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Long Night

Sweet holy autism Batman!!

Last night Diego was the most deregulated, hyper, irritable that I have EVER seen him.  He was a stimming mess choosing to walk in circles while biting his hands, or jumping on everyone/everything in the house seeking sensory input.  Nonsense words took the place of the proper names of things.

No matter what I did nothing helped. 

At one point he was sweating and red in the face because he had been running himself silly, it was too cool here at 6 o’clock here in San Diego for anyone to be sweating.     His therapist also noted that Diego was extremely out of sorts at their visit yesterday. 

But we made it.

Barely.

Sleep didn’t come for awhile and it wasn’t peaceful as he was tossing and turning all night.

*sigh* My monster 😦

We are set to start the Tenex this weekend.  Diego’s father has of course refused to give him any of the medication. I have worked it out with Diego’s aunt and she will give it to him at night and I will have the school give it to him in the morning when Diego is with his father once a week.  I spent a good 30 minutes attempting to discuss the specifics of the med, the people I spoke with regarding its safety and he wouldn’t hear any of it.  He is just doing it to be difficult, as his argument is not medically based just bitter and angry.

In the future if this keeps up and I can’t find a way around it, we will be in court….again

I hate court.

As if autism weren’t hard enough, I have to continue to deal with him…blah

It is August which means school is starting on the 30th, and I have been trying to get everyone together for Diego’s transitional IEP meeting and not let the anxiety about Kindergarten show. 

But my stomach is in knots. 

I am not sleeping, and top of this it is time for D’s yearly pysch eval with the woman he initially saw a year ago, whose report came up inconclusive. 

I am meeting with her August 13th and the eval isn’t being done until October. 

Should be interesting at best.

I have NEVER had a good experience with the neuropsych…EVER…but will come prepared 🙂

Happy Birthday Diego!!

Diego’s birthday party started in true to (our) life random form.  Our new neighbor of 5 days had a lady friend over and she decided that it was appropriate to start the morning, at 9am, ranting and raving about the child’s birthday party that was obviously going to happen.  I spoke with the young man(who seemed at that moment like he dabbled in recreational drugs) and informed him that it would only be for a few hours and that I apologized for any inconvenience that it may cause.  

Good right?? 

I was pretty pissed off but kept my PR temper at bay and put on a smile. 

He said no problem and walked away… 

Well about an hour and a half later I heard a commotion outside and asked R to check it out.  He asked the boys to go to their room and then told me that the young lady was yelling and throwing things at the jumper….naked… 

Yes you read that correctly. 

The crazy ass girl was OUTSIDE BUCK NAKED!! 

I looked around to make sure there were no cameras ala “Candid Camera” and unfortunately there were not.  R went outside to talk to the boyfriend and I calmly walked over to said crazy lady and asked her to stop throwing things at the jumper.  Then she yelled at me and I barked back for a second.  Then realized that I was crazy to be arguing with a naked woman obviously on drugs….I told her I would call the police if she came out again and walked away.  Shortly after I came inside R did as well and said that the guy would keep her inside. 

Only us I swear. 

We don’t live in the hood, our house is in a family area, and come on it was a kids birthday party in the middle of the day on a Saturday! 

Thankfully she stayed inside and the day went on without incident. 

The actual party was a success.  I had spent the entire week prior using my imagination to make Phineas and Ferb come to life complete with 

“Pin the Tail on Perry the Platypus” 

 

shark fin party hats made by mom and sister, poster board surf boards on the walls, whatever Phineas and Ferb decor I could find (which wasn’t much!), and shark cupcakes (made with the help of auntie Candace).  

All of the children seemed to have a great time.  I made a designated “quiet room” for those kids that needed it and a few did including my own.  It was awesome to see some of our friends from D’s social skills group and the progress that they have made.  Diego even self-regulated and hung out in the “quiet room” for a break all on his own. I was so excited when my mom told me she found him in there that I cried. 

All of the preparation worked!!  

We talked about the “quiet room” for the week leading up to the party and I am so happy it worked.  So besides the rocky start the party went well.   I know this because, later that evening, my mom and I were discussing the party and without looking up from playing with his sea animals Diego simply said 

“That was so great mom” 

I was over the moon.  All of the preparation and work was worth it when I heard him say that :). 

I think that his next birthday will be a bit smaller as 20 kids was a bit much and I would have liked to help Diego interact more.  I will post some pics when my mom sends them my way….she was in charge of photo taking…*ahem* 🙂 

My handmade shark costume was a slight hit with D, but I won’t know for a few days.  Diego never gets very excited about gifts in general and the shark costume requires him to work his imagination.  So we will see. 

A very happy Diego in his birthday shark fin hat

 ***After hearing about the incident, our wonderful landlord asked the young man to move the next day and he is no longer there..I didn’t expect her to do that but I am so thankful she did!***

Rambling….

