Incredible Day, Though Socially Exhausted – Totally Worth It!

I am utterly exhausted. My mind is fuzzy, my body is drained, my eyes feel heavy, and social fatigue is creeping through my bones. However, this week; including today had too many high points that I do not want to forget. The days leading up to Thanksgiving had me a little worried as to how the actual day would manifest. Every year it has been a challenging day, it inevitably would end up being a day of meltdowns. Daniel had a difficult time adjusting to the change of the day. For years, he could not understand why David would take the day off. In his mind, he was supposed to be in his office even if it was a holiday.

Last year was a little better, but it did end up being rough later in the evening and several days afterward.

This year, Daniel (all the kids) stimmed heavily by Wednesday Daniel pretty much secluded himself into his room for most of the day surrounded by his stuffed animals, electronic toys, covered with his weighted blanket. I checked on him a lot. He had not done that in such a long time that I wanted to be sure he was not over stimulating himself. He tends to do that when he spends too much time with his stimming loves and I need to help him regulate. Stims are great unless they become obsessive and induce anger or frustration. He was doing fine which was a pleasant surprise this year.

On Thanksgiving, day we were all very jolly.

Continued ... Incredible Day, Though Socially Exhausted – Totally Worth It!

Intermission Post – Keeping It Thanksgiving Lite! (Kind Of)

I figured I would hold off on my next “intense” post and keep chipper.  Well maybe not chipper, maybe less intense? Maybe half the calories in this post than, usual?  My brain is musing so I will need to write a little bit about what I am feeling so I can move on. I am feeling much less anxious this year at the start of the holidays. My heart does not feel as trampled upon as in years past, as. Today I looked out the window and had flashes of my dad, step mom, and my sisters all spending Thanksgiving together and I did not feel the usual hurt. I felt fine, but the lingering feeling of being left out and kind of sad struck me. I told David and expressed my confusion because Thanksgiving was never a big holiday time with my dad.

I did not spend much time with that side of the family during Thanksgiving, so I could not understand my connection to feeling left out. 

In addition, I am not being left out. Our family is welcome to come, but there is no way that we can make road trips. They live three and half hours away. Daniel still cannot handle being in the car for long periods of time and both Ariel and Joshua get car sick easily; so it is not an option. David shared his thoughts that possibly it was because Thanksgiving is so focused on family and since, I have this feeling of disconnect and not belonging that I may feel this sense of being left out. I am sure that plays into my feelings. I am happy with our tradition of staying home and spending time with the kids. Honestly, I am not a big fan of many holiday foods. I find many of the smells repulsive. Food makes me uncomfortable and the whole idea of sitting around eating with family and friends makes me want to burst into tears. I cannot even sit at the kitchen table with David and the kids. I hate being around people when I eat, HATE it!

Sorry, little tangent.

Continued ... Intermission Post – Keeping It Thanksgiving Lite! (Kind Of)

Empowerment and Validation

I spent a lifetime feeling invalidated, I was struck with even more of this when I became a parent. It is interesting how quickly people give advice or communicate how they feel you are doing it wrong. I found this harsh reality even more when it came from mothers, not only special needs ones. People can be so judgmental and down right hateful at times to mothers. I know this happens to fathers too, but there is a foreboding myth that if something is “wrong” with a child, the mother is at fault. Are we still getting blamed for the sex of the child? There is another aspect that plays into this as well and that is the “mom comparison,” which I find frustrating. I wrote about it in this post The Mom Spectrum.

I witnessed even more harshness when it came to special needs mothers.

However, I can really only comment on what I have experienced and witnessed. The moms that I have encountered who do not have special needs children, have given me unwanted advice, made ridiculous comments, or stayed silent and acted like I had the plague. Not all, but many did respond like this. The few parents and organizations I had contact with during the beginning of our journey invalidated me as a parent. When I allowed Daniel to behave certain ways, they scolded me in “loving ways” and made me feel that I did not know what was best for my child. If I did not correct Daniel when he hand-flapped, made loud stimming noises, ran the perimeter of the building, did not make eye contact, and the countless other things I “allowed” him to do, they politely told me that they did not allow their child to do that or they shared (without my asking) how they helped their child to stop such behaviors.

