I've Had People Say.....

I have not updated in a while but I was thinking about the times I've told someone my son has Asperger's and how they have reacted. 

I've had people say, "I am so sorry!"

Sorry?  If you've said this before don't feel bad.  It comes from a good place in your heart.... I hope.  Saying you are sorry is like saying "poor you to be stuck with that kid" or "poor kid he will never be all right."  But I am not sorry.  He is the same boy whether or not there is a diagnosis attached to him.  Don't be sorry.  Be understanding.

I've had people say, "Really?  Are you sure?"

Ummm....yea... I am sure.  This reaction usually comes from people who have not spent much time with Nathan.  They have seen him on his good days and on his best behavior.  This comment does not offend me,  It reminds me that four years of Social Groups, Physical Therapy, and Occupational Therapy are working.  But some do get offended by this statement.  I've heard parents say it sounds like you are doubting what they know and they wish you could see the hard days, the tantrums, the stubbornness, the gagging at smells, the loud sounds, the shutting down moments.......  Yes....we are sure.

I've had people say, "My kid does those things too.  It's normal for boys."

This statement probably also comes from a good place in your heart and hopefully an honest place.  Hopefully you are trying to connect and be sympathetic and kind.  It does not offend me.  In fact it's nice to hear that my kid is "normal."  But I can tell you others find it offensive.  Why?   You are implying that maybe it's a misdiagnosis, over diagnosis, or just not that bad. So just be careful with that one.  Maybe say, "My child does some things similar to that at times."  Or just nod because maybe the mom needs to vent to you for a bit and just wants a listening ear.

I've had people say, "What is Asperger's?"

This is not at all offensive and should not be to anyone.  My opinion is just because you have had to become an expert on a topic such as autism and Asperger's does not mean the rest of the world has had to.  So educate yourself and be prepared to educate others in a kind way. 

I've had people give me the look. 

You know what I mean. That look that says, "Why is your son acting that way?"  "Isn't he too old to be doing that?"  "Why can't you control your kid?"  "He needs better discipline."  Yea....that look.   When Nathan was four he talked like an adult.  He spouted off the Presidents names, first, middle, and last like a party trick and people loved it.  He talked about soil erosion and history.  So people thought he should act like an adult too.  So when he acted like a four year sometimes acts then people give you the look.  Because of his obsessive personality he would do things that would make people look.  I don't mind people looking but not if they are giving "the look."  You know what I mean.

I've had people be downright rude.

"How old is your son?" 
"He is eight."
"Really?" said in the most nastiest way you can imagine. 
This happened when Nathan was at the park having a fit on his bike.  He was crying because he couldn't keep up with the  other kids.  And this woman was wanting me to tell him to "stop" or "be a man" or "don't be a cry baby" or something.  According to her my son was not acting his age.  According to her my son wasn't doing or behaving the way she thought he should.  Now, there are plenty of times when I have dealt with this and will explain to the person, "He  has Aspergers.  It's hard for him." But if you are being mean and nasty and thinking your two girls with their perfectly done hair eating cherries like candy are the epitome of your perfect parenting style and my son crying on his bike is not... then you get no explanation.  I'd rather go comfort and encourage my son than waste my time trying to change your mind.  Sorry.  Rude?  Maybe?  Or just the truth.....

I've had people step away.

I was talking with a woman in Target close to Christmas.  She was looking  at Imaginext toys.  Nathan's favorite.  He was not with me.  Shopping alone!  A mini vacation!  :)  She looked confused as she browsed the toys.  I asked if I could help.  She told me what her son wanted, a castle with a orange door.  I said, "It's this castle.  I know them all.  My son loves these."
"How old is your son?" she asked me cheerfully as she grabbed the castle from the shelf.
"He is eight." 
"What else does he play with?" she asked. 
"Not too much else.  He loves Imaginext toys."
She smiled.  "Really?  But like what other toys?  I need ideas for my son."
I shrugged.  I was enjoying my conversation with her.  She was so friendly and so I thought I'll just open up a bit.  "He pretty much plays with Imaginext and maybe a few action figures.  He has Aspergers so his interest are limited."
Her face changed then and I am not lying when I say  she took a step back as if she might catch a disease.  "Oh," she said and then grabbed her cart and hurried away!  I was shocked!  Her whole face went from friendly to scared in a matter of  minutes like just being near me might infect her. 
Ignorance!

And I've  had people be kind to me and Nathan and their children be kind. 

So what is the right reaction?

If you don't know then ask questions.  How did you know? How was he diagnosed?  How does he do in school? 
If you don't know what to say then maybe keep quiet or ask the mom or dad how they are doing.  Some days are rough! 
If you want to comfort then comfort but most of us don't need comfort.  We want you to just understand and help your children, grandchildren, nieces and nephews understand and to be taught kindness. 
Ask how you can help? 
Sometimes we have a lot of appointments and places and therapies and it can help to watch other kids or to even offer to go with the mom or dad to some of the appointments.
Be a friend.  Sometimes we have to be hard on our kids or always on them to try and prevent  meltdowns.
Warn us.  People with Aspergers like a plan and they liked to know what will happen.  So let us in on details for a play date before it occurs so we can prep.   
Treat our children like normal children.  Just have a little extra patience and kindness.
Be a friend.  Encourage your children to be a friend.   