Diego’s Birthday fell on June 1st.  His party is this Saturday and the way I have been going about it, you would think it was his wedding..lol…but seriously, when Diego was diagnosed, I promised that I would make every single birthday he had a super special one.  Especially now when the “friend thing” is kind of automatic.  So I have been on the grind looking for Phineas and Ferb decor (no easy task), thinking of games, booking a jumper, and making a shark costume….

Shark costume you ask??

Yes…shark costume…Diego wants a full body shark costume for his birthday and I can’t find one anywhere, so I have broken out the sewing machine.  The thought of the look of pure joy on his face is enough motivation to keep sewing late at night so that it is done by Saturday, and hell I’m not sleeping anyway. 

I really hope he likes it. 

PMS and ASD don’t mix.

At all.

My patience level is low.  I cry more than usual, and the thought of a padded room and I.V ativan is very comforting during this time. 

I really thought that when I got past the “this isn’t fair stage” that the “acceptance” stage would be much easier.  It is harder, so much harder that I am going to see a therapist.  I can’t seem to process that this is forever, when logically, I know it is.  I am so sad everyday, can’t sleep, and this feeling of despair in the pit of my stomach NEVER goes away.  I see parents of “typical” children and am envious.  I want to go up to their mothers and tell them to never take anything that their child does for granted.  Cherish everything, because for our kids, for my kid something as seemingly simple as playing is not.  R has noticed and said that it seems like I can’t have fun anymore.  I wish he could feel what I was feeling.  Then he would understand.  He really would.  But he tries and that is more than enough.  I will get through this.  I have to.

I took Diego to meet with the team at what will be his school next year and I am cautiously optimistic, they seem much more organized and concerned about Diego’s transition to Kindergarten than the SD district folks.  We will have the official transitional IEP meeting a week before the school year starts, so that they can actually change some things in it.  So I have some time to sit down and think about a behavior plan, and other accommodations that I want to present at the meeting.  It was nice to hear that Diego has potential, I know in my heart that he does.  It is just validating when a stranger sees it. 

 I will post pics of the party next blog!

Tantrums

As I type this D is going on 20 minutes of crying and screaming at me to stand in a certain spot, so that he can ask me nicely for some tater tots. 

He just got home from his father’s house 30 minutes ago. 

To say that these tantrums put me on edge, doesn’t give justice to how they really make me feel.  I get nauseous, want to cry, want to run away, want to give in, want to hug him, basically do anything to make it stop.  But I don’t because none of those things will make it better for Diego in the long run. So I sit quietly and wait for it to ride out, unless Diego becomes aggressive then it is time for him to take a 4 minute “break”.  He hasn’t become aggressive yet and I am thankful.  4 minute “breaks” make all hell break loose. 

I know part of why he is really so out of sorts today, dad’s house, and the holiday (which throws off his routine). There are also plenty of things that I don’t know about that are contributing to his raised anxiety level.   This is so frustrating. 

I feel helpless.

He usually saves the tantrums for home. 

He did great at  my little sister’s wedding Saturday night, he was actually more well behaved tan some of the other children in attendance, but when we got home it was tantrum central. 

It takes so much out of me and I feel selfish for writing about how hard it is for me, when I am sure it is ten times harder for him….

The tantrum has subsided (30 minutes strong) and my mom is here with Diego’s early birthday gift (a fish tank).

Peace at last.

Mental Block with a touch of Random

The pic above is from D’s first Halloween and is purely for happiness purposes (it is my screensaver at work), just figured I’d share the cuteness 🙂

*sigh*

My brain is working overtime and I am sure I will post about most of it manana…it will probably be long, gramatically incorrect, but informative 🙂

I just can’t do it today, like emotionally and physically can’t…do..it.

So instead I will write about a quick exchange I had with my little monster the other day.

**Walking out of his classroom**

D: “Mommy look I have no hands!!” *his hands are obviously behind his back, as he is having this exchange with his back to me..lol*

Mom: “D are you pulling my leg?!? 🙂 ”

D: *stops abruptly, turns around, looks at his hands and then my legs* “Mommy, I am NOT pulling your leg…SEE!!!!”

**D then turns right  back around and keeps walking**

I didn’t even have a chance to explain what I meant,  as he immediately changed the subject to seals…I really have to remember to try and not use idioms with him 🙂

Our second opinion assessment is today…I need lots of thoughts and prayers that we get the answers we need!!  Thanks

Anxious Annie

Nobody would really describe me as a super laid back person.  I can have fun and be spontaneous, but I am at my best when things are planned, orderly, and under control.  I have been like this since I was a child and believe it has been one of the keys to my success in this life. 

But…. 

