This May Be Uncomfortable To Watch

2008-07-29T21:02:00.006-04:00

This is after therapy. He threw a tantrum through at least half of therapy and this was 15 min. for me. This is because he didn't want to go grocery shopping.
This obviously is because we are in the store.
Josh knew we were home and he had his music. He was happy the whole way home. He was being shy. He doesn't like when I video him, but he's got the the rhythm in him, and can't hold back his need to boogie.

Yes,Another One

2008-07-23T21:09:00.006-04:00

Josh at the waterpark this weekend.
Well, we are at it again. We had Josh evaluated for another intensive program. Hopefully, I will find out more information tomorrow. There is a website for all of the info. We are asking for donations, again. I will post a link soon. The website has Josh and his story on it. We are just waiting for the donation button to be added. This fundraiser is through a non profit organization, so it is tax deductible. The center is in our area, about 10 miles from us, so we won't need housing this time. I am still very happy with PTA, (the center we moved for). Josh's insurance is only covering 5.5 hours of therapy a week, and as many of you know the intensive program help him tremendously. 5.5 hours a week is just not enough. Josh has made gains since we have been here, but nothing like he made during the last intensive. I will keep you updated as I receive the info. So many of you have helped financially in the past, and we are VERY APPRECIATIVE. I feel bad that I will be asking again, but for Josh I will humble myself in evry way possible. He is my world, and I just want him to reach the potential that we know he is capable of.

Standing

2008-07-14T18:58:00.003-04:00

Josh has been doing a great job with his standing. He can hold my hand and stand, and he holds on to objects. A couple of times he has stood with no support at all. We are very proud of him. Not much going on. I am still fighting the insurance company to take the push chair back. Josh has his good days and bad days at therapy. Slow but sure we're getting there.

Josh in the swing

2008-07-07T17:29:00.004-04:00

Josh loves the swing. I think he looks so cute in the puppy towel. My mom bought it for him. We just found out he will be getting an extra hour a week of pt. I am very excited about that. His behavior has been less to be desired. I guess my next battle will be to fight for a behaviorist. If we can get his behavior in check our worlds would change. He throws tantrums constantly. It seems like most of his behaviors derive around food. He has gained so much weight in the past two years it probably wouldn't hurt to have a nutritionist either. Time for a new game plan.

Josh in speech

2008-07-01T17:24:00.000-04:00

It's been a slow week. Here is some video of Joshie in speech. He actually said bubble just before I turned the video on. It's hard to catch those moments on video. He had a couple bad weeks at therapy again, but has been doing great this week. He was doing very well with choosing before I walked in. I guess he decided to be silly when he saw me.

Big Boy

2008-06-25T15:55:00.000-04:00

Here is a video of Josh walking. He can walk a little better when he wants to. He's getting there.

What am I supposed to do with this?

2008-06-23T12:56:00.000-04:00

I am not sure what to do with this push chair. We were told it would be light weight. It is 47 pounds. It was supposed to fold flat. It doesn't. It is huge. If you can see the dots thats how tall the seat is. Now look at Josh. He is tiny. Then there's the fact that it stands 5 feet and I am 5'3. I am going to try to return it. I am just so bummed out. It was supposed to be easy to steer, and lighter. It was supposed to make my life easier. Sorry I needed to vent. I am just so disappointed in this chair. I can't even begin to tell you how hard we had to fight for it. Well we're off to therapy. I just noticed you will have to click on the pic of Josh by himself, but I asked if he liked his new chair. His expression cracks me up.

Have you ever needed a reason to clean?

2008-06-21T19:20:00.000-04:00

Josh got to finger paint the bathtub, yesterday. Lots of fun!! I needed to clean, so this motivated me to get it done.

We're getting there!

2008-06-17T17:03:00.000-04:00

Josh is getting so strong. Now we can see his bubble butt(:

This is how Josh gets around. Yes, Josh messes his room up everyday. Unfortunately, he hasn't learned to clean it!

He is working really hard!!

Welcome to Holland

2008-06-16T17:34:00.000-04:00

My Wildman

This is one of my favorite stories.

Welcome to Holland

by
Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a
disability to try to help people who have not shared that unique experience
to understand it, to imagine how it would feel.

******************

It's like this... When you're going to have a baby, it's like planning a
fabulous vacation trip - to Italy. You buy a bunch of guidebooks and
make your wonderful plans. The Coliseum, the Michalangelo David, the
gondolas in Venice. You may learn some handy phrases in Italian. It's
all very exciting. After months of eager anticipation, the day finally arrives.
You pack your bags and off you go. Several hours later, the plane lands.
The stewardess comes and says, "Welcome to Holland." "Holland?" you say.
"What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy.
All my life I've dreamed of going to Italy." But there's been a change
in the flight plan. They've landed in Holland and there you must
stay. The important thing is that they haven't taken you to a horrible,
disgusting, filthy place full of pestilence, famine and disease. It's just
a different place. So you go out and buy new guidebooks. And you must
learn a whole new language. And you will meet a whole new group
of people you would never have met. It's just a different place. It's slower
paced than Italy, less flashy than Italy. But after you've been
there for a while and you catch your breath, you look around, and you
begin to notice that Holland has windmills, Holland has tulips,
Holland even has Rembrandts. But everyone you know is busy
coming and going from Italy, and they're all bragging about what
a wonderful time they had there. And for the rest of
your life, you will say, "Yes, that's where I was supposed to go. That's
what I had planned." The pain of that will never go away, because
the loss of that dream is a very significant loss. But if you spend
your life mourning the fact that you didn't get to Italy, you will never
be free to enjoy the very special, very lovely things about Holland.