  

School School School

After a busy and fun filled summer the kids had their first week of school last week and have entered into the second week today.

So far so good!

Emma likes her 1st grade teacher and is doing really well.  I think she tends to respond better to other people teaching her than her own mother!  She is reading and doing more math than I thought she could do.  She always tells me she doesn't know how to read but this momma caught her reading!  Stinker.  She is still always on the go and never stops.  As soon as her head hits the pillow it's light out.  If you don't hurry to say good night then she will be asleep before you get there to tuck her in.

Katelyn is 19 months and a busy bee.  She is not thrilled that her brother and sister are now in school.  She is absolutely in love with Mickey and Minnie Mouse and now has taken a liking to Dora.  We call her the hoarder because she likes to walk around the house with her arms absolutely full of toys!  I stopped nursing her at 18 months.  I am not weird.  I am not insane.  :)  But it was time for us to end it.  She is a easy going baby (Toddler: ahhh) and a true joy to be around. 

Nathan has done great at school!  He loves his teacher and he really thrives on the set schedule.  He acts like a movie star waving and talking to all the teachers and staff and knows their names and room numbers.  He is excited that this year might be harder for him.  His teacher is talking about getting him into the gifted program this year.  He will continue to do PT 2 times in a 6 day cycle and he will also see the school psychiatrist 2 times in a 6 day cycle which is actually more than last year.

The mornings and nights are cooling off and it seems like fall is already in the air!  I love this cooler weather.  Time sure passes fast with kids.  They are growing up very fast. 

Time for homework! 

504

Today Chris and I met  with a room full of people.  We met with the school psychologist, the occupational therapist, the physical therapist, and the principle.  And I say room full because it was a small room and with all these people plus us and the kids... the room was full! 

Anyways, we were there just about an hour.  The conclusion is this:

Nathan will no longer receive OT, Occupational Therapy, as he has mastered the skills he set out to achieve in OT.  He can color using more than one color and he no longer just scribbles.  He can use scissors without risking a finger.  His grasp has vastly improved.

Nathan will continue to receive PT to work on balance, endurance, and overall strength.  He will also try and learn to kick a rolling ball as his timing is still too off to appropriately do this. 

Nathan was receiving social skills classes one a month and this will get more intense and he will now receive these skill classes with the psychologist once every cycle which is once every six days.  It has been noted that he is still struggling to interact, react, and behave appropriately with his peers. 

Nathan will go to third grade for reading at what they call a higher tier.  He was at a low tier in third grade and will just go to a higher tier which is harder instead of going to fourth grade. 

They will continue to challenge him with extra work in first grade rather than move him forward a grade to 2nd.  This is being done because he is struggling so much socially. 

Overall we are satisfied with what has been laid out in the 504. 

I know this post has little flair it is more of a quick update for those interested!

Life Moves Foward

It's been a while since I updated but with the arrival of baby Katelyn I have been pretty busy!

Nathan is going to be done with school on June 7th and I can't wait!  I'm ready to have him home again and do some fun things.  I think he did well in school and though he had some struggles I think overall his first year at school went great.

Emma will be starting school in September and boy I will miss her!  She is feisty and funny and loves to help with Katelyn.

The kids have not been jealous of Katelyn.  They lover her.  She is a really great baby and a true joy to have! 

I sometimes look at her and just start crying.  I call her heartbreakingly beautiful.  Strange I know.....  But I look at her and think of our third baby I will not hold here on a earth and also remember without the loss of our third baby I would not have Katelyn.  She is so beautiful and perfect and I can't imagine NOT having her.  I talked to someone recently who told me they had 3 miscarriages.  I can't imagine.  One was beyond hard.... but three? 

Friday we meet with the school psychologist, occupational therapist, physical therapist, and I believe Nathan's teacher for next year.  I am not 100% clear on what we will discuss but I guess we will find out!  Pray for wisdom that we will know what to ask, what to say, and that Nathan will get what he needs. 

So life moves forward.  I am loving this season of my life.  It's busy and exhausting and hectic and sometimes we get dressed out of a laundry basket because I haven't had time to put it away but I am loving it!! 

Physical Therapy

Just a quick update.  Nathan's school finally hired a physical therapist which means as soon as this busy momma gets a chance I can go to Nathan's doctor to pick up his prescription for therapy and then he can start therapy at school.  He already does Occupational Therapy OT, and has made remarkable improvements but his balance and coordination still need work as well as some muscle weakness still present. 

This morning Nathan was in a terrible mood and crying and whining over everything and yelling at his sister and me!  He is supposed to have a play date today after school and I told him if he couldn't control himself I was cancelling.  Just before he got out of the van to go into school he blew me a kiss!  Very unusual for him.  I was just saying the other day how it's a shame he never seems excited to see me after school and doesn't seem to miss me so a blown kiss was special!

