Defiant on all levels

I have not really had anything positive to say my last few postings. Unfortunately my son’s level of defiance is just increasing.  He is having several tantrums a day and it’s starting to interfere with therapy. He will just scream for 3 hours straight.

It also interferes with regular daily life, because he is throwing tantrums everywhere we go.

Everyone is scratching their heads and we are not sure how to handle things.

I am a bit stressed over this myself and physically tired because I’m fighting off my son at times.

I hope this phase passes soon and I can write some good stuff.

Weekend tantrums

My son has been improving in his therapies according to the data.  But he has been having A LOT of emotional distress and not a happy camper.

Maybe our separation is getting to him and he is not getting the attention from his father that he wants and needs?? I don’t know.

Yesterday he was with his dad and screamed the whole time.  Then this morning when his father stopped over my son started the tantrum again but he was fine before he saw him.

He is now having a major meltdown for something that happened earlier. 

We went to the pumpkin patch and they have all these inflatable houses, castles and slides. One slide in particular got my son’s interest-The Shark Slide. All the kids flock to this slide.

My son would go up and slide down and laugh with glee. He discovered that if he lingered at the bottom longer he would get tumbled on by the other kids and this made him even more happier.  He started to linger longer and longer at the bottom and ultimately created a safety hazard. Kids would fall into him and worry about hurting him and he would just laugh. The parents of the other kids doing the tumbling would yell for them to be careful. It wasn’t there fault though, my son was just sitting there obstructing the flow of the slide.  He sat in the middle of the slide more than he actually did any sliding. People began to look at him and at me.

I started to yell for him to come down. He would look every time I said his name, but then turn his head again and lay in the middle of the slide waiting for kids to bump into him. This went on for too long.  I found a little girl who saw my frustration and asked her to drag him off the slide for me.  She did and everyone was happy.

I couldn’t have him up there obstructing the flow of the slide and more importantly he almost got hurt several times with some of the big kids crashing into him.

As we left the pumpkin patch he started yelling and screaming because he wanted more shark slide.  For the rest of the day he threw mini fits. His latest was a meltdown in the grocery store and he sat in the middle of the parking lot screaming. I had to pick him up and carry him to the car and then he decided he didn’t want to get in his car seat.  When we got home, again the sitting on the ground refusing to move. I had to lift him again while he cried and kicked.

Finally at home, I put him in a time out and he is sitting there saying ‘all done crying’ over and over again. But he isn’t all done crying.  I told him, he had to be quiet but he kept saying ‘all done crying’.  I decided to get my cooking timer and set it for 3 minutes and put it in his view so that he could see when the timer goes off he can then get up.  I’m hoping that makes a difference; something he can actually see and measure.

Sometimes with parenting, you just truly do not know what to do.

Feeling better

I know my previous post was sort of a downer (sorry), but the reality is, it gets hard sometimes.

I need to vent and feeling much better this week. I think I just felt so isolated and frustrated that certain family just didn’t seem to help or support.

At any rate, therapy went well this week for DS and this weekend he will spend some time with his father and I will spend some time doing some stuff just for me.

Autism Vent

I am not sure if you all know this, but for me, Autism is a lonely path.  I don’t think I can explain the evil looks I get on a daily basis when I’m out with my son.  He is still learning and doesn’t quite connect or get things yet, so he has frequent meltdowns.  Sometimes I want to yell ‘he has autism!!!! give us a freakin’ break and stop starring at us!’

 

Kids look at my son like he is from Mars because he can’t pick up the social cues. It’s hurtful at times to see a young child look at my son with such disdain.

 

My child’s own father, does not even try to get to know about his disorder and decides to retreat into his own world to avoid his child.

 

My mother hangs onto hope that my son will be ‘okay’. I’m all for hope, but you have do act and do something in order to achieve something.

 

My husband’s mom does not care to acknowledge my son’s disorder and thinks all the medical doctors and psychologists are wrong and that he will grow out of it. Really? I wonder at what age should I hit the panic button; okay the kid is 10 and still not putting a sentence together, now you can worry.

 

This journey is damn hard and it’s damn lonely.  I think I’m just baffled why it has to be so lonely.  Why does no one in my family seem to care?  What is turning your back going to accomplish?

