Frustration...

This is not going to be a happy post. I am just very frustrated, and sometimes I am not even sure what I am frustrated with. It seems like nothing I can do is right, in my eyes or anyone's for that matter. I feel like I should be doing more for my kids, I feel guilty if I try to take a break. I even feel guilty for writing on this blog while they watch "Scooby Doo". It doesn't help to see posts on facebook and other places where parents put themselves out as being the "Mother of the Year". I guess with typically developing and special needs kids you will always have those parents who make you feel like you could do more. I have been told by a family member that I don't do enough, I should be in the floor with my children their every waking hour, maybe I should, but then I am confused when the same family member tells me that I spend "to much" time trying to get services for my kids, and that I shouldn't spend so much time thinking about their disabilities, or talking about them.

I just want to say.....I feel bad enough, there are things I want for my kids that I am just not able to get. A lot of things bother me right now that probably shouldn't, I am easily offended by things that probably shouldn't offend me.

I have had a lot happen in my life over the past 3 years. I don't really need to go into all of that, but I am going through a grieving process, multiple grieving processes actually. Maybe I am stuck, who knows, maybe I do need counseling. But, having people constantly tell me what I am doing is wrong, making me feel guilty for trying to take the occasional break, well that isn't making me feel any better.

I love my friends and family, I want a good relationship, but sometimes I feel so confused.

I know I am not the only mother who blogs about her kids, I know I am not the only mother who writes things on facebook to try to raise awareness. So, why are people trying to make me feel like a bad person, why do people act like I should be ashamed of my son's Autism diagnosis and hide it.

I am very proud of my boy, the fact that he is on the spectrum does not make me any less proud. Actually I feel more joy at his achievements than I would if he were a typically developing child.

Finally, my biggest pet peeve....STOP telling me that "A" isn't "autistic enough" that because he is so high functioning and he is so smart that I should let people think everything is okay, that he is some sort of child prodigy. He is smart, but there are issues, that is why I take him to doctor's and multiple therapy's. That is why I spend my nights online looking for the latest in treatments, even special diets. I tell people to raise awareness, autism isn't always what it appears to be, it isn't always "rain man" or a child in the corner banging his head into the wall. I suspect and I have seen that there are many children (and adults) out there, smart children, who are going undiagnosed. Children who struggle with social skills, smart people who lock them selves away, who have to be home schooled or who are miserable in regular school, adults who have a hard time holding down a job, who spend their lives on their computers because they don't have the social skills to go out into the world. Young children with whom intervention may make a world of difference in their lives as adolescents and adults.

So if you don't like the way I do things, then don't try to make me feel bad, you don't have to read my blog or be my friend on facebook. I struggle every day. I will do what I have to do, if you don't agree with my methods then I am sorry. Especially don't criticise if you have never dealt with what I am dealing with.....

Here is some information about families dealing with Autism, and what YOU can do to help.

Autism and Imagination...

I have been told by many professionals that because "A" has autism he can't use his imagination. I have to disagree! At least this don't seem to be the case with "A".

Just a little while ago he was sitting on the table, you probably think it is strange that I let my son sit in the middle of the table. We do a lot of strange, but fun things at my house! Anyway, he was sitting on the table, the table was his ship and he was a viking. He was spinning a big tale, sitting there with his viking hat on. He was fighting pirates and dragons. He had to get in a airplane to get off the ship, because "mommy I can't get off in the water." If that isn't imagination what is it! Maybe it is because he is "high functioning?"

I love this quirky, sweet, creative moments! I think about them when I am dealing with a big meltdown, and we have been having quite of few of those lately. Thanks to medication issues and school being out for almost two weeks due to snow! Even though "A" likes to be home, he misses his routine and schedule!

A "IEP" for Christmas...

I am sorry I've not kept up with this blog. I will do better. Tomorrow we have our first IEP meeting. I'm nervous, but excited that "A" will be receiving some intervention, AT SCHOOL! Last year at this time I was fighting for that, remember this poem?

We had Christmas pictures made, "A" did very well. Usually sitting for pictures is difficult for him, but he seemed to enjoy it this time, we had a really good photographer!

A big Pet Peave of mine...sorry if it offends!

I don't know if this bothers anyone else as much as it does me, and maybe it shouldn't even bother me. I am talking about those annoying parents who love to tell the world what geniuses their children are. Okay, I know that parents are going to brag about their children, it is normal. I do it too.

I am talking about those parents who are convinced their child is smarter than everyone and they want everyone to know it. They post about it on facebook, and twitter, they tell everyone they meet about their child's "poopie in the potty, and she's only 6 months old". Their baby slept through the night, walked, talked, and mastered quantum physics before any other child. They compete with everyone, they compete at daycare, church, school, and the PTO meeting.

Yes, this annoys me. As the mother with two special needs children this annoys me a lot. It is okay to be proud of your child, but don't be pushy! Do we really need a play by play of your child's day? I'm sure someone is going to say I'm jealous, that I wish my kid was as smart as their kid?