Nathan does not like the weekends because he said he would rather just stay at school.  We are happy he loves school so much but we also want him to understand that time with family is important. 

So that's about it for now! 

"He Has Aspergers like you!" "Oh"

Where to start?

Nathan is officially in love with school.  He even boast about having no absences and makes sure to list who in his class has been absent before and how many times.  He knows EVERYONES name in his class and even kids from other classes.  When Chris called the school office about something he said he was calling regarding Nathan and the woman on the phone goes, "Nathan Tidball?  Oh, we know who he is!"  LOL  I bet they do!

Nathan actually does better during the week than on the weekends.  I think during the week he knows exactly what will happen and the schedule at school and he thrives on that!  Whereas our weekends are always different and we go places, run errands, get up later, etc. 

Nathan did report that he doesn't get along well with one girl and I won't go into details but the teacher has been made aware of what was happening and said she will take care of it.  We really like Nathan's teacher. 

We also have been informed that Nathan gets pulled out of class and gets to read to someone.  They said they are doing their best to challenge him.  I do admit we wish he could get into 1st grade for a more challenging education but at the same time I think he does well to be with kids his own age. 

Nathan knows the whole school schedule and what "special" they have every day. 

His first picture day is tomorrow and he said he HAD to have a red background for his picture.  His first field trip is Friday and I get to go with him!  Probably the first and only field trip I can attend since the baby will be here in February. 

We are having Nathan's birthday party early this year, in October.  A little girl from his class lives nearby and she comes and plays in the back yard with Nathan. Anyways, her mom called and said they would like to come to Nathan's party but she hesitated then said, "She has a brother who is nine and he has Aspergers and thinks he should get to go too."

I said, "No problem!  He is welcome!  Nathan has Aspergers too!"

She almost seemed excited and said she would like to talk and know what their options are.  Again, I feel so grateful we caught Nathan's early and he could spend a year at the Early Intervention and attend his social group and OT and PT.

I told Nathan about his friend's brother having Aspergers like him and he just said, "Oh."

Emma is enrolled in ballet.   She loves it!  And she is so cute in her tutu.

I am in my 6th month of pregnancy already.  Time seems to be passing fast.
 

Orthotics

Nathan had physical therapy today and a new therapist was working with him.  At the end of his session he was tired and angry.  He usually is.  But his therapist asked me if anyone had ever told us Nathan needed orthotics in his shoes due to his arch collapsing and throwing him off balance.

OOPS!

Yes, we were told this already but due to certain circumstances we never followed through.

Long story short:  Tomorrow night Chris and I have to take Nathan to Trappe again and have him fitted for orthotics and HOPEFULLY our insurance will pay for these. 

After his fitting we have to get a script from his doctor and after that we have to see if insurance will pay for these.  Not sure how long this process will take but I am sure it will take some time!

Nathan worked so hard at therapy and was so worn out I got him a Philly pretzel on the way home.  He loves those. 

Meeting with the School Board Today

Thank goodness for blogs and facebook and e-mail to give a mass update or else I'd be on the phone all day repeating myself! 

This morning, at eight, we met with the school.  The man in charge of Special Ed was there along with the Occupational Therapist (OT), Physical Therapist (PT), and Julie, the school pshychologist. 

The meeting took an hour and a half!  The kids did really well and played with some toys they had for them.  Many of our "fears" were allayed by this meeting. 

I won't go into long details but I'll give you the basic idea of what we came away with. 

Nathan will get some Occupational Therapy that will be Incorporated into his school day.  He will get Physical Therapy because there is concern with his safety on the playground due to a lack of safety and body awareness. 

Again it was expressed that although the psychologist says she has no doubt he has Aspergers she can not give him that educational diagnosis since it does not affect his ability to learn new information and because he is functioning above average academically.  He will have 504 plan in place.  It's a legal document that will follow him through out his schooling since his IEP from Early Intervention will "run out" when he starts school. 

They will the make the teacher aware of some special needs to have plenty of visual cues, being very specific with directions seeing as he is very literal and also the use of fidgets may be used.  Fidgets would be some sort of object such as a stress ball that he can literally fidget with during class to help him stay still.  We think this will be a very good idea. 

They will NOT be letting Nathan skip a grade and after our meeting today we pretty much agree.  In first grade they say he will be expected to do certain things like using scissors and and followng directions with much less help than he would receive in Kindergarten. 

They are worried that he may have a hard time adjusting in the beginning.  It could become a sensory overload suddenly going to school all day with kids he does not know and have to follow directions and not be in control. 

Overall, it will be a big adjustment for him.  And for poor mommy...who I am sure will worry the day away while her "baby" is in school.  :)

One more thing: Tomorrow Nathan has his social group but at two p.m. we are also meeting with Creative Services to start a long process in finally obtaining an official diagnosis!  And sadly I am sure they will kill at least another twenty trees with the paperwork involved! 

Thanks for everyone's care and concern and prayers regarding our family and all the decisions we have to make. 

We love our little boy and Emma too of course!