Since Diego was diagnosed with Asperger’s my “Type A” self morphed into “Anxious Annie” and I can’t stand her.  I have never been this anxious, and Asperger’s is to blame. 

I now have a hard time trusting my instincts in all things Diego due to the fact all of the signs were there when he was younger and I missed them.  I lose sleep over worry about the future….the unknown….I believe Roc’s mommy calls it “anxiety induced insomnia” or  A.I.I. 

I miss sleep.

Medical professionals that I don’t know from Adam are making decisions that will impact my son for the rest of his life and I can fight and advocate, but at the end of the day I feel that the power lies with them. 

I hate that!

I don’t know what caused Diego to have Asperger’s, I don’t know how it will progress, ummm and I just don’t know!!

Not knowing=anxiety

There are times throughout the day that I am practically paralyzed with fear. 

Really. 

Like I almost have to leave work, but then remember all of the unpaid time I take off for Diego’s therapies, and drag my ass to the bathroom to get it together and make that money.

This anxiety shit is no joke.

The scariest thought is what if something  were to happen to me.  It is so scary that I won’t even go into detail about it for fear of breaking down.

I think a lot of this is natural, but in my weakest moments I seriously question how much longer I can go on like this.  There have been days that I didn’t think that I was going to make it through at all, like just about to pick up the phone, call my doctor, and get admitted to a comfy padded room. 

But I have to rememeber that I made it through those times and try to find my extra strength in the fact that I have done so. 

without divulging my entire medical history, I have been on a medication ever since my bout with PPD after Diego. 

The medication specifically targets anxiety. 

This is not that kind of anxiety, it’s different, so I am not going to take other meds and become a zombie. 

I just have to get stronger emotionally . 

Not being very good at reaching out for emotional support probably doesn’t help me much either, but I have been challenging myself to do so and I am making baby step progress. 

Some days I wish all of us ASD mommies that blog lived within ten minutes of each other. 

Silly little kid thought, but it would be fabulous 🙂

March Madness

Nope not basketball March Madness, I am referring to the March Madness that is my life!

I have been running non-stop since Diego’s assessment 02/26/2010.  Due to a wonderful person I have been put in touch with an advocate who will hopefully be attending the IEP meeting with me this Friday.  I can’t help but laugh at how ironic it is that I am fighting to prove something that I wish would just disappear.  I wish that these people with the district would understand that I would love to wake up and

POOF!!

Diego does not have the issues he does.

Not gonna happen though.

I ran into the district SLP yesterday as she was leaving. 

She is one of those people that always have that happy “oh dear” voice.  It grated on my every nerve last Friday, and nothing was different yesterday.

Basically she could look at you, tell you to go f**k yourself and you would say “thanks! I sure will!” before you even realized exactly what was said.

Diego apparently had a fantastic day while the SLP was there.

HA!

Go figure. 

My child, the one that has to constantly be prompted to say good-bye and hello, looked the SLP right in the eye, waved his hand and said good-bye…

I could only laugh. 

Murphy’s Law at it’s finest. 

My only consolation there is that as she tried to talk to him on her way out he didn’t pay any attention.  ( he also didn’t say good-bye to the three people that called it on his way out…too bad she wasn’t there to see that)

Diego’s teacher told me that she made it a point to tell the SLP that Diego was having an exceptional day and detailed how an average day goes.  I’m sure the SLP brushed that right off.  So pessimistic right??  Eh not so much…I think more so realistic.

Last night I got my copies of  “Gravity Pulls You In” and I had a hard time putting it down.  My God!  It brought back so many memories of when Diego was younger.  How I used to swaddle him until he was a year old, how I fried my vacuum cleaner motor because it was the one of ONLY things that would make Diego stop crying, the tummy issues, the way he would sniff people as a toddler, the tantrums…..good lawd the tantrums!,  all of the times he “ignored” me when I called his name, or how he would sleep with my jersey knit dress because he loved how it felt. 

The book has also served as a much needed reminder that I am not alone in this, that I am not the only parent the school district has treated like a loony toon, and the foreword by John Elder Robinson is just perfect. 

I can’t wait to read more .

After our IEP meeting this friday, March Madness will keep going with court dates, and meeting with the new school to discuss what happens this upcoming Friday.  Oh did I mention full-time work, Diego’s appointments, raising Lyric, a speaking engagement, reading and studying to become the best social skills and behavior teacher I can for Diego at  home and maybe planning this wedding reception that is now 7 months away in true recession style??

WoooooSaaaaaa ( See the movie Bad Boys 2 for this reference)

I remember a time when all March Madness meant to me was a sports bar and some good basketball games.

My how things have changed 🙂

A Visit

I just got a call from the SLP with the district and she wants to make a visit to observe Diego at school tomorrow.

Fine.

Of course she can only be there for an hour…right after nap time

of course….

