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One less thing…

One thing down…

Many more to go….

Court is done, and everything I coud ask for to ensure Diego will get what he needs on a regular basis was approved by the judge.  In fact, Diego’s father didn’t even show up. 

Random right??

But prayers were answered and I am so thankful for that.

As I was filling my sister in she made a comment that I didn’t seem to happy about the outcome.  I had to explain to her that this is very bittersweet for me.  It is foreign to me to take a child away from a parent he loves so much and only allow a single weekly overnight visit, I know how much Diego loves his daddy.  But at the same time I can’t argue the fact that over the past two months (since spending this decreased time with his father) that Diego hasn’t had a single violent tantrum and his language has improved significantly.  Just yesterday Diego’s teacher commented that Diego is really using his language much better in school and at home he is saying please and thank you without being prompted about half of the time.  At the end of all of this it isn’t about me or Diego’s father, it is about what is ultimately best for Diego. 

So that is done. 

I will say that I am alarmed that the courts seem to have such little knowledge about autism.  Even my attorney mixed up sensory diet vs food diet for D.  We don’t do the GF/CF diet but when she presented my case to the judge she mixed the two up for the umpteenth time, even though I have explained to her a dozen times what a sensory diet is. 

I snickered in court when she made the mistake again…man all of that money she charges and she still couldn’t get it right…lol…whatever… it is done!

When all is said and done, it really is the things that seem so little to others that are major to me and keep me going.

I couldn’t share this fast enough

I get down on myself as a parent very often. 

Here lately this has especially been the case. 

God must have known because I got two of the biggest pick me ups I have received in a while.  First when I dropped off Lyric at camp this morning, his camp counselor looked at me and said that Lyric is the most amazing kid she has ever met and that I have really done a great job raising him.  Fighting back tears I thanked her from the bottom of my heart. 

Then, when I picked up Diego from school his teacher told me that he was doing a puzzle WITH FRIENDS  (not alone which has often been the case.)  As if that weren’t enough, she said that Diego LOOKED AT another child and SAID “Let’s work like a team”!! 

Yes

my kid

did

that

today!!

I cry every single time I think about both events. 

Despite the stress, angst, and sadness it appears that I (and everyone who has a hand in the boys’ lives) are doing a pretty good job.

Most of all if gives me back some of the hope that is lost on the rough days. 

As if the day could get much better, I received a copy of the mediator’s report and she is recommending I get the custody arrangement that I have asked for.  The judge is the only one who can make it final, but we are headed in the right direction.

The boys and I ended our Friday with a trip to the movies.  I am always hesitant about taking Diego to see a movie because it is sensory overload for my munchkin, but he just wouldn’t stop talking about “Despicable Me”.  Our Saturday is full tomorrow so the sensory friendly viewing wasnt gonna happen and although Diego’s hands were drenched (sensory bag be damned…lol) from the 90 minutes of stimming  we really had a blast.  “Despicable Me” is by far one of the best family movies I have seen in quite some time.  There were times I couldn’t stop laughing and a lot of the time one could hear D and Lyric laughing louder than everyone!! 

What a wonderful end to a roller coaster of a week.

Teasing

Lyric attends a YMCA camp during the summer, it is a decent place and he has fun every year. 

When I picked Lyric up from camp today I found myself fighting a breakdown as I watched a boy,about 7 years old, who had a potty accident,  being relentlessly teased by two other boys around his age.  His dejected,dirt streaked face broke my heart and just as I was walking up to the boy a camp counselor intervened. So I went on my way as the counselor was admonishing the other boys for teasing the other.  But as I went on my way, I found myself struggling to take each step.  I felt like I could just have collapsed right there.  I was so sad for that little boy, and for my little boy who may face a similar fate at some point in his life.  The hurt the boy felt while being teased was palpable and I just wanted to hug him. 

I doubt that the boy had special needs, but who knows?  Maybe he did.   All I know is that when I got home and reflected on it, that I cried hard for some time.  

I brought it up to Rickey, and he said teasing is just a part of life and that it is fine. 

But to me it isn’t “fine”. 

Especially with our kids, our kids who have a hard time communicating, never mind defending themselves. 

All I can think is, what if that were MY baby and it produces such a gut wrenching horrible feeling.

Now if you all will excuse me I am off to get the best hug/ear grab ever, that always seems to make things right, even if just for a moment.

