Specific Needs v. Special Needs

WOW! Has it been 2 years since my last post. Guess I haven't had much to say but something has been weighing on my mind lately. A good friend is going through some trials with her kids, new health diagnoses etc. During one of her posts she commented that another friend coined the phrase a child with "specific needs" v. "special needs". This has really stuck with me. I have always hated describing Joshua as having special needs. I always felt like I was devaluing him and his strengths and letting people make judgements and opinions on his capabilities. Yes, my child is special to me but so is my daughter. All kids have specific needs. Emily needs more attention than others. She sometimes struggles with her spelling and learning how to play well with others and navigating the crazy drama world of girls playing together. If I had a nickel for every time Emily came home to declare so and so is no longer her friend followed by the next day where they are best friends again I would be rich. We all have struggles with our children some with more severe specific needs than others but it doesn't minimize what my family deals with. Hard is hard! My hard may be a different kind of hard than yours but it's still hard in my life. So back to the boy with his specific needs. He needs help remembering to go to the bathroom and he still sleeps in a pull up at night because we just haven't figured out a way to conquer this specific need. He struggles with writing not because he can't write, he's very capable, he just refuses to write because he does not see the need. He is quiet and doesn't talk much with others except his very close friends and lately he's even been answering questions in class. He loves Math. He has a high IQ but we acknowledge that this is just a minor part of who he is and there is so much more to the overall child that he is. He takes medicine for ADHD followed by bedtime medicine to help him relax so he can go to sleep. He has love and empathy for cats (not so much for his sister). He gets frustrated and meltdowns over things that appear small to others but is BIG in his world. He has accommodations accommodations at school to assist with his specific needs but he is smart enough and functions enough that he spends the majority of his day in a mainstream classroom. Noise sometimes bothers him so he wears headphones, no different than the kids who wear glasses or hearing aids or some other needed device. So that is the gist of it. I have children who have specific needs and many of my friends do as well. The key is to focus on what those needs are, help them navigate and learn to manage them and build up those strengths to give him value so he knows he really is no different from the kid in his class who has their own needs. Autism does not define my child. My child is defined by his personality, his humor, his strengths, his character, and many other things.

So it's been awhile...

Okay, Okay it's been awhile since I posted on my blog. I'm still here...really. I always have the best intentions of blogging more and then feel like I have nothing witty to add.

A lot has happened since...well last June (really June...that long since the last blog...sigh) But not too much exciting stuff important enough to share. I'll just hit some highlights.

First, one major thing is we took a family vacation on a cruise. It was supposed to be relaxing. Unfortunately, by the end I was ready to be home. Joshua did not do as well as I had hoped. He was overwhelmed most of the time and didn't help that the weather sucked and swimming wasn't always an option because of that and what else is there to do on a cruise ship with kids if you aren't swimming. Most nights he refused to be dropped off at the kids club whereas Emily was there until 10pm. She still asks me to this day when she will see her BFF Priscilla that she met on the cruise ship. The stark differences between the two of them is hard to watch sometimes. It is too sets of extremes. I have Joshua who is happy by himself playing and Emily who makes BFF every where she goes. So anyways we survived that trip.


Joshua had to switch tracks mid-year because of his pyscho teacher who verbally abused him. I was so livid when I found out and hurt and sad. You send your kids off to school hoping that they will be okay. I let the leash out quite a bit and trust those in his care. I learned I should have been more involved. His new teacher is great and caring and understanding. However, I'm so done with this school and fortunately God has blessed us and we get to change schools next year and Joshua will go to a new school with his best friend. None of this would have happened had it not been for the incident with the idiot teacher just reaffirms my faith that God is always at work.

Speaking of God...I am a Christian and hope to raise my children to love God and be faithful to His word. I'm trying to come to terms with how Joshua's autism and my faith intersect. I can't help but question God and why he makes it so hard for me to go to church and worship. It is painful and heartbreaking taking Joshua to Church because he resists it every step of the way. He says all the way I hate church I don't want to go. Dragging him in and having to leave him in his class while he hangs on me and not letting go. I don't know it's just very hard to deal with. I think it's so hard seeing the differences between him and all of the other kids. The weekly church battle is so emotionally draining some days I just don't feel emotionally strong enough to deal with it.

In other news for those who have been following the potty saga...not much has changed. He still has accidents and it's so frustrating. I've been praying about this since he was 3. I'm at my breaking point and don't know how much more I can deal with.

We booked a trip for May to go to Florida for a week. We'll be staying at a resort and plan on going to Legoland one day, seaworld one day and Magic Kingdom one day. We'll be traveling with the in-laws. Joshua is excited about LegoLand but I showed him pictures of Magic Kingdom and he said he doesn't want to go there. I thought about it and decided that he doesn't have to go. He's going to hang out with the grandparents and we are just going to take Emily. He hates rides, loud noises, and crowds so what's the point. He'll be happier at the resort at the pool. Part of me feels sad about this, what kid doesn't want to go to disney world. Well, my kid. On the other hand I'm actually pretty excited to have a typical day with my typical daughter going to Disney world. (I made the mistake of telling her about it) Everyday she asks when will we be at Disney World and she's telling everyone we're going to disney world. It's going to be so much fun with her. She LOVES riding rides. If she is tall enough she'll get on the ride, this girl has no fear. NONE.