Well, no I'm not. I am very proud of my children, I would not trade them for a million of yours. A. is amazing, he is so smart, he works hard and every accomplishment is hard earned! The same goes for his brother Elijah, that little guy is amazing. No, he may not be able to walk yet, he has a limited vocabulary and he struggles. But, I can guarantee, he has accomplished more in his short life then the most accomplished, scientific, artistic, verbal, potty trained two year old!

Now for a little "brag" of my own..... some of the most intelligent people who ever lived had autism! Don't believe me? Google it!

The Invisible Disability

I never really thought about it this way until I read another bloggers buzz on seededbuzz. She speaks of people telling her that her son with autism "looks normal." This is so true, especially concerning my son who is high functioning. With little brother Elijah who has cerebral palsy it is easy for others to tell he has a disability, he can't walk at two and a half, and he wears orthotics. With Alex it isn't as easy, and sometimes it is hard to convince people that he even has autism.

When a person sees him in the store having a meltdown, they look at him as being out of control and they look at me as being a bad mother. What they don't understand is yes he has autism. Yes, he may be high functioning but he still has difficulties. He has a hard time with social interactions, and he has a hard time concentrating especially when his senses are overwhelmed.

He doesn't think like we do, I would love to know half of the things that go on in that amazing mind! He has a difficult time telling me how he feels, and why he feels that way. I could go on and on. I hope that someday people are a little more sensitive to these children. If you see a child having a tantrum don't just assume that the child is naughty, and the result of bad parenting.

No one can understand what a parent is going through so stop being so judgemental. Instead find a way to help. Don't stand there and stare, roll your eyes, whisper, or smirk! It doesn't help the situation, it just makes the parent feel upset, embarrassed, or angry.
It isn't logical to expect a parent to keep their child with autism home all of the time just to make the so called "normal" world more comfortable. Our kids are learning important skills, parents are learning too. If I learn that a certain situation sets my child off, then I know to be more aware next time.

Yes, my son has autism! He is cute, smart, and can be very sweet. He also thinks differently, he reacts differently, but he is perfect in my eyes! I will do everything possible to see him succeed in life! Just know that!

About sensory processing...

Good morning, wow it has been a difficult one at my house. Not only do we have about $10,000 worth of wind damage to deal with, but our own little "hurricane" "A" blew through this morning. Talk about stormy, he was extremely irritable. From the moment he woke up until I walked him into the classroom. We had a MAJOR meltdown this morning. It was one of the most serious I have seen so far! I'm not sure what is making "A" so upset. Maybe it is the change in weather. Alex has sensory processing disorder this is common with children with autism but can also occur with other disorders or even by itself.

Children with SPD may be hypersensitive to touch, as infants these kids often do not like to be held or cuddled. They may be fussy during diaper changes and hate having their hair washed or brushed, they wipe kisses away, and they prefer being hugged. They dislike messy play, certain textures and they may hate wearing clothes, dislike the seams in their socks and are picky eaters. A's baby brother Elijah is like this. He was born extremely early he was not held often during his early months and when he was held it was often to receive uncomfortable or painful treatments.

Children with SPD may also be hypo sensitive to touch. These kids are considered under responsive they

• crave touch, needs to touch everything and everyone


• are not aware of being touched or bumped unless they are bumped with extreme force or intensity


• are not bothered by injuries, like cuts and bruises


• may not be aware that hands or face are dirty or feel his/her nose running


• may be self-abusive; pinching, biting, or banging his own head


• mouths objects excessively


• frequently hurts other children or pets while playing


• repeatedly touches surfaces or objects that are soothing (i.e., blanket)


• seeks out surfaces and textures that provide strong tactile feedback


• thoroughly enjoys and seeks out messy play


• craves vibrating or strong sensory input


• has a preference and craving for excessively spicy, sweet, sour, or salty foods
  

"A" seems to be more of a hypo sensitive kid, but has some hypersensitive tendencies as well. One of the things A does is play with my bangs. When he is nervous or sleepy he wants my hair, it doesn't matter where we are at, he will ask for my hair. A is also a kid that likes to wrestle, jump, and pretty much bounce off of things and people! One treatment A has been prescribed by his OT is a Sensory Diet with Heavy work Activities. Some of these activities are:

• Whole body actions involving pushing, pulling, lifting, playing, and moving


• Oral actions such as chewing, sucking, and blowing


• Use of hands for squeezing, pinching, or "fidgeting"

I have found that allowing A a small stretchy toy to fidget improves his concentration. My main concern is getting A the supports at school for his sensory needs, but that is a whole other story, and I promise to write about it soon, we have a eligibility meeting next week. I am sure it is not going to go well. So I am getting prepared!

There is so much more to understand about sensory processing, I just wrote about the two that seem to pertain to A. the most. To learn about the other aspects of SPD go here

A great book to read about Sensory Processing is "The Out -of- Sync Child" by Carol Stock Kranowitz. It is a great book for parents and teachers alike!

Wordish Wednesday

"A" really enjoys Lego's he will spend hours on them!

A therapy session.

http://www.autismspeaks.org