Betrothed?? ;)

My little sister started dating her man and got married recently, during that whole process Diego met a little girl named A. A’s father is a great guy and my sister’s hubby’s best friend,  it just seemed natural that he was family…

A is one of those little girls that runs things and her strong personality is perfect for Diego, because she doesn’t give him much of a choice to interact.  So once he got comfortable speaking to her it was over.  A is kind of a tom boy, this was perfect since Diego’s idea of a good time is rough housing!  The night of my sister’s wedding I brought both A and Diego home early, poor A wanted out of her dress and into some shorts, and Diego had enough.  He really held it together considering all of the noise and people.  My mom, Rickey, and A had a big part in this.  Thank God for the all of them. 

Anyway it got late and I made a bed for the two of them in the back room so that they could wind down before A’s dad came to get her and in the hopes that Diego would pass out before midnight.

HA!!

Not long after  the kids settled down a bit Diego says, “Mooooooom A kissed me!! on my cheek!!”

I walked to the back room and saw Diego wiping his cheek as if there were poison on it and A giggling.  I asked what happened again and Diego replied, “the doggy kissed her cheek and then she kissed me!”

Ay mira!!

Diego had been carrying a stuffed puppy dog around all day, when I asked if that was the doggy that kissed A on the cheek, he told me it was.  A, still giggling told me D made the puppy kiss her cheek so she kissed his. 

I was dumbfounded

First off I really thought it was pretty cute that Diego was attempting to show affection and then second I was at a loss as how to handle the actual kissing of the cheek.

Seriously?!?!

They are four years-old!

🙂

I explained to the kids that it was great that they wanted to show each other that they liked one another, but that is was probably a better idea to hug instead.  While I was explaining this Diego was practically wiping his cheek raw, it took him a good while to let it go. 

Poor guy, he didn’t know what he had gotten himself into!

Once the kids were settled again I walked out of the back room into the living room and told Rickey what happened.

His response??

“That’s my boy…”

*sigh*

The ongoing word in my family is that Diego and A are now destined to marry, lol…I don’t know about that but they take the best pics together!!

It might seem silly, but I cherish these easy friendships.  Probably because the reality is it may not be so easy for Diego later.  I thank God for the kids that seek Diego out and make him their friend. They are so patient and so kind.   I have noticed that Diego is getting tougher to get to.   It was quite clear the other day at his school, when a couple of kids, at different times tried to interact with him and he was oblivious to it.  Diego starts his new social skills group in a couple of weeks and I hope it helps.

There is so much else to blog about, but this just seemed appropriate today.

Good Enough??

I had the pleasure of posting a guest blog over at  autism mommy therapist today!! 

You can go there or read below!

“When I waited for Ryan at the end of the school day, I would study the Good Mothers. They were amazing and marvelous, right out of a magazine. They brought cupcakes when they were assigned to bring cupcakes. They remembered gifts for the teachers on Valentine’s Day and Christmas, always wrapped in color-coordinated paper and ribbon. They exercised regularly while the kids were at school. They left successful careers to devote themselves to motherhood. They were patient and kind. Around them I felt the way I did in press boxes early in my career: I was out of my league, unable to grasp how to be as good as they were. ~
Joan Ryan “The Water Giver”
———————————————————————————————-
R and I had a “discussion” a few nights ago…well it was more like R talked and I listened.

While his approach wasn’t gentle, it was definitely an eye opener and very necessary. He says that I have become consumed with Diego’s autism and that my quest for perfection is going to send me right into a nervous breakdown. He told me that he is so concerned about me, that he thinks of it constantly.
He is right, I eat, sleep and breathe autism and have done so since we got a name for D’s issues. Logically I know that this isn’t good for me or my family, they need me at 100% and I can’t be at 100% if I am not doing anything for myself. I can’t tell you how many hours I spend researching various therapies while beating myself over the head for not being able to do more and I guess at the end of the day, that is my real problem, always feeling like I need to achieve perfection.

Not only with Diego but with all I do.

I am constantly plagued by thoughts of: the house is never clean enough, I don’t spend enough time with Lyric, I am not keeping myself up like I used to, not enough adult time with R, I’m not doing enough at work, not being a good friend….etc…you get the picture.

The problem with expecting perfection is that I let myself down often.

Why do I need to be perfect?!?!

I don’t expect perfection from anybody else!!

Who knows, but after talking to R it is all too apparent that my quest for perfection has to end. Being hypercritical of myself is leading to other issues with our relationship and that isn’t good. Somehow I have to be alright with the fact that I can’t achieve perfection.