************

c1987 by Emily Perl Kingsley. All rights reserved

Introduction

2008-06-16T16:23:00.000-04:00

I guess I should introduce us. My name is Michelle. Tony and I are the lucky parents of Joshua. Josh is 6 years old. When Josh was born he had alot of small abnormalities. He had inverted thumbs,a herniated belly button, undescended testicles, he did not cry, and he did not breathe for the first min. in a half of his life. While we were still at our local hospital I noticed that Josh would shake and then pass out. Both his doctor and my doctor said it was nothing to be concerned with and sent us home. When he was three weeks old he started to convulse, and again I was told not to worry. The next day I had my neighbor video tape the convulsions and I took it to our doctor. We ended up at the Univ. of MD hospital. Josh was having seizures. There were so many tests run. His MRI came back showing brain abnormalities and then the genetics test came back showing Monosomy 1p36 deletion syndrome.
Tony and I were told that there were only 10 to 20 cases worldwide that had been diagnosed with this. The geneticist then continued to tell us that our newborn baby would be severely mentally retarded, and there was no chance that would change.

Needless, to say in the following years with that geneticist Josh amazed him. He was not the child we were told we would have. Josh is so smart. Not everyone sees it, because he has very little forms of communication. He can identify words on paper that many 6 year olds would not be able to read. We are very proud of him.

We have recently moved to Florida to get him more help. We lived in MD and PA and there was very little therapy for him. When we lived in MD the only therapy center that would see him discharged him, because they didn't believe they could help him. We then moved to PA and there really was no therapy to be had. That is another story.

Through our journey we became very isolated. Friends and family stopped calling. No one seemed to want to visit. My depression became overwhelming. I didn't understand why nobody wanted to embrace this beautiful child. It is something that I still struggle with. In many ways Josh is like a normal kid. We have had some embrace him. My uncles kids have always been so wonderful with him, and for that I have always been grateful. We have had some family try. We know they love him, but just don't know what to do with him. I have a wonderful online support group (I have listed on this blog), and I found a friend early on who also has a daughter with 1p. I think in many ways she and I have become each others sanity.

If you are a friend or family member of child with 1p and your looking for answers, what I can tell you is call your friends. Let them talk and let them cry. Get excited about the little things. You can't fix this. These kids are gifts and as they get older you get to see the most important things that life can offer. It is an extremely rewarding and extremely difficult path to walk. As a parent of such a special child I know that I have truly been giving a miracle, and wish that I had true friends to share that with. We have has special angels that have come into our lives through this journey. Please don't think I am saying we have never had anyone. I wouldn't want to offend those who did offer support.

In short Josh has made many gains in his life, and still has many more to acheive. He is doing them. Slow and steady, but he is doing them.

Josh in the cage

2008-06-12T23:04:00.000-04:00

Josh is still going strong in therapy. His therapists are amazed with his progress. Tony and I are so proud of him. He is just the most amazing child. His behavior at home for the past three days has been beautiful. He has been saying some words(not consistent), but he is saying them. This isn't the best video, but it seems whenever I turn on a camera he stops whatever he was doing. LOL. He is something.

Josh's Progress

2008-06-10T12:56:00.000-04:00

Josh is doing great in therapy. His therapists and I believe he is making a break through. Josh has always had severe behaviors in therapy. He would scream like a caged animal for hours. Lately, he has been really happy and has been working hard. His standing looks so nice, and his walking is becoming stronger and steadier. I am very proud of him.

I am now teaching myself different methods of behavior therapy and education. I am working on ABA (Applied Behavioral Analysis) and Brain Gym. The more we can get Josh's behaviors in check the better all of our lives will be.

Josh got his report card the other day, and he accomplished all of his IEP (individual education plan) goals. Tony and I are so proud of him. When we lived in PA he never accomplished these goals. They were set up for him when he was 3. His last report card in PA showed that he was falling behind where he had been in pre school. Since we have moved he has a accomplished the old goals and some new ones.

His communication is improving. Last night he told his Daddy he needed to go potty. Today he told me he wanted to eat lunch. I was singing to him today, and at a certain part of the song you say boom boom, and Josh actually said boom boom as clear as a bell. We are seeing more and more glimpses of communication. It is very exciting.

Under Construction

2008-06-09T23:33:00.000-04:00

I am new at this, so you will have to bare with me while I find my way. I am sure this blog will change it's look several times before I get it right.

Josh's World: The Joys and Tribulations of Raising a Child with 1p36 Deletion Syndrome

Beautiful Josh

more video

More videos for Joshie's new therapists

Josh in therapy

Hi Everyone

Find The Kiddie Pool... Help Change Josh's Life -adaptivemall.com

Josh's Birthday and other adventures

Moving Forward

Introducing the newest member of our family Jorden Carter.

Update

HAPPY NEW YEAR!!!

Merry Christmas!!!

Happy Thanksgiving

Halloween Fun

Josh at Pumpkin Patch Day

Strength for our 1p Family

Josh

Josh in the news paper

Update

Poem

Some More Pictures

Josh's First Day of School

He Got In!

Prayer Request

Bath Time and updates

Second part to this may make you uncomfortable to watch

This May Be Uncomfortable To Watch

Yes,Another One

Standing

Josh in the swing

Josh in speech

Big Boy

What am I supposed to do with this?

Have you ever needed a reason to clean?

We're getting there!

Welcome to Holland

Introduction

Josh in the cage

Josh's Progress

Under Construction