I hope Diego has such an awful hour! 

Is that wrong of me….to hope that Diego has a particularly rough time just to prove to these damn people that he will need help once he goes to kindergarten….and that he gets many accommodations now???

Please pray, chant, light incense, candles….whatever it is that each one of you do so that this woman sees what she needs to, to help my baby.

Please.

On another note my sister has decided to start a team to run for Diego and all proceeds go to the National Foundation for Autism Research.  The team is called “Go Diego Go”…lol….Please see below for info.  We appreciate your support. 🙂

RACE FOR AUTISM!  SAVE THE DATE:
MARCH 27TH, SATURDAY AT 8:00am!!
5K Run/Walk in Balboa Park
 
The 6th Annual Race for Autism is a fantastic way to donate to the National Foundation for Autism Research (NFAR).  Our $30 donation will support the exploration of the development, investigation and implementation of innovative treatment programs and services for those with autism, like Diego.
 
It’s simple…
1.  REGISTER for the 5K run/walk: 

http://nfar.kintera.org/faf/search/searchTeamPart.asp?ievent=326995&lis=1&kntae326995=76BE613FB55D46D0BA6355596D5B5502&team=3672533

2.  JOIN our team and select team name “Go Diego Go!”

**If you can’t make it that day, there is a ‘run from home’ option where         you can still donate and support**

3.  GRAB your running/walking shoes and Go Diego Go!

I Am Not Crazy

 

After days like yesterday, I  second guess myself. 

Why?

I don’t know…

To the person that isn’t with D everyday for hours on end, he might just seem quirky….

Especially to the evil people of the school district. 

It is a dangerous thing that these people uneducated about ASD’s do. 

What if I trusted that with all of their education, that they knew my child best?

What if I didn’t spend hours researching and gaining the knowledge that I need to fight them?? 

What if I stopped everything I was doing for D simply because these “experts” said he was just fine??? 

I promise you that there is a less confident parent that this has probably happened to and it makes me livid!

Obviously

 I am still reeling from yesterday. 

I still want to scream as loud as my voice will allow. 

I want to look at each person that questioned  and say that I didn’t ask for this!

I don’t have Munchausen’s By Proxy. 

I didn’t just wake up one day and decide that I would like my entire life to change!! 

There are reports of  the observations of numerous professionals that say so. 

Diego has Asperger’s. 

Rickey tells me that I shouldn’t let ignorant people bother me. 

That we know our baby.

I know, but damn, when you are repeatedly questioned for hours on end…it’s just….a lot.

Watching

I wonder if I will ever stop watching…stop analyzing everything that Diego does. I wonder if I will ever stop comparing his development to the other children he is around. Ever since I suspected that Diego might be on the autism spectrum, I have done nothing but watch my poor child’s every move for six months, he doesn’t notice so I have that going for me. In the beginning it was to validate my concerns. The first psychologist we saw for an assessment basically said he was “just fine”, my gut said much different, but I still needed this validation so I watched and noted, then reported. Now I watch to see if the therapies we are putting him through are making a difference, I watch to see if there is anything new, I just watch. Rickey can tell when I am watching and will promptly tell me to cut it out and relax, all I tell him is that I wish I could.
Watching is now second nature to me.
I am gearing up for the school district assessment next week. I have made copies of all of his assessments, asked his current psychologist to write a letter outlining his challenges, and asked his current teachers to get together and write a letter. Well I asked Ms Gabby and she will get all of the input and draft the letter. I have the psychologist’s letter in hand.
New information about Diego in black and white always seems to throw me for a loop.
This letter was no different. It detailed Diego’s social deficits, specifically noting his rigidity, lack of imagination, and poor eye contact.
I actually think Diego’s eye contact has gotten worse than it was 6 months ago.
Is that even possible?!?
Anyway, I hope that all of this will help the school district see that Diego will need assistance in kindergarten next year. I am blessed that Ms Gabby has just about assigned herself as Diego’s aide throughout his day at school. Everyday I pick Diego up and speak with her she gives me a full report of his entire day and how she makes sure that he is right next to her when she knows that he is facing things that challenge him.
I am praying for strength for this next battle, but I have also broken down and contacted the ATPF Mentor Program here in San Diego. I need a parent of a child with Asperger’s specifically to help me navigate all of this and that is what ATPF offers, at no cost. I spoke with the head of the program and she said that she has some strong families that have children with Asperger’s that she could match me with. I am meeting with an associate Saturday for the intake.

I am still running on empty and now we can add insomnia to the mix.   Some days I am still not sure how I am going to make it through, but somehow I do.

Thank God for this.

As a side note I have ordered my copy of Gravity Pulls You In  and can’t wait to sit and read the words of other parents who “get it.”   I bought a copy for myself and one to gift.  If you are interested you should do so as well 🙂