This is way easier than it sounds, but I know it is crucial to my happiness.

So how does one become ok with being “good enough”??

Hell I don’t know, so I discussed it with Juan. Juan is the therapist that consults with me about parenting Diego. I went to see him last Saturday and the second he asked me if I was ok, the tears started flowing. I apologized and told him I had a very hard week and he simply said “don’t be sorry”. Then all of a sudden it all came out, everything I have been thinking and feeling since D was diagnosed with an ASD. I don’t think I have ever been so forthcoming with anybody about it prior to this. Juan is a very stoic man, who quotes psychological literature often and rarely says anything out of emotion, and I like him this way, seeing as how I have enough emotion for at least three people. Two people like this trying to problem solve would just be silly.
Anyway, Juan began to tell me about Dr. Daniel Winnicott’s school of thought on the “good enough mother.” You can read more at the link, but basically I am not doing my children any favors by doing everything for them. Being “good enough” means giving them the tools to deal with obstacles in life as they arise. This is in stark contrast to what I do now. If I don’t stop what I am doing, I may end up resenting my beautiful monsters and turning them into narcissists.
So with this concept of “good enough” starts a new journey, not only with parenting, but in life. Juan and I sat down and came up with some concrete ideas about how to feel alright about being “good enough”.
I can’ t control everything, so therefore I should do all I can in any given situation and then ride it out. If the result isn’t what I want, then it is back to the drawing board. I am excited about this and really think it will make me so much happier in the long run.

Happy Mommy=Happy Family

What is good enough to you??

Indulge??

 

This morning on our way to school;

D: *in his carseat* “one….two….three”

Me: “Ok Diego time to get out of the car”

D: “No wait!!”

Me: “What’s up?”

D: “I need to save these three!!!” *opens his hand that is holding three ‘warm and loved’ cocoa puffs*

Me: “Ok D, let’s  just put them back in the bag and you can grab them after school.”

D: “No mommy I can’t, they will get mixed up”

Me: *stumped* “that’s ok honey they are all the same.”

D: “No these are for you, Rickey and Brother”

Ummm I’m not sure his face could have been any cuter….I promise…even cuter than the pic above! (if I do say so myself 🙂 )

Me: “how nice of you to share poppa!!, but it will be ok if you put them in the bag and then you can give them to us after school”

D: *now visibly annoyed* “MOM NO…….these three are for you guys, not the other ones…they need to be separate….”

So what did I do??

I wrapped the three cocoa puffs into a napkin so that they were separate and then placed them in the plastic bag.  It seemed very important to him, in fact he probably would have had a full on meltdown if I asked him to put them in the bag one more time. 

So once drop off was done and I was driving to work I started to think about the fact that I indulge a lot of  Diego’s obsessions and compulsions, especially the ones I think are harmless. 

I mean it doesn’t hurt anyone and I am challenging him everyday in other areas, so does it really matter? 

But maybe on a grander scale it does matter, because there will be someone at some point that will just treat these seemingly small things as an annoyance and not do as he requests.  How will he deal if I have not prepared him for this?

Eh just something to think about.

I have been questioning a lot lately as far as my parenting and interventions go.  Diego has started stimming, his hands are in his mouth all day everyday.  I have tried everything on the sensory side of things and nothing curbs it.  But from what I have read about stimming it helps calm him and allows him to  concentrate. 

So should I really try to stop it?? 

I mean aside from the fact that a katrillion (yes a katrillion) germs lurk on his hands any given day.  His hands are not bleeding or chapped so should I just carry hand sanitizer everywhere we go and let him go to town???

Ahhh I am so confused….

Thoughts please!!

We had a nasty little earthquake last night. 

I hate earthquakes so much. 

There is no warning for when they are coming and no idea of how big they will be until after they happen, this makes an earthquake the worst natural disaster in my opinion.  Last night the ground moved and their was an eerie rumbling sound.  Usually when we have an earthquake they house kind of sways, but I promise the ground moved under my feet and it was a trip.  Poor Lyric just about had a heart attack and Diego was indifferent.  We had the boys hang with us in the living room for a bit, but eventually put them back to bed when it seemed like the earth had settled for the night.  As I was tucking D in he gave his reasoning for why earthquakes happen.

D: “I know why earthquakes are here mom.”

Me: “you do??, why??”

D: “It is the earth talking to us.”

Kind of deep right?? 

