Halloween fun!

Another Halloween has come to an end.  The boys get more excited every new year and thankfully 'Milo can handle it.  He's always done well and we've always taken him trick-or-treating.  Some of the costume are a little scary for him, but he's he does OK.  I see him get a little frighten, but a little excited at the same time.  It's a good 'ol healthy dose without being overwhelming.  But last night, for the first time, I could see the excitement wear off his face.  He started to be come quiet, looking around in the darkness.  Staring at people.  Even the unicorn mask I wore lost it's luster to him, even though he had bee so amused by it when we left the house.  When we started off, it was still a bit light, but the overcast sky brought the night on much quicker.  And the area we walk literally had no street lights.  It was quite a busy and long day.  Both kids were pretty tired by 7:15, but 'Milo's eyes were big and on the verge of teary.  I said "are you all done son?"  He said "yes" in a very tiny voice.  "OK, let go" I said, and home we went. 

When we got to the house and it was time to go with dad, 'Milo said, "I'm gonna miss you".  I said "dad is going to protect you and keep you safe just like I would".  I think he was stressed so I'm glad we stopped when we did.  I gave him a hug and a kiss and reminded me I would see him at his soccer game the next day.  I'm glad he can enjoy the holiday like other kids...at least for a while :) 

Wins! I'll take 'em where I can :)

Busy schedule lately that I haven't had too much time to post.  Halloween is on the rise so excitement is in the air :)  Plus both boys are playing soccer again this season (both teams are undefeated so far :) yay) so we're usually out on the field 5-6 days a week.  Makes for one tired mama!  Once the kids go to bed, that's usually my time to do my research, catch up on some of my fav TV shows, prepare for the next day and just plain relax.  But even in those last few hours of the day, I'm having a hard time staying up just from being exhausted!  My mom had some surgery too recently so our household is a bit topsy-turvy lately. 
But I do have an update on 'Milo!  We had an IEP meeting on Friday.  Not a full meeting, but just an meeting to say they were going to exit 'Milo from Speech and OT.  This is something that was brought up in his last IEP, by me and 'Milo's dad.  We agreed that we felt it was time.  He has made a lot of progress over the last couple of years in both area.  Personally I feel the sports helped a lot.  So they school said they would do an assessment to be sure this was the right decision.  They said he passed with flying colors in both area and felt that he did indeed had made progress.  I'm glad that he will now have more academic time; after all Jr High is right around the corner!  Trying to get him up to speed on his multiplication table has been tough, but he's got most of them down!  I will randomly ask him throughout the day and he'll get them right 99% of the time.  And spelling words... well, now that I've found a method that works for him, he no longer come home with a spelling test where he got them all wrong!  He gets 100%s now, or at the most only 4 wrong.  This was a huge struggle, but as I've said before, find what works and go with it!  So lots of fun stuff going on and we'll continue to strive for more wins in our world with Autism.

Best quote of the day: "I want to touch everything!"

Most little boys love trains.  But there are many kids on the spectrum that have a similar fondness for them.  For my son, he use to love to watch the wheels turn.  Thomas was always the favorite.  We even had his first birthday party at Travel Town; a train museum in Los Angeles.  Was the really 10 years ago!!??  <sniff, tear> We went to visit Travel Town today and it is just as popular with kids as ever.  My kids always loved this place and that was no different today.  They were so excited that I even let them ride the train around the park all by themselves for the first time.  And they got seats right in front.  
'Milo had always been so sensitive about his hands.  He didn't like them dirty or sticky, but more so than just typical kids.  He reacted like it was burning his skin.  But over the years, with OT and therapy that he has had since the wee age of 2, it has really helped to relieve the anxiety he had about it.  So today when he exclaimed, "I want to touch everything!" I had a moment where I stopped and thought, "oh that's right!  he never did that before".  Watching him opening flaps and moving levers and not worried about the dirt on his hand and not SMELLING his hands after touching something!!  I mean wow, really.  Even as I write this I realize, he didn't smell his hands once!  This is really only in the last month and a half of ABA and he's already stopped smelling things. 

One might say, what's the big deal about smelling things.  Well, let me ask you this; as an adult, if another adult shook your hand and smelled their hand after, what would you think?  It's just not a socially acceptable behavior.  This is a life skill that most people don't have to be taught.  It's little things like this that people don't realize.  There is constant teaching when you have a child with Autism.  Today made me realize all the blood, sweat, are tears you put into helping your child it so worth it when you see what's been accomplished.  I appreciate all he has become so much.

Yesterday started off with a bang...

I was not good as you can see from the post I wrote on our FB page:

"Today I hate autism. I hate the challenging behaviors it gives my son. It's not his fault, it's the autism. I hate that I have those moments where I just need to close the door and scream! It's not my fault, it's the autism. I hate that it can ruin a moment in time for my family. It's not our fault, it's the autism. I hate that people who have not experienced autism first hand can be quick to judge. It's not their fault, it's the autism. I hate that at times I feel like I'm the only one that gets me, when there are thousands of autism parents having that same feeling. It's not our fault, it's the autism.
There are times that I love what autism has taught me. I love that other autism parents support each other. I love when I can share a suggestion that works for another parent and they are so appreciative. I love that ah-ha! moment when I figure out that one thing that helps my son "get it".
But today, I hate autism"