 I wish I could say that this has stopped, but sometimes this still happens. 

Continued ... Empowerment and Validation

Intermission Post!

My brain is all a clutter!! After sharing the last three posts, I am feeling vulnerable and anxious. I will continue my series when I am not so rambly and jumbled. I am sure it has much to do with Thanksgiving next week and the many social encounters I have had the past two weeks – along with delayed reactions to moving. My brain always takes longer to catch up and process everything. In light of that, I thought it may be a good idea for me to share about some things that have been happening. Daniel has surprised me in several ways this week. He and Joshua blew me away the other day! However, great progress can manifest great meltdowns. I share that because I think many people forget, including me.

Whenever there are major connections being made in the brain it takes a lot to process.

It affects the entire body and all the systems going on in there, for Autistics it can cause overwhelming emotions and unexpected reactions. For me, I have also seen this with my kids, when it comes to socializing or trying new things the excitement can take over and we do not realize how much we are affected by what we are doing the next thing we know we are crying feeling very sad, or we become irritable, sometimes angry and have no idea why. Trying something new takes much thought for me many times the attempt seems to come out of nowhere as if it is spontaneous when in actuality; it has been a long time brewing in my mind – I just have not voiced it.

I have seen this pattern with my kids as well.

Continued ... Intermission Post!

Grieving Cultural “Norms”- Releasing Idealistic Expectations

There is really so much that is packed into this topic – I cannot touch base on all that I would like to, I will expand on some of these thoughts in the next few posts I share … I did not understand grief until a few years ago, I was perplexed when parents said that they grieved over their child’s autism diagnosis. Out of my confusion, I went in research mode to try to understand grief and understand why these parents felt this way. Grief is predominantly defined as the loss of a loved one or you can also, feel grief with having an illness with no cure. When I understood that, I was able to see the paradigm these parents had about autism (even still today) being an incurable disease. I understood their emotions much more, however; I did not feel the same way. It’s not a disease.

I personally, gained much more understanding when I read this, “Although conventionally focused on the emotional response to loss, it also has physical, cognitive, behavioral, social, spiritual, and philosophical dimensions.” Wiki 

Throughout my life, I did not allow myself to grieve more accurately; I did not understand how to grieve. I do not have the same response to death and loss as others seem to have; my grieving process is different in many ways when it comes to the loss of someone or a pet(s) that I loved. I do not want to dismiss anyone’s emotions or condemn them for what they (feel) felt, however; I encourage people to read A Parent’s Guide to Responding to a Child’s Autism Diagnosis as a more positive approach. Words like “coping” and “grieving” fed into my fears. I chose to reject such social norms of negative thinking, but that came through a process. It was not instantaneous. How could I instantly be accepting of something that I did not understand? Not only that I had to filter through a lot of negative muddled perspectives in order to come to my own conclusions.

I grieved over our world and my naivety of human behaviors, though I did not know that I was mourning and grieving.

Continued ... Grieving Cultural “Norms”- Releasing Idealistic Expectations

5 Actions That Gave Me Hope About Autism

This is the intro post, I suppose; to a series of posts that I will share … I have been wrestling with all sorts of thoughts lately due to the stir in our community in the past week. My emotions and thoughts get all shaken and I lose my balance when these types of things happen. I know that many times it is a good thing and a lot of beneficial effects can come from it, (one being ”This is Autism” flashblog) however; I get overwhelmed with the many perspectives and I have a hard time discerning what I am feeling because it feels as though everyone else’s emotions have latched onto me. I cannot go into that now or try to work through those emotions. It’s the holiday season and I have enough to process with that. I need to feel productive, so I will share from my experiences – things that have helped me thus far in our autism journey.

These five things came to mind when I thought about what helped me with my transitions through our autism journey.