Especially when you think of all of the damage being done to our planet right now (read BP disaster). 

I was watching “Life After People” on the History channel late last night and it was quite an eye opener to all of  the harmful things that we do to our environment that we really don’t realize.  I have never been a super “green” person, but may start taking some baby steps onto that path.

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!***

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.

Fog

Its been just about two weeks since my last blog, which found me the lowest I have been since I figured out D had an ASD, and in these past two weeks a lot has happened.  Most of it I spent in a grief-stricken fog, but was present nonetheless.  The most interesting thing about this is that I was completely efficient, which is encouraging….I think…good to know I work well on auto-pilot.

Court happened, a temporary order was made in our favor but D’s father and I have to go back to mediation and the final order will be made in July.  Hopefully it’s said and done at that time.  As bizarre as it is to say (type), D’s dad hasn’t been very hostile to me, in fact I think he looks almost at peace.  I wonder if deep down this takes a load off of his shoulders.  Caring for D requires a lot of energy , patience, and planning most days, and maybe he figured out he wasn’t able to do so.  Anyhow that is what happened with court.

Met with the geneticist and she wants to look closer at D’s chromosomes and will go over everything after that is done.  I am still processing my own devastation at my genetic make-up.

D has been adjusting to the change as best he can.  We had a major tantrum on  Saturday that went a little something like this:

Me: *putting D’s cup of juice next to him in the back room and walking away*

D: “YOU DID NOT GIVE IT TO ME THE RIGHT WAY!!!! *picks up cup and sets it on the counter* “NOW GET IT AND GIVE IT TO ME RIGHT!!”

Me: *thinking* seriously???? did he just order me to hand him the cup??

Me: “Diego since you put your cup back on the counter, you will have to get it yourself.  I will not bring it to you again”

D: “GET ME THE CUP….THE RIGHT WAY!!!”

That went on periodically for two hours, Rickey got home at the hour mark and I was in dire need of a  ‘mommy time out’.  Each time D would walk into a room I was in, screaming about the cup, my entire body would tense up and I would get this horrible feeling in my stomach.  I had pulled out all of the parenting stops I knew, but he just wouldn’t stop screaming for longer than 10 minutes…wait….I think one time I got a bit longer, but not by much. Then as if you had flipped a switch he was done and all was peaceful in our home. 

*sigh*

The past two weeks have been like this, and I understand why, it just hurts me to watch his rigidity get so bad.  I am at a loss for what to do when he gets like that and that makes me feel so useless.  I just want to give him peace.  At school he maintains the best he can, but the daily meltdowns have started again 😦 When Gabby was there he was doing so much better.  We both miss her so much. 

I feel a bit better than I have in two weeks and this keeps me hopeful that the rest of this emotional fog will eventually lift.  I have found myself re reading comments on here for strength and that has helped very much.   

People that “get it” are a blessing

*photo-allvidhaze.com*

A Different Kind of Mother’s Day

I remember posting a blog on Mother’s day when Diego was still a baby. In that blog I explored how hard it must be to parent a child with special needs, and wrote that I could never really handle all that those super moms handled everyday. 

Fast forward 4 years, my life now revolves around my child with special needs and so far I have been able to pull through it. 

Granted some days the thought of a padded room in the west wing of my hospital sounds like a vacation, but I am still doing it.

We are still doing it.

Through Diego’s challenges God has shown me that I am much stronger than  I ever thought I could be.  I can survive soul crushing news. I can pick up all of the pieces of my broken heart, glue them back together and pick them up again when my heart has shattered for the third time in a week.  I have learned that emotional pain can manifest itself physically when severe enough. 

I now celebrate things most parents do not, like how Diego pretended he was a dog yesterday, or how he championed through writing on his Nana’s mother’s day card.  These things required so much from my little boy.  If Diego’s fight to succeed is any indication (and I think it is) of how he will handle life’s challenges I am quite sure he is going to be an exceptional man.

I see Lyric in a different light as he leads his brother in life and am comforted that when I am gone, he will be here to watch over his brother.  Lyric is such a great son and brother and is going to be such an amazing husband and father when he is older.

And the best part of all of this is that I have something to do with how amazing my two boys are. 

I am beyond blessed that God chose ME to be their mother.

On a slightly different topic I need to thank every mother that I have met online through blogging.  Each one of you have been a light in many dark times.  Happy Mother’s Day to you ladies, your perseverance and dedication to your children is inspirational.