That's all I got today folks, not a lot of wittiness today to offer you maybe something funny will happen this week to share :P.

It's been a long road....

But the end is in sight (only for another beginning...I'll get to that in a minute...)

A year ago I sat in our formal IEP meeting surrounded by 11 people. Some on "my team" some part of the new team and administrators from his new school. It was the kindergarten transition meeting. After introductions, they turned the meeting over to me to introduce myself and provide my concerns. I began my little speech about how I wanted it ON THE RECORD that I thought it was insane that we were being forced to put Joshua into Kindergarten even though he could really have benefited doing a transitional K program. See, he turned 5 the same week Kindergarten started (he's year round school starts in July). I fought them on this but once they meet the age cut off they had to move into kindergarten or fore-go services. We couldn't afford for him to lose a year of services. But I wanted an official statement in the minutes recording my displeasure with this. The minute I had to open my mouth and really advocate for Joshua and the reality of the situation I couldn't help but sob. Of course, they were polite and acknowledged the issue but nothing they could do so we need to move on...blah blah blah.

Typical IEP meeting proceeded where I said I know my kid he needs this and they said, no not really he needs this, oh we don't do that but he needs that...back and forth back and forth until somehow an agreement was made and Joshua's Kindergarten IEP was finalized. Then the reality hit a month later....he had to actually GO to kindergarten.

I tried to tell them that transitions would be hard and separations would be difficult. The first two weeks Joshua was a saint at drop off, heck he even looked like he was enjoying himself....and everybody was like "see we told you not to worry..." But I knew my son and I knew that the minute he realized this was an EVERY.SINGLE.DAY thing the honeymoon would be over. About two weeks in the tears started. Carpool was no longer a breeze....he refused to get out of the car. I looked to others for help on how I should handle this. Most days I had to drag him into school and listen to his plea's for saving. I cried most days too. I knew it was just the beginning. Most people probably just saw an over protective mom and tried to reassure me that he'll be fine he'll get used to it. They didn't understand that my tears were something deeper because I understood the truth of the situation, he wouldn't get used to it not for a very very long time and I knew I could not listen to him scream every day. I didn't have the emotional capacity to bear the burden. I'm a sensitive person as it is and mama bear instincts come out pretty quickly.

Well, since me walking Joshua into school every day and listening to him scream and him willingly getting out at car pool was not going to work I needed to get creative. So we signed Joshua up for before school care held at the school by the Raleigh parks and rec. This meant for a longer day for Joshua but it also meant a transition time of play before school work started. Also, it meant Matt would drop him off on the way to work instead of me. He still cried when dropped off and had issues but I wasn't there to hear it therefore his cries were not drilled in my head the rest of the day. Also he wasn't crying in front of all his classmates, there were kids there but it was a small group and a spectrum of kids from all grades. It took most of the year but this past month or so drop offs have gone remarkably well and we are happy with the situation.

He finishes Kindergarten in 4 days and then has a week off and then we begin our first grade journey. I think this transition will go much better. But I'm sure the year will bring many more ups and downs but I know I have watched a boy grow so much over the past year that I can say with pride and adoration that Joshua is ready for first grade. The only tears I cry now are those of heartfelt pride. The key to his success lies in the support of his therapists and resource teachers at school and we were so blessed with an amazing teacher and TA who has just loved Joshua all year and made sure that he succeeded.

Now I think it's time to plan a MNO and take a deep breath and have a few drinks...

I've always known that Meds were good....

At least for me, meds have been a godsend. You do not want me off my meds it is a bad bad thing.

Well we started Joshua on meds 1 1/2 years ago and it's been good and bad but little improvements over time. Well we decoded his Current medication was not doing enough so we made the decision to change his meds again. We went to his doctor and agreed to try vyvanese.

Well I went into day one cautiously optimisic and I noticed he was leas hyper but didn't do cartwheels just yet.
It's day 2 and if I could do cartwheels I would. Today has been amazing and I'm still cautiously optimistic but it was a very promising day.

First one of his best friends was over this morning and he was not hyper and stayed engaged and had a blast playing video games together.

Well the most amazing thing happened while I wasn't at home. Today matt told Joshua to put the game controller down and come have lunch. Wait for it........
Without a tantrum, meltdown or even a whiny complaint he put his controller down and went to the table. He politely asked daddy how much he needed to eat before he could go back and play. Matt told him all of it. And he did. This is amazing eating battles are a nightmare and stopping him from doing something he loves never goes well. Not only did he eat all of his food he then politely asked to be excused. Whose child is this and can I keep him.