 

Would it kill someone to sit at their computer and goggle ‘Autism’ and just read about it? I mean, would it?  What harm can it cause? It will show me that you are interested that you are providing some support even if you are not in my household. I don’t mean, you the reader of this post, I mean my son’s relatives.  I have been fighting alone for 2 years and I just for the life of me, don’t understand why no one has helped me? I feel like some secret conspiracy was set up to test my strength as an individual.  Some memo went out that said, don’t help her, just turn your backs on her.  I think this will always be a mystery to me.

Sorry for the pity party. I just had to get it out.

I see letters and other stuff

Technically, I don’t see letters, but my son does.

He sees letters in everything. He can look at curtains pull back and see an upside down ‘V’.  He’ll look at a chair from the side and see the letter ‘L’.  He has now taken this on to be a sport and will do it all the time. I think it’s really interesting.

The week has been slightly rough.  I thought moving into a new school district would be easy and it’s actually easier, but there are still small battles that pop up.  I think by the end of the year, I should invest in a special ed lawyer. It’s starting to turn into a battle every other week with agencies and therapists and the school district and I can use some support from someone who knows the law.

On a good note, S is doing so well and so darn cute!  He is talking so much. I can’t believe how much progress he has made in a year with his development. 

I’m doing really well too. Today is my birthday! I told S today was my birthday and he said, ‘happy birthday, eat cake’.  My friend is taking me out for the day and S will hang out with his dad.

One year older! Time really moves quickly. I try not to get hung up on age, but sometimes I just can’t believe how old I am.  Anyway, I’m happy and S and I are healthy that is all I can ask for.

More hugging

Okay, it’s out of control now. I’m really thinking it’s a sensory issue.  He wants hugs all the time now. When I’m driving, when he is in the bath tub.  He wants hugs from the cable guy. I don’t want him hugging strangers. If he doesn’t get these hugs he whines.

Someone recommended laying him down and rolling a ball over his body. They also suggested squeezing his limbs from toe to head throughout the day.

He is also bouncing and jumping A LOT.  For this, I will try designated trampoline times.

I’m also thinking about installing a chin up bar in his doorway so that he can hang upside down (supervised of course).  My friend said hanging helps her son to organize and focus.  It can’t hurt to try it.

He seems like he is on sensory overload and I need to figure out some ideas.

First week in our new place

This is my first week as a single mom in a new place.

DS did not adjust as quickly as I thought he would. He seemed weirded out the first few days.  Now he is totally adjusted.

I don’t think he likes his room so much, so I have to figure out a way to make it more inviting for him. It’s his same stuff, but he just does not want to be in there.

He loves my bedroom though.

We are both settling in nicely and I’m very happy!

First week with 25 hours

S is doing pretty well with his new schedule. I thought he would be totally unbearable, but he did great for his first week.

I think because he was use to the people and facility, so that helped. I am looking forward to seeing even more progress and the therapist are extremely professional and are taking his delays very seriously, which I appreciate.

At my former school district, they didn’t seem like they cared at all. This is such a refershing change.

One thing that is concerning thought-S is really turning into a hugging machine. I like that he hugs, but it’s starting to seem inapporiate. He wants a hug all the time now and starting to ask from anyone. I don’t really want him asking strangers from hugs. I am not sure what to do at this point. I think it’s a sensory issue though-so I guess I should resort to my OT book.

One year ago… a look at my son’s progress

Sept 07; here is a profile of my son

~ He had about 50 single words. They were not clear words though. He would say ‘nt’ for ‘want’.  ‘Booee’ meant ‘cow’.  ‘Ness’ meant ‘Medicine.  He would go ‘woof woof’ for dog.
~ He could not follow any instructions. If you could even get his attention to give an instruction. He was content spinning around in his own world.
~ He only played with his train set.  Just pushing them along, silently and intently.
~ Zero Eye Contact.
~ He would not respond to his name.  You could scream it he would not respond.  10 times, no response.
~ Very limited receptive language. I could not decipher if he knew anything because he did not respond to anything.
~ Most kids move when they hear music. But S would not dance or move to any music
~ He had a huge bloated belly. I always addressed this with his former pediatrician and he said this was normal. I disagreed. His belly was so bloated, more than the typical toddler.
~ No matter what I gave him, his poop was very hard and infrequent
~ He never farted! Another thing I thought was strange. But again, no one listened to me.
~ He didn’t seem to care or notice if parents were around
~ No interaction with peers
~ At the park, he was interested in the strollers and not the kids or playing
~ He would run non-stop back and forth through the hall
~ Horrible sleeper at night
~ We had episodes of head banging
~ Horrible Temper tantrums
~ He did not solid foods. By Sept, he did start eating cereal and oatmeal, chicken nuggets (pre-GFCF)
~ Could not sit down in a chair even to watch his favorite show
~ Could not express needs or wants
~ Never said Mommy
~ Poor climbing skills
~ Could not stand on one foot
~ He would just sit and spins all his wheels
~ No pretend play
~ Did not play with toys appropriately