Autism and my Nuro-typical child

I have a son who is going to be 8 soon.  He has a brother who is Autistic.  He can be is brothers best role model and worst critic.  He is impatient at times, and that's understandable, but no one can deny how much he loves his big brother.  We started ABA a few weeks ago and have been having some good session.  But on July 3, things got rough as I described in my posts on our FB and G+ pages.  In the hour and a half that my older son was having his meltdown, D was in his room playing with the iPad and waiting for the calm.  He has seen these episodes in the past and has been in tears over it.  I feel bad for him when this happens.  Not only because he's obviously overcome with emotion but because at these times, I have all my focus on my older son.  But that is the least of his worries from what I can tell.  Aside from the gut wrenching screams that are definitely unnerving, he will say to me he was upset by what 'Milo saying (usually calling me names), or that he was hitting me or hurting himself (banging his head on walls or scratching his face)  Or he was upset that 'Milo was throwing things or knocking over furniture.  I'll admit, the older he gets, the stronger he is... and well, the older I get, not as strong as I used to be I guess, but at least for now, I can still overpower him so there isn't too much damage.  But Thursday it was evident that 'Milo had actually physically left me with some marks.  Honestly I've grown a thick skin to this.  I take none of it personally.  In fact, when every last bit of his outburst is over with, he'll sit quietly for a bit an out of nowhere he back to just being 'Milo.  He will tell me sorry for "being crazy" and give me hugs a kisses, the go on as if nothing had happened.  It's like someone flipped a switch. 

When my younger son saw this he said, "Did 'Milo do that to you!?"  I said, "yeah, but I'm OK".  He didn't respond.  The next day he saw my arms again and said "I don't like seeing these marks on you...when are they going away?"  I said, "hopefully soon".  Then today, 'Milo went over to grammy's for the night...honestly, I think she just likes to give me a "break" now and the, bit also to give me and D some one-on-one time.  Seriously, he deserves it.  I asked him what wanted for dinner and he said pizza.  I said "oh, you want to go to Pieology?", he said "no, just here".  So we went to the store, got a pizza, brought it home and sat and ate.  As we bit into our first slice, he put his hand out for mine, and held my hand...as we sat and had pizza... just the two of us :)

We need to talk about it!

I know, I know... who wants to talk abou this, right??  But don't we spend so much time already trying to give our special needs kids the best possible quality of life right now.  But what happens when we're gone.  What happens if your child is an only child.  What happens if you have other children who are Nuro-typical and go off to collage, get married and have a family of their own?  What if we live a long life, but are not capable of caring for our special needs child when they grow into adulthood?  Planning for a special needs child with benefits such as life insurance 401K, saving accounts, are critical in helping families pay the huge expense of caring for and educating their children with special needs.  However, a child with special needs cannot have more than $2,000 in their names; if they do, the government could freeze benefits such as Medicaid, Medicare, Supplemental Security Income, or Social Security Disability Income – money some families need to care for their child.

Here are a few things that I found on the Mass Mutual site that parents/caregivers should remember.

• If you have life insurance, make sure the policy does not benefit the special needs child directly; proceeds that are generally tax free should be paid into the child’s trust
• Do not give or accept financial gifts or assistance in the name of a child with special needs.  If you do, deposit gifts into a special needs trust that benefits the child.  these gifts can legally be given to the trust of a child with special needs and will not jeopardize government benefits if the trust is properly drafted to comply with your particular state’s requirements.
• Be aware: there is no difference between gifts of cash, bonds, stock, property, inheritance, annuities, art and automobiles; they all count against the child’s net worth

Another really good tip my cousin pointed out to me is a conservatorship.  When a child reaches the age of maturity 18 in most cases, but 19 or even 21 in some states and is not ready to make adult decisions, he or she is nevertheless considered an adult under the law.  A parent may find, that they are no longer allowed to handle their child’s money, gain access to their child’s health records, or make important medical decisions. It may be appropriate in these cases to consider a conservatorship.

All of this should be discussed with a attorney or financial planner to ensure the trust works best for the needs of the family and child.   

Check out this clip from Autism-Live from their show on May 8 where they talk about Special Need Trusts.

Sources:

Mass Mutal

The information provided is from my own research and is not specific for every family situation.  Please be sure to check with a Special Needs Trust Attorney or Financial Adviser to find a plan for your specific needs.

I came across this on my computer and I thought I'd share because this melted my heart then and still does. I have this posted at my desk at work and I see it everyday.  
Before I had my boys, about 12 years ago or so, I was diagnosed with Lymphoma and treated with chemo for 7 months.  Every year the Leukemia/Lymphoma society holds a fundraiser called Light the Night.  This is a cause that has been close to my heart since being treated and recovered.   I have taken the boys almost every year since they were little.  Everyone is given balloons; red for caregivers/supports, white for survivors, and gold in memory of someone who passed.  These balloons light the night.  It is a beautiful event.
In Nov 2012, when 'Milo was in 3rd grade, we went to this event like we had in the past.  At the time 'Milo's teacher had a daily assignment in the class where they would write in a daily journal.  These writings were sent home every couple of weeks...and that's when I saw it.  This beautifully drawn, beautifully written recollection of the Light the Night event we had attended.  I was so moved because before then I never really knew how much he realized what is going on around him or if it impacts him enough to remember something, beside cartoons or a video game.
But this time I knew.