Again I remain cautious and hope this lasts. But today I say loud an proud...meds are good and it's a family thing :)

The noise noise noise noise

Some days I wonder who has the sensory issues...maybe it's me...because the constant noise drives me crazy. I long for our school days to resume so the house can be quiet for a few hours a day. My kids are non-stop talkers. Be quiet please.

In the car is the worst. Here is the conversation that took place yesterday while I was driving.

I'm on the phone with my sister trying to talk to her over the kids yapping in the background. I must have made a comment to Tammy about something being stupid.

Joshua: Mom...mom....MOM....MOM....I have something to tell you....

Me: I'm on the phone...be quiet.

Joshua: It's really important!

Me: What is so important.

Joshua: You said Stupid.

Me: Sigh, sorry.

Emily: Mom...mom....mom.....

Me: (Still trying to have a conversation with Tammy) Exasperated I loudly say "WHAT!!!"

Emily: Joshua said Stupid...

Me: silence. Back to my conversation with Tammy

Joshua: Mom...mom....Mom......I need to tell you something important...

Me: WHAT?!?!?!??!?!??!?!?!

Joshua: Emily said stupid....

Rinse, Repeat, continue....Gun to my head and pull trigger!

The questions and comments are non stop all day... Mom, Joshua's hurting me....Mom, Emily's being Annoying, Mom Joshua is annoying me....Mom, can I have your phone, Mom can I play video games, mom can I have a snack, mom can I...Can I....Can I.....

Or when they ask something and I say no.... JOshua's new thing he does in the most whiny voice ever...."But whhhhhhhyyyyyyyyyyyyyyyyyyyyyy"

Sigh....


To end a few random funny things my kids asked in the last 24 hours...

On the way to bed last night Emily asks out of the blue: "dad can I have a tv in my room"

Today, Joshua runs to daddy and says "Dad can you build me a computer?"

Daily Mantra: The days are long but the years are quick....the days are long but the years are quick...the days are long but the years are quick....thank god the years are quick (just kidding...I really do love my kids just not the noise).

Summertime

So two 1/2 weeks ago Joshua tracked out and Emily had her last day of preschool. The first week was a breeze with the kids. It didn't hurt that we spent the week in Myrtle beach with my parents. The last week and a half have been hellish. I'm fine with one or the other one at home but put them together for a few weeks all.day.long and it's constant whining, bickering, tattling and crying. (the crying is mostly me ;))

I have went out of my way to keep the kids active and do fun things with them. But I'm ready for Joshua to go back to school next Monday. Sadly, Emily is stuck with me until July 11. I found a summer camp for her from 9-1 Monday through Fridays. She will start in july and go until mid august. Six glorious weeks with mornings all to myself. I am counting down  the days. 

I love my homeschool buddies and I am most definitely surrounded by them. However I can't for the life of me figure out how you spend day in and day out with your kids without blowing your brains out. 

Am I the only parent who looks forward to sending my kids away daily :p. 

Am I really the expert here?

Am I really the expert here regarding my son? I keep reading these posts and blogs and IEP helpful resources that say you are your child's advocate and you are the best expert about your child. God, I hope not. That in itself is a scary thought because if I'm the expert he is really screwed. Yeah, I can point out all of his crazy behaviors, his weaknesses, and his short-comings but I have no idea what to do about them or how to fix them or if we need to fix them or why he does and doesn't do certain things. So please stop looking at me for answers. I really don't have any.

Joshua gets dropped off at school during the before school program ran by the community center. We started doing this to give him a chance to ease into school instead of being dropped off and immediately sent to class to begin morning work. This way he gets to go in and play games and if he's going to meltdown at least it's not in front of all his class mates.

For the most part, Joshua behaves pretty well at school. He listens and follows directions. Right now, I felt that our biggest problem was the stupid potty accidents (see I can't go a single post without mentioning it).

Until the phone call last week.....the lady who is in charge of the before care program calls. They have been really great with Joshua. However, it turns out Joshua has been having a few issues. Here is how the conversation went.

Lady: Joshua has been withdrawing from the group play and going over to sit by himself and not particating.

Me: He has autism.

Lady: he's been trying to run out the door into the hallway.

Me: He has autism.

Lady: When it's time to line up to go to class he runs around the cafeteria like it's a game and doesn't listen.

Me: He has autism.


Look, I'm not using autism as an excuse here. I get it these are new behaviors that you are seeing during your time with him. I know he has not done these things in the past and other than melting down during drop off he's always been pretty good about participating and listening. But these are the behaviors we see at home. My guess is he is starting to feel really comfortable and acting out. I have no answers for you. I haven't figured out how to deal with these issues at home so I don't know what to tell you. sorry.

Joshua's annual IEP meeting is next week. I know I'm supposed to get prepared. I have his current progress reports and his current goals. I have no idea what to expect for first grade or what services I should be fighting for. I have a feeling most of our IEP meeting will be about his potty accidents. And they will be looking to me for answers and all I will be able to say is...

He has Autism.

So to end, I am pleading can someone else please take over the role as expert because I clearly suck at it.