Sept 08; here is a profile of my son

~ Cannot count how many words he knows. Hundreds and hundreds.  Even knows two languages.
~ He is starting to form short sentences. ‘I want a hug’ ‘I am hungry’ ‘I want to go to Scotty’s house’ What are you doing?’….
~ Following directions.  ‘Go put this in the kitchen’ ‘Go in your room and get a book’
~ Verbally expressing needs and wants without pictures or cues. ‘I want to watch Little Einsteins”.
~ Eye contact has improved
~ Dances and moves every time he hears music
~ Sings
~ His receptive language improved-Seems to understand most of what is said to him, with little instruction or prompting
~ Farts and poops on a regular
~ No bloated belly
~ Smiles and runs to me when I get home.
~ Asks for me from time to time when I’m not around
~ Plays with kids at the park.  Is sad when there is no kids around
~ Plays on all the park structure and less with stroller wheels
~ Climbs
~ Peddles a tricycle
~ Can stand on one foot
~ Eats anything I give to him.  Doesn’t like everything, but at least he tries it.
~ Spins wheels less; doesn’t run back and forth in a pattern anymore
~ Exclaims Mommy!! With happiness and glee.
~ No headbanging
~ Tantrums are better. We still get them from time to time.
~ Sleeps better.  Still not the best sleeper, but it’s a huge improvement
~ Can sit down for his favorite TV shows without getting up. Can sit down with us at dinner. Can sit down for 10 minutes on activities. All without seatbelts, vests or anything
~ Very friendly and is social. Smiles and says hi to everyone.  Tries to engage with people.  Is showing signs of sympathy and compassion.  Rolls ball back and forth and does other engaging activities.
~ Knows his alphabets and the sounds the letter makes; knows letters by sight
~ Can read a few 2-4 letter words
~ Can count to 25 and knows numbers by sight
~ Knows all his colors and shapes
~ Pretend play all the time
~ Plays with toys appropriately
~ He knows his name and his age
~ He responds to his name!!! YEAH!!!

How I got this far.
- Nutrition (GFCF,  Eliminated Food Intolerances, Rotation Diet 3 months)
- Therapy (ABA Principles, OT, ST)
- Supplements (Vitamin therapy, biomeds)
- Neurology (Seizures controlled)
- Homeschool (Preschool readiness)
- Faith and Determination

Is my son ‘cured’ or has the effects of Autism been reversed?

I don’t think so. He is still behind in all areas compared to his typical developing peers. But we are working on things, he is happy and excited to talk and learn.  I am happy to see him happy. We are taking things one day at a time and enjoying each milestone and living in the moment.

I am laying down my fighting stick

My friend told me, as a mother of a  child with ASD or any special needs, you have to have your fighting stick ready. You are fighting doctors, you are fighting school districts, you are fighting early intervention.  It always seems like you have to have your sword hand ready for battle because people refuse you services.

Well, my fighting has finally paid off. I have conquered the enemy and won 25 hours of free ABA services!!! I had to go through a lot of crazy stuff and political BS to get here, but I got here.  My son will start his new ABA program on Sept. 15th.  AND….. it’s at the same center he currently is receiving private ABA therapy.  We were paying for about 6-10 hours a week. 

On top of the 25 hours, we get speech and OT services free as well. 

It’s been about 2 years of fighting.  But I can finally lay down my fighting stick.

Well…. let’s just say, I’ll keep it at my side, I will always have my sword hand free and ready for battle when it comes to my son.  You never know.