1. Grieving Cultural ”Norms”/Releasing Idealistic Expectations 
2. Being Empowered and Validated by Others
3. Not Blaming Autism for Everything 
4. Improving our Physical and Emotional Environment
5. Cultivating My Own Support Network 

 There were certain people and information that truly helped me and gave me hope.
Continued  ... 5 Actions That Gave Me Hope About Autism

“This is Autism” (Means to Me…)

Last Monday, Autism Speaks told the world that autism is:

 . . . living in despair

 . . . fear of the future

 . . .exhausted, broken parents

. . . lost, helpless, burdensome children

. . .  a national emergency

If that’s not what autism is to you, join us on Monday November 18th for the “This is Autism” flashblog.

~~~~~~~~~~~~

The words above are not new, I have seen them in various ways all over the media and social outlets since Autism became a common word in our household. In the beginning of our journey, those types of words were the dominating ones on the internet. Though, I did not understand at the time what Autism was; I still did not feel these types of things about my child. Now several years later, I have my “official” Autism (Aspergers) diagnosis, and our other son is in the process of receiving his as well.

Those words above and the similar ones like them were contributing factors to a poem that I am going to share. However, before I do I want to say a little more. We live each day with hope and a realistic view of what our children’s future have in store. Their future along with many other Autistic’s, child and adult alike, have promising futures because of what is happening right now. The gathering of voices to make a difference that cause lasting change is what I see. I see technology opening up possibilities that we cannot even image at this time – some of us may be imagining it right now! 

For this flashblog we were to share what ”This is Autism” means to you.”Continued ...

“This is Autism” (Means to Me…)

My Body Is Retaliating, I Think

Forewarning, sharing a bit about woman issues.   

In my post I’m Tired, Who Knew?  I shared a little about how I did not realize that I was tired. My tiredness has increased – I continue to battle fatigue. People who are around me have had no clue that I am in a lot of pain, I am exhausted, and my emotions have been in an increased irritable state. It has been a little noticeable that I am irritable and my patience has been stretched. I have not been mean or anything – just things that do not ordinarily bother me are bothering me. I had not noticed, I mean I noticed these things; however, just as “being tired” there is no time.

No time for fatigue or pain!

I had not paid much attention, but I could see significant differences in my workout performances along with how I felt afterward. I knew that I would have to recover from the move and that I may have, some slight issues because I ran out of my medication. I take medication to try to stop my bleeding. I have woman issues that cannot be explained. Last October, I went in to get everything examined. The doctor wanted to see if anything could be found through ultrasound and other tests. It sounded as if my endometriosis had come back – nope. Possibly cyst, abnormal paps smear, polyps, something on my cervix  - nope.

Nary a thing wrong with me except he found a laceration and I had been bleeding for over a year.

Continued ... My Body Is Retaliating, I Think

Autism Speaks – House of Cards – Similar?

Am I comparing Autism Speaks to the Netflix show House of Cards? Why indeed I am. I watched the series just this week and noticed similarities in the politics of one’s personal agenda that led to the underhanded, spiderwebish manipulations, the ego-stroking, strong-arming, and fear-mongering of people and their destruction, without a single thought or care. I have yet, to hear or read the countless ways Autism Speaks has actually helped families – they are a directory of support. They funnel you through all sorts of links (link farm) and can connect you to the services that have shared their link/contact information with them. They do offer tool kits, blog posts sharing the latest Autism news or scientific “breakthroughs”, and other tidbits of information that may be beneficial to people.

However, on a personal level, I honestly have not seen much evidence of their contributions in real-life scenarios.

The local chapters I’ve contacted, in the early years, were happy to direct me to therapists and tried to convince me to jump on board with their local walks and fund-raising, but they could not help me directly with our financial burden and lack of insurance. That is my experience; maybe others have had more beneficial outcomes. After my experience, I pretty much forgot about them because my time was better spent on helping my child in our everyday life. Because they could not help, I did not see a reason to support them. My little bit of money went toward used books so I could learn about Autism, Occupational and Speech therapies, sensory processing disorder, and purchasing the cheap equivalents to the items that I needed to do the therapies.

I still had very little knowledge about Autism Speaks at the time.

Continued ... Autism Speaks – House of Cards – Similar?

Joshua’s School Evaluation – Good News!

Today was Joshua’s evaluation to determine whether he qualified for an IEP. We are still going through some hoops around here to get Joshua’s “official” ASD diagnosis, but the school psychologist, along with the rest of the team are in agreement that he shows “clear ASD traits, at the farther end of the spectrum” they cannot give an official diagnosis, but they feel he qualifies for services and that is what matters.

What a relief!

The whole meeting went very well and it was confirming for me. The special needs director seemed to be surprised at my understanding and willingness to move forward as quickly as possible, I assume she had forgotten that Daniel is my son as well. (Sometimes I want to stop these people and say, “Hey, guess what I am Autistic!”, but I do not feel that it would beneficial – at this time.  ) However, the special needs teacher did not and I could hear her giggle a few times when the therapists or director asked me if I understood everything. She said, “You are pretty much a pro at this by now.” Lol! I would not say pro, but I know quite a bit about my kids, their challenges, needs, and strengths so she knows that I will request whatever I feel will best help them and that I understand the process.

Blah, blah, blah I know babbling … 

Continued ... Joshua’s School Evaluation – Good News!

I’m Tired? Who Knew?

I have been going for weeks; my energy levels were at high peaks and I felt as though I would be able to maintain that level forever (except those times when my body shut down on me and I was fatigued, yeah … I always forget those times when my energies are high.) – until, last night. I felt very tired on Wednesday, but assumed that it was the weather and quickly concluded that there was simply too much to do so no time for tired. No time! Yesterday, I seemed to gain some burst of energy and managed to complete the entire garage mess, mounds of boxes and mish mash all organized and arranged tightly to fit our minivan in a snug little niche of the garage. I became fixated on ensuring that the car would go into the garage yesterday – it HAD to be done that day no exceptions!

I do not know why, my mind just grabbed hold of it and would not let it go. 

I did that while, doing school with the kids, unpacking random boxes inside, and feeding everyone. I thought no doubt I had enough energy to do an hour long boot camp session at the Y. David has been asking me for days if I need to take a break – me? No, NEVER!! There is so much to be done and I have to workout or else my mind may rage into anxiety or meltdown in the midst of all of this change. My instructor got onto me several times about my form. I did not realize how wobbly I was and my sprained ankle is still recovering so I am not at my best. She almost made me sit out several times, the last time she said, “If you are going to hold that bar like that get off my floor! You are tired!”

I looked at her defiantly and held my weight bar correctly while maintaining proper form.

Continued ... I’m Tired? Who Knew?

Smooth Move

This move has been one of the most positive experiences we have had. We have moved a lot over the years … this is our seventh move since David and I have been together. Five of them have been since the kids were born. Every time it has been pretty rough, but we went into survival mode and got it done. Once again, we ended up with very little help and that was a source of “almost” panic for me for several days. However, my dad and one of my sisters were complete rock stars and were a great help to us. My family knows how to move and we are genetically fast!

We can get things done quickly, I am thankful for that gene. 

I think that the preparations I made with this move eased anxiety more so than, in the past. Creating a schedule of when and what I was going to pack, clean, and rearrange made the fear of the “unknown” and the sense that everything was disappearing randomly, not so intense. I am not sure about others, but Daniel and I get on edge when we do not know where our stuff is – if I feel that I have lost something it can send me into a panic. I feel as though I have lost part of myself. Daniel seems to respond in the same way. Ariel and Joshua have their moments as well, but their belongings were all in their rooms. Daniel and I had no room really so our belongings were spread throughout the house on shelves or spaces where I could fit them. I was able to keep calm for the most part during all of this, but the last two weeks was getting intense.

We had to change our plans and try to move as much as possible on Friday instead of Saturday.

Continued .. Smooth Move